I've been having excruciating back pain for over a month now. It's felt like my back has been breaking. Apparently, I was right.
I've been to the PCP, rheumatologist, and urgent care clinic because the pain was so severe that I couldn't walk upright. They didn't seem to think that my pain was important so all they did was give me a shot of toradol (which helped immensely but wore off after 6hrs).
Usually my chiropractor is able to fix my back pain immediately but after several adjustments I wasn't feeling better at all. He actually made me cry during one of the appts (which made him feel bad because he's one of my best friends...).
So he ordered x-rays. We finally got the results and saw the films today. I knew when I saw his face that it was not good news.
I have T6-T12 thoracic vertebral body compression fractures.
He said he's never seen this in anyone my age. This is usually something that people twice my age get and even then they typically have one or two compression fractures.
So here I am in unbearable pain. I tried to make an appt with my PCP and he is booked out for 10days! I also see his wife sometimes, she is booked out even farther!!! I love them personally but they are impossible to get in to see and to get help when I need it most.
I just feel like crying right now.
[ 06-08-2012, 10:15 PM: Message edited by: sammy ]
Posted by ktkdommer (Member # 29020) on :
Sammy:
You poor thing! As if Lyme wasn't enough to deal with. I'm sorry to hear you are in agony and having a hard time getting help.
Hang in there!!
Posted by Lymetoo (Member # 743) on :
OH NO!!!! That is so horrible!!!!
Can you try calling a pain management clinic???
Posted by randibear (Member # 11290) on :
i'd head to the er...this is nothing to mess with.
Posted by Lymetoo (Member # 743) on :
I had the same thought. You need pain relief ASAP.
Posted by Keebler (Member # 12673) on :
- You TOLD your PCP of this and they are still making you wait 10 days? Most have some emergency time carved out. -
Posted by lpkayak (Member # 5230) on :
after my head/neck injury that made me disabled i couldnt get in to specialist for awhile and my friend a chiropractor gave me instructions on how to sit/stand/lie etc and uses of heat and cold etc...so i would not do more damage. maybe your chiro can do that.(i neede to lie down a special way)
i didnt look it up but i think torodol is an antiflam atory i got once after surgery...and i loved it too.
i know that ibuprofen is prescribed 800mg every 6 hrs...but of course you really need to be careful-take it with food etc...but that might take the edge off if you are not allergic to it.
can u tell us how old you r? does this mean you are dealing with osteoporosis?
Posted by dmc (Member # 5102) on :
If your insurance requires referrals your PCP via phone should refer you ASAP to ortho or neuro-surgeon. You shouldn't have to wait.
I'd just call one on my own or go to emergency room. It is nuts to wait.
Posted by Carol in PA (Member # 5338) on :
Something you could try for the pain is LED light therapy. You could buy a SOTA LightWorks and have it in a couple days.
If you buy from their site, they have a 30 day guarantee.
Posted by sammy (Member # 13952) on :
No, I don't have any pain relievers or anti-inflammatories, that's a huge problem. I've been telling all of my doctors that even 800mg of Ibuprofen every 4 hrs isn't helping at all.
I take curcumin (1,600mg), Xymogen's Nrf2, and krill oil which are supposed to be anti-inflammatory supplements but they are for general health. They don't help for immediate pain.
I understand why doctor's are hesitant to prescribe for pain because there are sadly lots of people that abuse medicines.
But my PCP knows me personally. I have NEVER EVER asked them for anything for pain. You would think that they would want to help me when I was sobbing and could hardly hobble into their office. Not so, it seems I have a "do not help" sign tattooed on my forehead, visible of course only by doctors.
Everyone acts afraid to prescribe anything because I am taking antibiotics prescribed by my LLMD. And I really wish my LLMD lived within driving distance right now. I would so rather see him than any other doctor around.
I can't go to the ER because my back pain problem has already been diagnosed. It is not immediately life threatening. My insurance will not pay for the visit. Also, my local ER's have not been too friendly or helpful in the past. I try to avoid them like the plague and only go when my LLMD forces me to go and calls them directly with orders.
I'm only 29, I shouldn't be having these kinds of bone problems.
Posted by sixgoofykids (Member # 11141) on :
I know someone else with Lyme and the same problem. Seems that it would have to be Lyme-related. Can you have copies of the x-rays sent to your LLMD so he can prescribe pain meds? If not, I'd go to the ER.
Posted by Maya12 (Member # 36392) on :
I aggree with 6 goofy kids I am a health care professional and this is definatly not something to play around with. With that many fractures you are at risk of causing spinal cord injury with any bending , twisting or sidebending movements basically you shouldn't move and someone needs to be taking care of you. Who cares about the price you don't want to mess around with this . Sorry to be so blunt but if you move the wrong way and one of the fractures moves you could blow a disk or compress the spinal cord. So sorry to be so blunt but this really concerns me. If someone came to me with 6 compression fractures I would immediatly send them to er no question
Posted by Maya12 (Member # 36392) on :
And its not just about the pain meds they will definatly help but that may give you a false sence of movement which could make things worse. Also the lower thoracic vertabrae house the nerve roots for many areas of the body such a vital organs etc. Also they may not want you to have too many pain meds as without them you will be more immobiale. Please again I really don't want to scare you. Just very concerned please reconsider going back to the er
Posted by randibear (Member # 11290) on :
oh just remember, my friend fell and blew three vertebrae in her lower back. she went to the er and they put her in traction in the hospital. she was in severe pain. she was off work for 7 weeks healing. she stepped off a curb and fell.
please go to the er. hey, what can they do, deny you treatment? don't think so.
after all, lots of people go there and get plenty of treatment and they don't have insurance and don't even pay. (i know cause my sister, aunt, and family are in the medical field.)
also you are risking paralysis from the waist down if it's in the thoraic area. please don't delay.
Posted by Sammi (Member # 110) on :
sammy, this is terrible.
Your doctor cannot fit you in for an emergency? If not, I agree with the others to either go to the ER or call your Lyme doctor.
I hope you can get relief soon. Please keep us posted.
Posted by sammy (Member # 13952) on :
I called my PCP's office before noon and they could not fit me in until friday 3/23. The secretary said that I could keep calling to see if there were any cancelations for an earlier appt. She said that if I needed be seen sooner I'd have to go to urgent care or the ER. I was so upset, I didn't even make the appt with it being so far out.
My chiropractor did not recommend being cautious with my movements. I think that he was probably as upset and in shock about this diagnosis as I was.
His only recommendation was to get a dexa scan, work with my PCP to find out why my bones suddenly became so weak, and start bone building treatment. I'm already taking supplements.
Obviously he won't be able to do any more chiropractic adjustments for at least a couple months. Until I am more healed.
I will call my PCP's office again tomorrow to see if I can actually talk with an MA. Usually I end up leaving a message on a voicemail that never gets answered. In this case, it is worth a try to call again.
Posted by Lymetoo (Member # 743) on :
IF I were you, I would NEVER do adjustments again. As a matter of fact, I will never do them again. They aggravate me more than help me.
I don't think it's in your best interest to have an adjustment.
I have nothing against chiros and had my last adjustment less than a month ago.
Please keep pushing to get some help!!
Posted by seibertneurolyme (Member # 6416) on :
Sammy,
So sorry to hear this. Hubby had a rib fracture during a chiropractic adjustment about 3 years ago. He thought it was a strained muscle and went back for 2 or 3 more adjustments. Then one morning he could not raise his arm it hurt so bad -- so we went to the ER and they did an x-ray.
After that we found out that he has severe osteoporosis. He has had 3 annual Reclast injections and has had some minor improvement in bone density.
Can't remember which pain killer the ER gave him because he does not do well on pain meds -- used to aggravate his neuro symptoms.
Anyway -- there are 2 things that were somewhat helpful with the pain that you could try. Tiger Balm is available at most drug stores and some health food stores. You would need someone to rub that on the painful area. Or you could try Saint John's Wort oil applied topically as well or take St John's Wort tincture.
Hubby is 56 so he is quite a bit older than you. But we definitely feel that his tickborne illnesses have contributed to his osteoporosis.
SInce doing the Reclast injections hubby has a hard time keeping his blood calcium in the normal range -- even though he takes 3 different kinds of supplements.
He had 2 bulging discs which were very painful a couple of years before the rib fracture. Of course the neuros said that they should not be causing pain. But once he did lumbrosacral decompression treatments the pain went away and he has had no further problems.
Are you taking silica? Pretty sure that is one of the supplements Buhner recommends for building bone and cartilage. And it is really not that expensive.
Bea Seibert
Posted by sammy (Member # 13952) on :
Lymetoo, I also have a genetic disorder Ehler's Danlos Syndrome that causes hypermobile joints.
I get frequent joint dislocations and subluxations. My chiropractor literally cares for me head to toe. He puts me back together.
Even if I can't get back adjustments for several months I will probably need other chiropractic care for my hips or knees...something!
I have an immunologist appt tomorrow at a large university that will take several hours. When I am home I will use every minute of my spare time to try to get some help for my back.
At least I have a follow-up appt with my rheumatologist next week for back pain that I made last month. Hoping that I can move that up and get him to order the dexa scan and start treatment.
I need to get a referral to an orthopedic spine surgeon for a consult. I would also like to see an interventional radiologist because I know that they can do some minimally invasive procedures that provide immediate pain relief and structural stability (Vertebroplasty and Khyphoplasty). I want to know what ALL my options are.
I know that I need to act fast. I don't want any more damage.
Lesson learned. New severe pain is a sign that something is not good. Something needs to be addressed and should not be ignored, no matter what the doctors say. Because they treated me as insignificant, I began doubting my own strength and my own body. I thought that my having pain was my own weakness or poor coping abilities.
Posted by susank (Member # 22150) on :
Sammy - sorry to hear this. And didn't you have an infusion scheduled for this week?
Posted by poppy (Member # 5355) on :
Some years ago, I had major lower back pain to the point that I could not sit down for any length of time. Scans (don't remember what kind) showed some abnormalities. This was after I had started treatment for lyme and babesia. Eventually this treatment took the back pain away.
So, this can be one of the consequences of infection.
In addition to everything mentioned, I would call around local and see if anyone has a good PEMF machine.
Posted by Rumigirl (Member # 15091) on :
OMG, sammy, I am just seeing this!! This is beyond the beyond. No wonder you have been in so much pain. I am so sorry to hear this.
I agree with what lots of people have said, you need to go to the ER, horrible as they may be, and get further evaluated, because as man have said, you may need to be immobilized for a while. You can't risk a spinal chord injury, which is all too possible. I know, because I have a friend who has had that, and I am close to it myself with bad stenosis.
Please, please to go the ER. Unless you can see a top notch ortho/neurosurgeon IMMEDIATELY, which is doubtful, you need to go to the ER. This is serious.
Please don't think you can muddle through until you get more help. You've had to do enough of that already.
Keep us updated. I'll call you soon. And I'll get on your case to go to the ER! Love and prayers to you.
Oh, and when you go, unless they say it's contraindicated for the reasons above, for Pete's sake, get some pain meds from them!! Even if it's true, they have to give you something. This is unreal. How heartless can they be??!!
You definitely will need scans of some sort to see more detail of what's going on; the ER could do that.
Posted by burnsjw (Member # 11819) on :
Sammy, I will be praying for you. You have been through too much. I know people who have had Vertebro and khyphoplasty and felt great after it was done. Hope they get on it quick.
Posted by Rumigirl (Member # 15091) on :
Also, you MUST get your PCP to give you a referral ASAP to a good Osteo/Neurosurgeon; you should NOT have to wait for a visit for this!! Maybe you should do the research about who you should see first (although it's possible the PCP would know who to go to). You have to demand this NOW. Or get a referral from the ER and get some kind of exception from your insurance co, due to the emergency and no response from your PCP.
Posted by randibear (Member # 11290) on :
i really wish you would go to the er hon.
i went one time and i was the only one there that had insurance. most were unemployed or whatever adn they were seen.
don't let money be an issue please. think about being in a wheelchair...
GO!!!!!
Posted by Lymetoo (Member # 743) on :
sammy said:
"Lesson learned. New severe pain is a sign that something is not good. Something needs to be addressed and should not be ignored, no matter what the doctors say. Because they treated me as insignificant, I began doubting my own strength and my own body. I thought that my having pain was my own weakness or poor coping abilities."
A lesson for all of us!
Hugs to you!! Posted by susank (Member # 22150) on :
Sammy - I did not get to finish my previous post. I have been thinking about you. Hope you get some answers and some help soon. Be careful and take care of yourself.
Posted by nefferdun (Member # 20157) on :
This is really horrible. I feel terrible for you. I cracked my spine once so I know how much it hurts. Maybe you could have a friend drive you pretty far away and take you to an ER there saying you need help immediately and can't get home. That is the only thing I can think of. Hang in there.
I wouldn't even mention the lyme. I know how they push us out the door when we say the L word. Say you have babesiosis.
Posted by Rumigirl (Member # 15091) on :
Up for response from sammy. I know that you had the immunologist today. But this can't wait.
Posted by sammy (Member # 13952) on :
Thank you all for your advice and concern.
I basically spent all day yesterday in 2 hospitals.
First hospital was for my immunologist appt, I spent 5hrs there. Needless to say, I was a miserable mess by the end of that appt. I hurt so bad I really wasn't able to eat or drink anything all day. Even they insisted that I had to go to the ER.
So after I left their office, I tried to choke down a few bites of food, and since the pain was unbearable I finally broke down and went to the ER.
Spent another 5 or so hours in the ER. They at least were very nice. I didn't have to wait long at all to be seen. Maybe because I was in so much pain that I was holding my breath and tears were streaming down my face and I couldn't hardly walk by the time that I made it up to the registration window.
They did give me pain medicine, thank God. Also took chest x-rays because I have had severe rib pain and difficulty breathing from the pain. I had a copy of the back x-ray report so they did not want or need to repeat those.
The oral pain medicine didn't help hardly at all so they ended up giving me a shot that worked great. Too bad I can't have that in oral form.
I had to lay down and cover my eyes for the whole car ride home (~30min) because the bright lights and movements were making me feel sick to my stomach. Unfortunately when I got home I ended up throwing up on myself as I tried to get out of the car. Instinctively my body kind of curled up.
Oh, that was not a good thing because just as I was getting sick I felt this new horrible pain and a loud pop/break/cracking sound in my lower back. I just laid on the ground and cried for awhile because I hurt too bad to stand back up. I was so mad at myself. Why do these injuries keep occurring over nothing?
So, the ER also recommended that I see a neurosurgeon but did not give me a direct referral. I had to call the group today to try to get an appt. My poor mom, she's been so helpful, she had to take my x-ray films and report to the neurosurgeon's office for them to review it today. Hopefully they will call and give me an appt soon now.
Anyways, I'm still in significant pain but I'm alive Have 3days worth of Vicodin to help me through. Trying my best to get a good neurosurgeon. Was told that may have to wait another week or 2...
Posted by Lymetoo (Member # 743) on :
OH man... I am in pain just reading this. Keep us posted and we will pray for you!!
Posted by Rumigirl (Member # 15091) on :
OMG, sammy, this is making me cry. Given the horrific and dangerous situation, can't the neurosurgeon's office fit in you in ASAP on an emergency basis??!! Ask your mom to please nicely and persistently demand this!! This situation is utterly dangerous, not to mention so horribly painful beyond belief.
You should be in the hospital for Pete's sake! To protect your body from any more breaks, and from harming your spinal chord. (These are two different issues---the neurosurgeon and the hospital).
Lord have mercy! Love and prayers going out to you and your family. I pray for your mom to have the strength to demand what you need, too! You are in no shape to be having to do the calling/demanding, etc.
Have you called JF and Dr. H to let them know the situation? I know that there is not much they can do, but they should know. If they have any input at all . . .
You need a guardian angel badly! Lots of prayers and love need to go out for sammy.
Posted by Sammi (Member # 110) on :
sammy, I am very sorry you are going through so much and having such horrific pain. I am glad you went to the ER and at least got some pain meds.
I hope the neurosurgeon's office will fit you in ASAP. Sometimes people need to be seen right away, and right now you do.
Keep us posted. Prayers continue for you.
Posted by randibear (Member # 11290) on :
call them and tell them you have vertabrae pressing on the spinal column with loss of sensation in legs and loss of bowel, numbness in buttocks.
you'll get in.
Posted by lpkayak (Member # 5230) on :
gees. well as bad as the the pain is i am glad you got some relief and it seems you have moved a few steps forward without the pcp
good luck. i keep thinking of what maya said about hurting your spinal cord. seems like you really shouldnt move much until a good doc figures it out
Posted by momindeep (Member # 7618) on :
Holy buckets!
Posted by Healing in Santa Cruz (Member # 7798) on :
Dear Sammy,so sorry you are having to go through all this.
Blessings to you getting all the help you need and comfort. I feel so bad for you. Healing Hugs Posted by Silverwolf (Member # 9196) on :
<<<<< sammy >>>>>,
Dear Lord,
Sammy is in so much pain, and needs your protecting Angels until she can be properly treated.
Please blanket her with love light and restful peace. Let her stomach be soothed,so there is no more nausea, and keep the bones in place while she waits!
Please let them work her in for the needed appointments very very quickly!!! And please let the pain stop.
Give the doctors and surgeons willing hands and caring hearts to help Sammy. Please do not let any further damage occur!
In the name of the Lord Jesus Amen!
Sammy you have our prayers hon!
Jus' Silverwolfi and TxCoord too
Posted by sammy (Member # 13952) on :
When I gave the neurosurgeon's office my medical history over the phone I told them that I have had new numbness and tingling in my arms.
I also broke down and cried when she told me that I may have to wait a week or 2 to see the doctor. She tried to keep asking me questions but I couldn't talk anymore. I just kept crying because I was so upset and so overwhelmed by this whole awful situation. I think she finally got the point that I really was in excruciating pain and really did need seen ASAP. At least she seemed more compassionate after that.
I felt dumb for crying again but I couldn't help it. I just couldn't imagine waiting 2 more weeks before I could see a neurosurgeon for this horrible pain. Plus, after last night, I don't want to cause more damage!
Hopefully they will call me tomorrow with an appt date or MRI scheduled.
I am usually very stoic when it comes to pain and sickness but this has pushed me over the edge. I've never cried so much in my whole life. It's really embarrassing.
I don't even know how to tell my LLMD about all this. He knows that I've been having back pain and seeing my chiropractor for it. At first he thought it might be a herx but then he said that a herx shouldn't last this long and it should have let up by now.
I feel so dumb, I don't know how to tell my LLMD that I fractured all these vertebrae. I don't want him to get nervous and change my treatment protocol because then I might feel even worse.
Thank you all, I really would appreciate your prayers.
Posted by Lymetoo (Member # 743) on :
PRAYING FOR YOU, sammy.
I would cry buckets! NO SHAME there at all, honey!!
PS.. YOU did not break them.. they just BROKE!
Posted by nefferdun (Member # 20157) on :
This is the most horrific thing I have ever heard. I wish there was some way to help you. If it were me I would have someone drive me to a far away hospital and tell them I had an accident.
Posted by aperture (Member # 34822) on :
I agree with nefferdun. What is wrong with your hospital????? This is an obvious emergency!!! They admit people with much less going on.
Of course you feel like crying..how on Earth could you feel any different given what you are going through.
I am praying that the Dr will get you in ASAP.
Posted by DKat (Member # 30941) on :
sammy, Praying for you. I'm so sorry you're going through this pain ... it's okay to cry (just reading this, I cry with you)!
May God bless and heal you as you sleep and bring the right doctor into this case.
Psalm 126:5 (NIV) Those who sow with tears will reap with songs of joy.
Posted by Catgirl (Member # 31149) on :
Wow, Sammy, this is horrible. Can you open the phone book and just start dialing more neurosurgeons? Or your lyme doc might tell you who to call (definitely worth calling).
I think Maya is right, this is nothing to mess with. It is more important that you see someone pronto, than wait for a specific doc.
Tell them that the pain has gotten much worse (even if it hasn't), and that it is absolutely unbearable.
You really shouldn't have to wait. Any compassionate doc should get you in there quickly.
Posted by lpkayak (Member # 5230) on :
from experience with llmds-good ones-when it gets acute like this with clear dx(xray) and regular docs involved the llmds want to back off. it happened to me a few times...when gi or general surgeon handled a crisis and then i went back to llmd
you might have to stop lyme tx for awhile-sometimes you cant get the emergency care while on the lyme meds...but thats ok. it was for me.
i just really think you need to limit movement. can you get someone to talk for you on the phone?
maybe they think you are more well than you are cuz you are alone. maybe you could have someone stay with you til the pain is under control.
good luck
Posted by Rumigirl (Member # 15091) on :
Embarrassed by crying??!! Are you kidding me? They're lucky that you aren't screaming! And if you weren't crying, no one would get it. People can be unbelievably dense. It's your PCP who should be embarrassed, and much more than that!
It's still clear that you should be in the hospital now. You must go to the hospital and insist that you be admitted---unless you can see the neurosurgeon IMMEDIATELY. Let them know that you can't move, eat, etc., and that you are at immediate risk of paralysis. This is so far beyond belief.
Do NOT try to hold in your tears, especially for any doctors or doctor's sec'y's! They won't begin to get it otherwise.
On the issue of telling your LLMD, on second thought, I think you and Ipakayak (sp?) are right. Probably wait until the "dust has settled" more and you know what is going on and what will be done about it--or until you have to let them know. If they get upset that you haven't let them know, you are too busy coping with the situation and the pain.
Lastly, I wonder if any of the meds you've been on have been a factor in this or not. I would ask your various pharmacists to look into whether any of the meds that you are on that they are filling, or the combo, could cause this---at least in part.
The infections, the Ehlers-Danlos may be the main part, but it's worth checking on--rather let the pharmacists do the work! If fact if anyone of them could check ALL the meds you're on in combo, that would be great.
Lord, Lord, Lord have mercy on sammy, please!
[ 03-16-2012, 02:08 AM: Message edited by: Rumigirl ]
Posted by susank (Member # 22150) on :
Sammy - I have not had a chance to read all of this. Just a thought for pain: can your chiro do any kind of "safe" pain therapy for you like cold laser? Ultrasound?
I know that Iontopheresis (sp?)works very well. But I think the drug is a steroid. Albeit very low dose. I wonder if another drug could be used the same way?
Posted by linky123 (Member # 19974) on :
This sounds like an emergency to me.
Have you tried to get in to see an orthopedist? They are used to emergencies and might have openings set aside for situations like yours.
I would call around and see if I could get in to see one. They specialize in your kind of injury.
They usually have CT scanners, xray machines, etc. in their offices. Also, he/she might be able to admit you to the hospital without going to the ER.
Sorry if I have repeated advice from above posts, was unable to read it all.
Hope you get some relief.
Take care and God bless.
Posted by randibear (Member # 11290) on :
Sammy do you live in a large city? Should have more than one hospital.
Posted by sammy (Member # 13952) on :
Thank you for your prayers, encouragement, and advice friends
I do live near a larger city so yes there are many good hospitals nearby if I were to need another one.
I chose to go to that specific hospital ER because they are affiliated with an excellent neuro group called the Mayfield Clinic. I was hoping that one of their docs would be on call... maybe by chance I would get seen or get a direct referral or appt.
So even though I didn't get seen that night by a Mayfield doc, one has now accepted my case. I am scheduled for an MRI and better quality x-rays tomorrow. Once the reports are in on monday, he will decide what else needs to be done and will schedule the appt from there.
I know fractures sound like ortho problems and that's what I thought at first too. I've learned that orthopedic spine surgeons do not handle cases like mine. You must see a neurosurgeon for repair (for vertebroplasty or kyphoplasty and whatever else they might need to do...).
I've been very conscious of how much pain medication I am taking. Trying to take as little as possible. Then I get upset with myself because I still need the full dose that they prescribed... just to be able to move and breathe.
So I called my PCP's office again today and asked if they had any cancellations for monday. They had one appt slot open up, thank God! So I will be able to see my PCP on monday and hopefully he will agree to refill my pain meds to help me last until I can get in with the neurosurgeon. Of course, we also need to discuss why I'm suddenly having these fractures in the first place and possibly start a treatment for that too.
Monday feels so far away! I'm trying to be more careful with my movements so that I don't get further injured.
Posted by lpkayak (Member # 5230) on :
thank goodness...but please be careful with movement...and get help if you can
just to clarify-above i did not say "dont talk to your llmd" i said in my experience when i did talk to my llmd when in crisis he (they) always told me to deal with crisis-let attending doc tell me what meds to take or stop...and then go back to llmd when stable
good luck. be careful
Posted by Sammi (Member # 110) on :
sammy, I am so glad you are having testing done tomorrow and that a good doctor has accepted your case. What a relief!
Please take whatever pain medication you need. You will not be on it forever. Intense, constant pain can be so draining.
I hope the tests go well tomorrow. I also hope your appointment with the PCP goes well on Monday.
Do be careful with your movements and get plenty of rest in the meantime.
Posted by Silverwolf (Member # 9196) on :
<<<<< sammy >>>>>,
Prayers continue for your healing and protection, I am so sorry you are in such pain.
More gentle hugs and prayers continue!
Dear Lord,
Thank You that Sammy can be seen soon, keep her safe, and swaddled in Your love and comfort as she waits and while she goes thru the tests.
Please keep the Angels surrounding her,with gentle hugs, and freedom from pain.Let her have peaceful, restful, healing sleep.
In Jesus Name Amen!!!
Posted by docluddite (Member # 36032) on :
First and foremost: Pain relief. A medication that is, in essence, natural and has been shown to relieve the pain of compression fractures, is the hormone calcitonin, and it comes as a nasal spray. Next is diagnostics, but don't waste time; a dexa scan will tell you what you already know, that you have osteoporosis, but it won't do much more than establish a baseline. You may need to see an endocrinologist to understand why you have soft bones at a young age. You should have serum calcitonin measured, as well as the 25 hydroxy and the 1,25 dihydroxy vitamin D levels. Don't let them put you on the 50,000 IU vitamin D protocol if your vitamin D level is found to be low, you will need D3, the 50k is D2. Start D3 low and go up slowly.
Posted by linky123 (Member # 19974) on :
So glad you got an appt. Will be saying a prayer for you.
Keep us posted.
Posted by Rumigirl (Member # 15091) on :
But what about the risk of further fractures while not in the hospital?? Not that anyone loves being in the hospital, and least of all us. I guess you will be moving very minimally now. I just worry about your spinal chord, and also further fractures. It sure seems to me that you should be in hospital while they do your work up and get you stabilized.
I'm glad we heard from you. I thought either you were finally sleeping and resting a lot, or were possibly in the hospital.
Those are beautiful prayers from Silverwolfi.
Oh, and, yes, take what pain meds you need and get more soon. That much pain is destructive. You need to rest and sleep.
Docluddite is right both about the vitamin D and the calcitonin. You should try for quite high vit. D levels, like 75 or 80, even though that is higher than the usual lab ranges.
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by docluddite: A medication that...has been shown to relieve the pain of compression fractures, is the hormone calcitonin, and it comes as a nasal spray.
Don't let them put you on the 50,000 IU vitamin D protocol if your vitamin D level is found to be low, you will need D3, the 50k is D2. Start D3 low and go up slowly.
I just found this: Quote: Magnesium helps to regulate calcium transport and absorption. By stimulating the secretion of calcitonin, it aids the influx of calcium into bone and promotes optimal bone mineralization.
This looks like low magnesium is part of the problem of why we lose calcium from the bones and get osteoporosis.
The Lyme bacteria depete our bodies of magnesium, as they use it themselves. The body draws calcium from the bones to make up for the loss.
Doc Luddite, I have a family member who just took the 50,000 IU dose of D2 over the winter. Is there anything she can do about it now?
Posted by nonna05 (Member # 33557) on :
Thanks Silverwolf for the prayer..
But does this CR-P just never end?///
To others...is it Lyme related ,,is it meds
They say don't take calcium ,which may not of had anything to do with this .....
But Get some Mag shots from LLMD after this is over...
What's up with the D2 I took it for a while then found D3 drops..told to take then not and I'm only 38 on blood test..
I have back pain ,BUT i THOUGHT i KNEW WHY now I wonder
Posted by sparkle7 (Member # 10397) on :
Good luck to you, Sammi. I hope you feel better soon!
Thank you to DocLuddite, too!
Posted by sammy (Member # 13952) on :
So I finally saw my PCP today.
I went from 5ft 4.75in to 5ft 3.25in I've always been the small one in my family, now I'm even shorter! Oh, this just broke my heart even more.
My PCP is very nice, not judgmental about the Lyme or any of my other crazy medical things that have since popped up. He just kinda shakes his head in disbelief and asks if someone has written a book about me yet. Essentially my LLMD has written a book of office notes on me...
So thankfully my PCP was willing to refill my RX for pain medication, though at a lower dose. He really didn't want me to be taking it. I kinda have no choice if I want to continue eating, drinking, and breathing. I consider those activities life sustaining.
He also recommended some tests that he wants my rheumatologist to order. I have an appt with my rheumatologist wednesday, he has a special interest in osteoporosis so my PCP felt comfortable allowing him to do the DEXA scan and most of the diagnostic testing.
I asked if he thought that the neurosurgeon would be able to fix my spine since I have been having pain since Jan 31 (that's when I had my last appt with PCP's wife). He said he didn't know. Said he hoped that they would be able to do the kyphoplasty and restore some of my height and stabilize my spine without major surgery. Said he didn't want to see me have any other kind of major surgery to straighten my spine. At least he was honest. The idea of surgery still scares the daylights out of me. I don't like the thought of anyone touching me, especially my spine! Yikes!!!
I had my MRI and a whole bunch of x-rays of my cervical and lumbar spine done on Saturday. Went to a hospital that was supposed to be in the neurosurgeon's digital network. Well, apparently they told me wrong. Multiple phone calls and now my mom has gone to pick them up to bring them to the doctor's office. Hopefully he will look at the MRI and x-rays sometime tomorrow and give me an appt. I really need an appt soon! I can't handle the pain.
Thank you friends for your continued prayers. Please pray with me that God will work everything out so that I can have an appt soon. That he will protect my spine while I wait so that I will have no further injuries or damage. That He will also bless the doctors as they come up with a treatment plan, guide their thoughts, hearts, and hands to best help me.
Thank you also for your suggestions. I am taking some supplements that should normally support bone health. I take a good multivitamin by Thorne with calcium + other minerals. I take lots of magnesium (a mix). I drink at least 1 glass of milk, often 2 per day. Take 2,500 IU vit D3 + K2 per day.
My last vit D levels were 60. My LLMD said that was perfect. They were 80 about 6mo ago and he had me lower my dose of D3 because he said that was too high.
So that's what's going on with me. Still hurting but trying to hang on.
Posted by Sammi (Member # 110) on :
sammy, thanks for the update.
I am glad things are moving along, but I hate that you have been having pain for so long!
It is good that you will have further testing done on Wednesday. I wonder if there is there any way the rheumatologist can call the neurosurgeon to maybe get you in right away? Or maybe once the neurosurgeon sees your results, you will get in quickly.
Prayers continue for you. I hope the pain meds give you enough relief until you can be seen.
Hang in there, okay?
Posted by Rumigirl (Member # 15091) on :
OMG. this is crazy that the neurosurgeon hasn't seen your test results yet, and that you don't even have an appt yet!! I still think that you should be in the hospital with everything completely expedited (much as you are scared of being in the hospital). This is an emergency for Pete's sake!! When are they going to get it!??
Call the neuro's office first thing tomorrow and make sure that he sees it ASAP and that you get an appt immediately. If not, sorry, you need to go back to the ER and demand to be admitted. (by crying and letting them know how much pain you are in, and what is going on with no response from the neuro). I know you don't want that, but this is crazy. you can't wait.
Oh, and get the Rheumy and the Ehlers Danlos docs on board and calling the neuro to get things in motion IMMEDIATELY!! That may be the most helpful of all. Don't wait until Wed. to get the Rheumy to know what is going on and to contact the neuro. Time is not on your side. This must be handled NOW---before it's too late for the kyphoplasty.
Praying for you. Keep us updated. Lord have mercy!
Posted by sammy (Member # 13952) on :
*Update 3/20/12*
I finally got an appt with the neurosurgeon! He wants me to get a Dexa scan before I see him though.
The nurse said that this test is necessary for him to know if my bones would be strong enough to withstand any surgical procedures. So the earliest I was able to schedule my appt for is next tuesday 3/27.
I will go see my rheumatologist tomorrow and get the Dexa scan done as soon as possible. Hopefully those results will be good.
Before today I had not thought of the possibility that the neurosurgeon might refuse to treat me based on Dexa scan results. That worries me. I can't imagine living with this pain. I'm too young to have my spine permanently curved like an old woman. I imagine leaving this deformity/damage untreated would only lead to more back pain and destruction.
Thank you all for listening and praying for me. I feel like you all are really the only ones that care right now.
Posted by Lymetoo (Member # 743) on :
Oh my. I am so sorry you have to wait even longer. I will pray, pray, pray.
Keep us posted.
Posted by sparkle7 (Member # 10397) on :
All the best to you, sammy! I hope you get through this quickly.
Posted by nefferdun (Member # 20157) on :
You are in my thoughts too. I hope the surgeon accepts you and you can get over this quickly.
Posted by Dekrator48 (Member # 18239) on :
Praying for you, sammy!!
Posted by Sammi (Member # 110) on :
sammy, thanks for the update. We do care.
Why would you think the neurosurgeon would not treat you? Please do not think about this now.
Good luck at your appointment tomorrow, let us know how it goes.
Good luck on Tuesday too. Keep us posted.
Posted by Cold Feet (Member # 9882) on :
DEXA scan.
It's so sad to see our spines literally dissolving because of the lack of molecular (et al) diagnostics.
Did your chiro read good quality imaging studies prior to the adjustments?
Posted by ItsMyTurn (Member # 31469) on :
Special prayer for you Sammy!!!!
Posted by fflutterby (Member # 28081) on :
Oh you poor dear Sammy, I read this post and am near tears for you. Know that I am praying for you. We all are. Posted by seibertneurolyme (Member # 6416) on :
Sammy,
Hubby's PCP has the DEXA machine in his office. The machine actually has software that writes the report. And it is supposed to be able to compare prior scans if the machine is programmed correctly. Hubby's doc did not have that programming set up but both scans were done on the same machine and the reports are in the same format.
Ask about getting a copy of the written report and there might be an option of getting something on a disc as well.
I would push for getting the report ASAP and maybe you could have someone hand deliver the report to the neurosurgeon and get a quicker appointment.
Bea Seibert
Posted by debilyn (Member # 35753) on :
You're on my prayer list.
Posted by Rumigirl (Member # 15091) on :
Argggh! This is just unreal! There must be a place where you can get the DEXA scan same day on an emergency basis!! What about the local hospitals?? You or your mom could do a search (or ask the surgeon's office for a list) of places that do it, and call until you find one that can do it immediately. Can't the surgeon order it done on an emergency basis at the hospital?? you can not afford to wait! Yeesh! Leave no stone unturned to get this right away.
Did the neuro see your MRI films, etc. already? Doesn't he realize that this is an emergency?!! It's all stunning.
Love and prayers to you and your family. But, please, don't slacken now (not saying that you would!). I just want to encourage you to get this scan done right away. I'm sure there are lots of places to get it done.
Posted by Sammi (Member # 110) on :
sammy, how are you doing? I hope you have your test results and a plan of action.
Posted by sammy (Member # 13952) on :
*Update 3/26/13*
I will go for my DEXA scan later this morning.
Then have my IVIG treatment in the afternoon. It will be a busy day for me.
Tomorrow at 2pm is my appt with the neurosurgeon. I am excited and nervous. I really don't want surgery but I can't handle the excruciating constant pain. Oh, I hope and pray that he can fix my back, make it good as new.
Thank you for continuing to care and pray with me friends. Please pray that these DEXA scan results will be good enough for the surgeon to safely operate to fix my spine. That God will bless and lead my doctors as they come up with their treatment plans for me.
Hugs, thank you LN friends I don't know what I would do without you!
Posted by Dekrator48 (Member # 18239) on :
Thanks for the update, sammi.
I am praying for you, dear friend, that everything works out perfectly for you, and your pain resolves.
Huge hugs!! Just meditate on Jesus, Jesus, Jesus, when you are nervous. He will be there holding your hand.
Will wait to hear how things go.
Posted by Lymetoo (Member # 743) on :
Praying for you sammy!! Keep us posted!
Posted by lyme in Putnam (Member # 11561) on :
Prayers up.
Posted by Sammi (Member # 110) on :
I am praying that all goes well.
When you can, let us know how everything goes.
Posted by MorningSong (Member # 19989) on :
Dear Sammy,
I'm sorry for all you have been going through. Not able to be on Lymenet that often. Just wanted to let you know you have been in my prayers.
With love and prayers, Morningsong
Posted by Lymetoo (Member # 743) on :
update?
Posted by susank (Member # 22150) on :
Sammy - thinking of you - as I have been past days. Prayers for you from me also.
Posted by AuntyLynn (Member # 35938) on :
Sammy - I'm praying for you too!
But I have three questions ...
1. Why are you waiting around for a neurologist when you should be seeing an Orthopedic Surgeon?
2. Why in heck are they making you go out for a DEXA scan when you shouldn't even be standing? Most hospitals have them on site.
3. Why don't you just call an AMBULANCE to take you to the next appointment? If you get into another coughing/Nausea fit on the back seat of a car ... you could be paralyzed for life. In an ambulance, at least you'd be prone.
Sometimes pain can interfere with logic!
Posted by Dogsandcats (Member # 28544) on :
I have been scanning these posts and am amazed at our medical system. I don't know why.
You poor baby, I want to fly to where ever you are and smack some doctors around - wouldn't do any good for you, but sure would feel good for all of us on the board.
Keep you eyes on the Lord, as He is the great Physician. When pain overwhelms or fear creeps in - look to God. I don't know why you are going thru this - but I know God is with you. This may seem sappy considering how much pain you are in and all the nut jobs you are dealing with - but rest in His arms.
Sometimes I find myself holding my breath because the pain is so bad. Breathe out and take the pills for pain.
God bless you and I will be in prayer for you! Praying for a miracle ...
Posted by aperture (Member # 34822) on :
Sammy,
We are all praying for a positive Dr visit for you today.
Posted by RZR (Member # 20953) on :
Sammy,
We are all praying for you. So sorry you are going through this.
I would be glad to help dogsandcats smack some doctors around.....I have bart rage anyway and it would feel make me feel great!
Posted by fflutterby (Member # 28081) on :
Poor Dear Sammy, I do pray that God will lead all of your Doctors to heal you and relieve you of this. May the healing hand of God guide their every thought and move pertaining to your treatment.
Posted by sammy (Member # 13952) on :
*Update 3/27/12*
Oh friends, my appt did not go well. Not at all.
The neurosurgeon said that with the "7 vertebral body compression fractures" (yes, you caught that, I did fracture another one...) surgery would be too risky because I could potentially develop a bone infection due to my primary immune deficiency.
I got the distinct feeling that he simply did not want to be liable for treating me because I was a complex patient with the immune deficiency and the multiple compression fractures.
I asked if he would have treated me differently if I did not have the immune deficiency and he hesitated for several seconds then said "well... no...". That long hesitation was a big "yes" to me.
He said that my DEXA scan results were -3. So I do have osteoporosis. Which again I was told is unusual at my age.
I broke down and cried in his office because I have been waiting so long for this appt, waiting to hear his treatment plan.
When I learned that there was no treatment plan, my hopes were crushed. I told him that I can't handle the pain. It is truly unbearable. It's excruciating. I asked, what am I supposed to do? How long will this pain last?
He told me that I should restrict my movement and stick with bed rest. He gave me a prescription for a back brace to wear when I have to be up. Said that will take the pressure off my back and support it. Said the pain will gradually get better but it may never go away, I will "get used to it".
I just continued to cry. I tried to ask a few more questions. Enough to see that he was clearly uncompassionate, totally unempathetic. I cried all the way out of the office. I couldn't help it.
You probably would too if you were in this much pain and had been waiting for almost 2 months for someone to take your pain seriously and treat you!
This doctor that I saw is a part of a very well known and highly respected neuro group.
I'm stuck in a nightmare and I really need a miracle.
Posted by seekhelp (Member # 15067) on :
Sammy, I am SO sorry to hear this. I can't imagine. That is just heartless of any physician.
I know of a orthopaedic surgeon in Michigan who is one of the best in the country. He is not easy to get into, but you could try calling. He has quite a reputation and works on a lot of sports athletes.
PM me if you want the name/number.
I would never give up in that much pain. As many others said, I wouldn't hesitate to pop into the ER room and cause an uproar.
Posted by Sammi (Member # 110) on :
sammy, I am truly flabbergasted about this doctor's behavior. I cannot believe he expects you to live with the pain and just get used to it! This is unacceptable.
As so many of us here know, supposedly respected doctors are not always so. You definitely need to get another opinion.
I am very sorry this happened. I am also very sorry that you have an additional fracture.
Have you told your Lyme doctor what is going on?
There has got to be a way for you to get the help you need. Can your mom or someone nearby make some calls for you?
Prayers continue. Hang in there.
Posted by Razzle (Member # 30398) on :
Sammy,
Your situation is beyond imaginable. My prayers are with you.
I just sent you a PM with some information. I hope it helps.
Take care,
Posted by fflutterby (Member # 28081) on :
Don't give up Sammy, there are other Dr's out there. I am so sorry you are in so much pain. I will continue to pray for your miracle.
Posted by sammy (Member # 13952) on :
No, I have not told my LLMD yet. I was going to call him after I saw the neurosurgeon and had more information about the treatment plan. But there is really no treatment plan.
Right now I just have a diagnosis and terrible horrible unbearable pain.
I know I need to tell my LLMD because they are going to be receiving copies of a bunch of labs results that my rheumatologist and PCP ordered in an effort to try to r/o what is causing my osteoporosis.
I feel like I don't know what to tell my LLMD. He's in another state. I wish I lived closer to his office so that I could see him in times like this.
I cannot see an orthopedic surgeon because I've been told that they do not fix this type of fracture. Originally I had a referral to an ortho spine surgeon (supposedly very good too). When I told them my diagnosis the doctor said that I needed to see a neurosurgeon.
I've made an appt to see an Interventional Radiologist (Dr.T) for a consult for thursday afternoon. I know that they too can perform the khyphoplasty using fluoroscopy to repair the vertebral body compression fractures. I really hope and pray that this doctor will accept me as his patient and treat me.
Thanks for praying for me friends.
Posted by pme (Member # 31621) on :
I can't evn imagine how frustrated ou are. Someone has to be able to help you I am just sick for you reading this. Praying for quick miracles for you.
Posted by Sammi (Member # 110) on :
I would let your LLMD know even though the doctor is out of state. He/she may have some suggestions.
I hope that Dr. T. is caring and that he can help you when you see him on Thursday.
Keep us posted sammy.
Posted by Lymetoo (Member # 743) on :
OH Sammy... I am so so sorry to hear this! Call a pain management clinic ASAP.. after calling your LLMD.
Posted by Dekrator48 (Member # 18239) on :
sammy,
I am so very sorry for all that you are going through.
I am fervently praying for God to have mercy on you, dear friend.
Lord, please guide sammy to all the right people that can help her in all the ways that she needs.
I agree, that it sounds like you need very good pain management in the interim.
If there is anything at all that I can do for you (besides praying), please pm me.
I am adding you to a prayer list right now.
I am praying and praying and praying..... Posted by sparkle7 (Member # 10397) on :
Sorry, sammy. I don't really know anything about this illness but I did find this article -
Osteoporosis in Men1 John P. Bilezikian - Author Affiliations
Departments of Medicine and Pharmacology, Columbia University College of Physicians and Surgeons, New York, New York 10032
All of this takes time to figure out. I think you could try to get the pain under some control & then try to think about it & study. It's hard to think when the pain level is high.
It's really hard to find a good doctor. If you could get some control over the pain - it would be a big help. Then, you could focus on trying to get some kind of cure or treatment plan.
Hang in there... You never know what tomorrow will bring.
Posted by sammy (Member # 13952) on :
Here is more information about the khyphoplasty procedure and also a video that explains it:
Sammy, it is my understanding that kyphoplasty is what is done in these cases.
I have friends who have had it. They were in extreme pain with multiple fractures like you. (None of them had lyme disease.)
They thought the kyphoplasty would immediately stop the pain, but it doesn't. But, over a period of months after getting the kyphoplasty, the pain does decrease considerably. For some people, it is just mild pain after the kypho. The pain is no big deal anymore.
So, just wanted to say that I never heard of surgery for your condition, only kyphoplasty.
Maybe I am not up on the latest. Please get the kyphoplasty as soon as you can schedule it.
I will be praying for you. I have seen friends with multiple breaks like you, taken them to an ortho, then ortho said get kypho, taken then to the kypho, seen them get their lives back.
Then, I took them for Reclast infusions to work on getting the bone density to improve. You get one infusion per year.
They are out and about as before, enjoying themselves. That can be you also, dear one. That is my fervent prayer.
I guess you know that you have to avoid anything that jerks your back, make sure you don't fall, and things like that so that you don't get more fractures. They can happen very easily.
Posted by susank (Member # 22150) on :
Sammy - a thought - were you offered Pennsaid? Topical Diclofenac? Rx. I have two friends that use it. They say it is miraculous against pain. One friend has an unoperable broken bone in her foot. Navicular bone I think. Nothing helped her. The Pennsaid has. I think it cannot be taken with oral pain meds. I think it comes in a gel. The original use for it was for arthritic knees (I think). But now doctors will prescribe it for other pain areas.
Posted by sparkle7 (Member # 10397) on :
Effectiveness Common Spine Surgery Shows No Benefit Robert Langreth, 08.05.09, 05:00 PM EDT The findings will provide ammunition to those pushing for more ''comparative effectiveness'' studies as part of health care reform.
An expensive and common procedure treating back pain from osteoporosis turns out to be ineffective, no better than a fake surgery, two major studies have found.
Called vertebroplasty, the procedure involves injecting surgical cement into the vertebrae of patients to relieve pain from spinal fractures due to osteoporosis. Some 750,000 Americans get these fractures each year. Vertebroplasty and a related procedure called kyphoplasty have soared in popularity in recent years after doctors reported apparently miraculous results after trying it on small numbers of patients.
But early studies reporting positive results for the vertebroplasty procedure did not have control groups, making it unclear whether the purported benefits were simply due to the placebo effect or the natural tendency of chronic pain to subside over time.
The new studies, published in the New England Journal of Medicine today, tested vertebroplasty in a far more rigorous way. They randomly assigned patients to get either vertebroplasty or a fake procedure in which patients were injected with local anesthetic but no cement. Researchers followed patients for a few months to see if there was any difference in pain or functioning.
The results? "People who got a fake procedure did just as well as people who got the real thing," says back pain researcher Richard Deyo of Oregon Health and Science University, who was not involved in either study. Both groups improved, but the placebo patients improved just as much as those who got the real thing.
"It is absolutely shocking," says Mayo Clinic interventional neuroradiologist David Kallmes, who led one of the studies in conjunction with researchers at the University of Washington. "Vertebroplasty as currently practiced in this country and around the world doesn't seem to work."
Kallmes did the study because he always though the results reported for vertebroplasty seemed too good to be true--everyone got good results no matter how much cement was injected or what technique was used. And the mechanism through which vertebroplasty provided pain relief was a bit of a mystery. He figured if vertebroplasty was as good as promised, it would be easy to prove. He never expected results as stone cold negative as they were.
Kallmes says it is too early "to kill the procedure" but that doctors need to stop doing it routinely outside research trials. Some researchers went further.
"I don't think they should be done" any more outside of research studies, said Monash University rheumatologist Rachelle Buchbinder, who led the second study, done in Australia. "There are some risks, and we did not demonstrate any benefits."
Side effects of vertebroplasty can include cement leakage and the possibility that it could increase the risk of future fractures.
Johnson & Johnson ( JNJ - news - people ) and Stryker are among the companies that make materials using vertebroplasty.
Each year Medicare pays for roughly 40,000 vertebroplasty procedures at a cost of $3,000 or more, says Dartmouth-Hitchcock Medical Center orthopedic surgeon James Weinstein. If the new studies' findings are correct, much of that money has been wasted. He estimates that at least that many more expensive kyphoplasty procedures are done.
They findings are likely to provide ammunition to legislators and doctors pushing for more "comparative effectiveness" studies to be done as part of health care reform. The goal is to get better data on which medical procedures and devices provide value for the money. "The results are a very big deal for all of health care," says Dartmouth's Weinstein. This is what the president is asking us to do--find the answer and pay for value. If things work lets pay for it, if it doesn't, lets not."
Researchers said the negative vertebroplasty findings raise questions about the effectiveness of a related procedure called kyphoplasty, in which the cement is injected after a small balloon is inflated to restore the shape of the broken vertebra. In 2007, device maker Medtronic ( MDT - news - people ) spent $3.9 billion to buy the company that makes kits used to do the procedure.
"There is no plausible reason why it would work where vertebroplasty doesn't work," said Buchbinder, who calls for blinded trials looking at the benefits of kyphoplasty.
Adds University of Washington neuroradiologist Jeffrey Jarvik, who worked on the American trial: "It absolutely calls into question the benefit of kyphoplasty as well � There is no strong evidence" that kyphoplasty is better, even though it costs more.
Medtronic says kyphoplasty is different from vertebroplasty; among other things, it aims to not just relieve pain but to restore lost height. It points to a 300-patient trial published in the Lancet this year that found kyphoplasty was better than nonsurgical care for relieving spine fracture pain and improving function.
But that trial was not blinded--patients knew which treatment group they were in. This is an issue because the mere knowledge you are getting the latest in high-tech procedures can make you feel better. Studies have found that fake devices produce bigger placebo effects than placebo pills.
Medtronic argues that a sham surgery trial for kyphoplasty is not needed because the Lancet trials followed patients for a full year, and that a placebo effect would be unlikely to persist for this long. "Placebo effects have never been shown to last as long as one year," the company said in a statement.
Vertebroplasty was first pioneered in France and has been done in the U.S. since researchers at the University of Virginia reported good results in the 1990s. "It is a very simple procedure to do," says Kallmes. "Everyone picked up on it and stared doing it. Kyphoplasty, which adds in the balloon, became popular more recently.
But the new studies testing vertebroplasty's efficacy took years to perform because doctors were reluctant to enroll patients. They were convinced that vertebroplasty worked. The Mayo Clinic/University of Washington trial had to expand to locations worldwide to attract enough patients. It eventually got 131 patients to agree. The Australia trial only enrolled 78 participants, far less than originally planned.
Some doctors even said the trials were unethical. One 2005 editorial in the Journal of Neuroradiology predicted that a randomized trial of vertebroplasty "would almost assuredly merely confirm the data that we already have" and thus "does not seem necessary or ethically justifiable."
Patients may still ask for vertebroplasty no matter what the results show. Sister Rogene Fox, an 81-year-old nun at Assisi Heights convent in Minnesota, was in the placebo group of the Mayo Clinic study after getting a painful vertebra fracture in 2007.
The pain went away 10 weeks after getting the placebo surgery, she says. This year, when she had a second vertebral fracture, she went back to get the real thing. Her pain went away within 10 days. "For me it was better, because within 10 days to two weeks my pain was considerably relieved. I would go back for another one," she says.
-----
Sorry about this... I don't mean to be a "devil's advocate". I've been around for a while & I've seen all kinds of "stuff". You have to look for every angle & study things. I wasted alot of time when I didn't... Just from my own experience.
The problem is that these doctors get paid for doing "procedures". It's based on capitalism - not healing... It's a bad model for medicine. I could go on for days but I'll spare you.
Look into everything thoroughly before you make any decisions.
Posted by Robin123 (Member # 9197) on :
Ugh - I just read this for the first time - so sorry you are going through all this -
My first thought: can you do some investigation around the osteoporosis issue to strengthen your bones?
Second thought - look into a PEMF machine - pulsed electromagnetic frequency machine - it can work wonders with healing the body - I witnessed a lot of people using it who had all kinds of pain conditions and doing better from it.
It's a small box that emits electromagnetic pulses in a white coil that we hold next to the body.
Chiropractors and physical therapists can sometimes have the machines.
At least, take a little time to read the literature about it and see what you think re your situation - I'd be looking for any testimonials that matched what you're going through.
Posted by Catgirl (Member # 31149) on :
quote:Originally posted by TF: Sammy, it is my understanding that kyphoplasty is what is done in these cases.
I have friends who have had it. They were in extreme pain with multiple fractures like you. (None of them had lyme disease.)
They thought the kyphoplasty would immediately stop the pain, but it doesn't. But, over a period of months after getting the kyphoplasty, the pain does decrease considerably. For some people, it is just mild pain after the kypho. The pain is no big deal anymore.
So, just wanted to say that I never heard of surgery for your condition, only kyphoplasty.
Maybe I am not up on the latest. Please get the kyphoplasty as soon as you can schedule it.
I will be praying for you. I have seen friends with multiple breaks like you, taken them to an ortho, then ortho said get kypho, taken then to the kypho, seen them get their lives back.
Then, I took them for Reclast infusions to work on getting the bone density to improve. You get one infusion per year.
Sammy, go for it, AND tell your LLMD asap. Seriously, make the call. Lyme is multiple chronic stuff that the LLMDs need to be aware of to help guide you.
Posted by poppy (Member # 5355) on :
Alternatives are described at Dr. Mercola's website, do a search for the word osteoporosis, if you are interested.
Also, here is something about strontium for osteoporosis.
Not recommending any of this, just making it available, since you already know the mainstream thinking on this subject.
Posted by sammy (Member # 13952) on :
I did contact my LLMD's office yesterday. Got a call back this morning. The nurse simply said that I could ask my rheumatologist for Forteo to treat the osteoporosis. Also make sure that I'm getting enough calcium and vit D in my diet. That's it.
Again, wish I lived close enough that I could make an appt to go and talk with the LLMD myself. I always feel like important information gets lost when you try to pass messages through busy office staff. And I believe that my LLMD's office is excellent. They are super hard working and they truly care...
This is just a difficult time for me.
Posted by AuntyLynn (Member # 35938) on :
Nutritional aids you can start right away:
Cod Liver Oil (NATURAL VITAMIN D with A with Essential Fatty Acids) I like Carlson Brand in green glass bottle - superior to others and very light taste.
YOUR BODY CAN NOT ABSORB CALCIUM WITHOUT FAT OR VITAMIN D! (This is why skim milk & "low fat" dairy foods are a health scam and a waste of money!)
PLUS - GET SOME SUNSHINE ON YOUR BARE SKIN! (SKIP the sunblock!) This is the BEST form of Vitamin D! The kind your body makes on its own with sunlight exposure! Do NOT wash with soap for at least a couple of hours after sunbathing.
Calcium supplements (Oyster Cal IS TOPS if you can find it! Lays down very quickly and will make your teeth pearly white too!)
Include calcium rich foods - not just dairy but seafood (like shrimp), CABBAGE & leafy greens.
Magnesium Citrate (take half as much as Calcium)
PROTEIN (eat extra! 60-80 gms per day. 1 Egg = 10 gm.)
Brazil Nuts (2 nuts per day = MDR for Selenium, which is also essential for bone growth)
The sooner you can lay down new bone the sooner your pain will diminish!
Follow the doc's advice to stay horizontal (as much as possible) on a hard bed or the floor: and use the back brace whenever you stand up!
You wouldn't walk around on a broken leg without a cast would you? The brace is the "cast" for your back!
Good luck, Hon!
[ 03-28-2012, 03:07 PM: Message edited by: AuntyLynn ]
Posted by AuntyLynn (Member # 35938) on :
Oh and BTW, BEWARE of pharmaceutical "osteoporosis" drugs!
Studies have proven they make bone that is BRITTLE and prone to fracture!
There is/was a "class action" lawsuit against the leading brand, because it was making women lose JAW BONE and teeth!
Posted by poppy (Member # 5355) on :
Aunty - that was one of the things mentioned in a Mercola article. The osteo drugs are problematic.
Posted by Robin123 (Member # 9197) on :
The PEMF machine is a serious suggestion - they're healing bones, etc with it -
Posted by poppy (Member # 5355) on :
As we know, lyme can cause all sorts of hormone problems.
Posted by DKat (Member # 30941) on :
sammy, Just read your post through tears but can't can't get anything past this furry brain tonight to say, but wanted you to know I, too, am praying for you.
This will make an awesome testimony when you're on the other side. (I don't say this lightly...I know with your faith, one lousy doctor won't make you loose hope)
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by Robin123: Second thought - look into a PEMF machine - pulsed electromagnetic frequency machine - it can work wonders with healing the body - I witnessed a lot of people using it who had all kinds of pain conditions and doing better from it.
Pulsed Electro Magnetic Fields influence cell behavior by inducing electrical changes around and within the cell. Improved blood supply increases the oxygen pressure, activating and regenerating cells.
Improved calcium transport increases absorption of calcium in bones and improves the quality of cartilage in joints, decreasing pain dramatically. Acute and even chronic pain -also caused by osteoporosis- may disappear completely.
I saw my new doctor yesterday. He was very knowledgable, very empathetic, very professional. I was impressed. It was such a relief.
He studied my MRI's, did not trust the reports sent by the other doctor. He actually examined my spine. The other doctor did not even look at my spine.
My new doctor even did an exam under fluoroscopy to determine the most acutely injured vertebrae. Since I have so many fractures he said that he cannot perform the vertebroplasty on all of them. He can only treat 2 or 3 of the most damaged that are likely causing the most pain and instability.
He explained, when they do the vertebroplasty, they push in the bone cement and the bone marrow gets pushed out of the bone...It is reabsorbed by the body. That is kind of an unsettling thought so I'd like to minimize the amount done there.
So as soon as my insurance authorizes, I'm going to get a bone scan. This will show areas of inflammation and help definitively show my doctor the vertebrae that need repaired the most right now.
Today I finally got fitted for my back brace so hopefully I won't be accidentally falling and breaking any more back bones. I fell the other day and hurt myself again. I've been trying to be careful, it's hard when you have neuro lyme with balance problems.
The back brace is really big and bulky. I didn't expect this. I've seen the ones that they use post-op on scoliosis kids, I guess that was more like what I was expecting. This is so big and thick it won't fit under any of my t-shirts. Oh well, guess I'm not going anywhere anyways.
If I can get the bone scan and the procedure authorized through my insurance company soon my doctor wants to do the vertebroplasty next week! Oh, that would be so great
Friends, thank you all so much for you continued prayers, kind thoughts, suggestions, and words of encouragement. I appreciate you all so much!
Posted by Dekrator48 (Member # 18239) on :
Dearest sammy,
I am so happy for you...that you got some good news!!
Your Dr sounds great! We know that all Dr's are not created equal..that's for sure.
I am praying fervently for you..that your insurance will authorize the bone scan immediately, that the scan will definitely show the areas that the Dr should repair now, that your surgery is scheduled asap, that your surgery is successful and you heal without complications.
I am also praying that you do not have any more injuries...and even that you find some really large T-shirts
I really commend you for having such deep faith and a good attitude under such trying circumstances.
God is good and He will see you through all of this!
Posted by Sammi (Member # 110) on :
sammy, I am SO glad this doctor was kind and knowledgeable! He sounds like a keeper.
What a relief to have answers and a plan of action.
Is there any way to get a less bulky brace? I hope it will give you the support you need.
I hope everything goes smoothly with your insurance coverage, so you can get the procedure done as soon as possible.
Posted by seekhelp (Member # 15067) on :
I am very happy to hear this and wish you all the best. I hope he can help you a lot and relieve your suffering.
Posted by TF (Member # 14183) on :
So glad to hear this. An answer to our prayers!
Posted by lpkayak (Member # 5230) on :
good news. prayers.
Posted by Silverwolf (Member # 9196) on :
<<<<< sammy >>>>>,
TxCoord and I are continuing to pray for you!
I am glad you got in to a good and competent Doctor...
Will keep praying for things to work for your best,and that the treatments are approved for the surgery procedure... very soon!!!
Jus' Silverwolfi
Posted by sammy (Member # 13952) on :
My back brace doesn't fit very well. It seems to fit well if I stand still. When I move it shifts upward, the hard plastic rubs my IV port and rubs my neck. I try to push the brace down but it shifts right back up to my neck.
I wonder if maybe my brace is too big? I try to make it tighter but the shell won't let it get smaller. They offered me the option of a custom made orthotic or a pre made one yesterday. Now I'm wishing I would have gone with the custom made one even if it took several days to make. They thought that a pre made one would fit well since I had a "normal" looking body shape. I went with their expertise and since I wanted pain relief and stability the idea of having the brace immediately made me happy. Now I'm not so happy.
Anyone else every wear one of these TLSO braces? Have you had this shifting upward problem?
Of course when it moves it hits my port and now my port really hurts. So much so I actually had to deaccess to let it rest.
When the brace is out of position it also doesn't support my back right so my back doesn't feel better either. So I've decided it's not a good idea to wear this until I can get it adjusted next week.
Bummer.
Posted by Sammi (Member # 110) on :
sammy, I am sorry you are having trouble with the brace. It definitely does not sound like it fits properly. I am sure it is hard to tell from just trying it briefly when you picked it up.
I would call the company and tell them this one is not working, and you need to get the one that is custom made.
In the meantime, is there something soft you can put under the brace where it is rubbing? Or maybe put a large Ace-bandage type bandage around it?
Posted by Lymetoo (Member # 743) on :
So glad you are getting HELP!! Praise God!!
Call Monday about the brace.
Posted by pug7 (Member # 36995) on :
You have the fractures because you have osteoporosis. Emergency care or surgery or neurology can not help osteoporosis. You need an endocrinologist who deals with bone metabolism.
If you take Reclast, be aware that Forteo will not work as well. Forteo is the strongest med, and with DEXA results of 3 and 7 fractures, you wouldmore than qualify.
Someone should be checking your parathyroid function as well, and many other tests (glandular calcium and D levels etc.).
One other caution: apparently, unfortunately, antibiotics can contribute to bone loss.
Posted by Dogsandcats (Member # 28544) on :
You poor sweetie. I would say I want to give you a hug, but I would probably break another one...
You are amazing, I would have been in so much pain and screaming- calling the docs every 5 minutes; the docs (or the nurses!) would have put me in a boat out to sea and waited for a group of sharks and dropped me overboard.
Did the doc give you anything for pain?
I know the prayers have helped you thru this and I ask that God continue to give you the wisdom to handle your decisions, the endurance to handle the pain and the strong faith to remind you every second you are in God's hands.
Posted by sammy (Member # 13952) on :
Thanks friends.
Yes, I am now very aware that I have osteoporosis. My doctors have started to run some tests to try to find out why.
Here are a few results if you all are interested. Also had CBC and CMP done but I can't list everything here.
I had my Vit D levels tested also, don't have those results yet. Last tests in December were 60, my doctor wanted me to stay at that level.
Any thoughts?
Posted by Sammi (Member # 110) on :
I believe you have said you have hypothyroid symptoms before. Your thyroid results definitely have room to work with.
Everyone is different, but I feel best when my Free Ts are in the upper 1/3 of the range. I would feel terrible with a TSH of 2.5.
If you are having hypothyroid symptoms (although it can be hard to tell what is Lyme and what is thyroid), I suggest asking your doctor for a thyroid med increase.
Posted by Lymetoo (Member # 743) on :
This may be something to research. My dr said he gives his osteoporosis patients Vit K2 and Vit D 3.. it reverses it.
Your MD can explain. The PTH and the last two Alkaline Phosphatase would be the ones to ask about, as you can see.
Thyroid is probably fine. They do go up and down.
You have a severe situation and should not mess around with Vitamin K and D3, which will absolutely not address your situation.
I came back on here to tell you that you should not use the back brace much. Your muscles will get weak. Those braces are very uncomfortable and sometimes do more harm than good.
Your pain WILL get better but most likely won't go away. You will learn how to move, what to do and not do (beware of opening windows, bending and lifting, etc.).
This is not some kind of short-term emergency but a serious long-term problem, that can probably be addressed with Forteo (recombinant PTH)followed by either strontium or Reclast. Forteo can be taken for 2 years and is a daily injection. Good luck!
Posted by pug7 (Member # 36995) on :
ps Biphosphanate drugs like Fosamax, Actonel, injected Reclast and Boniva, slow bone loss but don't rebuild bone. After several years, this can result in changes in bone microarchitecture that has resulted in some femur fractures. Osteoporosis doctors say that this only happens after 5 years. Many women don't want to take these meds for other reasons, mainly side effects.
Forteo, unlike biphosphanates, does build bone as well as slow loss. Rats got bone cancer on huge doses of Forteo, so use is limited to two years, but they are starting to loosen up on this since no humans have had any problems with cancer.
There is another drug out now called Prolia, but it affects the immune system, so anyone here on Lymenet probably wouldn't want to touch it.
Posted by sammy (Member # 13952) on :
*Update 4/16/12*
Hi friends,
I have good news, my insurance approved the kyphoplasty procedure to repair 2 of my fractured vertebrae. My doctor did a bone scan to compare with the MRI to help prioritize and see which of the fractures were the worst.
It is sad, as with Lyme, they are dictating care and not allowing my doctor to treat me as he believes is medically necessary.
My doctor said that with the insurance rules, if I'm still in significant pain after waiting 10days after the kyphoplasty of the first 2 vertebrae then he can apply for prior auth for repair of another 2 vertebtrae, until they are all repaired or denied.
So if you will, please pray for me. My kyphoplasty procedure is scheduled for this wednesday at 12:30pm. I am nervous because there are some risks, especially with having Lyme and the immune deficiency. But I feel like it is necessary. I can't even stand long enough to brush my teeth, the pain is overwhelming.
Thank you friends, words cannot express how much I appreciate your kind thoughts and prayers.
Hugs Posted by katiebobatie (Member # 28753) on :
oh gosh sammy, that sucks!
i am so sorry you're in so much pain... it sounds so awful!
you are always such a sweetheart and i hate that this is just one more thing for you to go through when you already have so much to deal with.
i will be praying for you... i hope you can find some relief soon.
Posted by Dogsandcats (Member # 28544) on :
I can't imagine your pain. I am pleased for you that things have moved forward.
After we have been with Lyme, ithink we get to know our bodies very well. We have to figure out so much on our own, we are more in tune. Keep praying and listen to your body and you will know what to do for sure.
God is always with you and will never leave you. Before I get knocked out I say that to myself and I drift off peacefully.
I will be praying for you. Thank you for the updates.
Posted by Rumigirl (Member # 15091) on :
sammy, it is outrageous that your insurance company is holding you hostage like this!! Although it is surely too late for this round, you definitely need to file a complaint to your state Attorney General's Health Bureau about this on an emergency basis----this IS and emergency!!
The fact that they not only refused to authorize any more than 2 vertabrae, against your drs orders and your need is not something you should accept!!
And they took weeks to authorize it, which also is an outrage. Don't let them sacrifice you like this so they can make more money!! Your state AG's office can make them do what they should. You pay your policy every month, they need to hold up their end of the bargain.
I wish you had a fairy Godmother to handle this aspect for you (and to heal you while she's at it!).
We will be thinking of you and praying for you during the operation and healing.
Posted by Sammi (Member # 110) on :
sammy, I am so glad you will be having the procedure and soon. It infuriates me that insurance will not allow your doctor to do what he feels you need.
I recommend contacting the CEO of your insurance company. Tell him the doctor has deemed the full procedure he wants to do as medically necessary. Explain that further complications could develop if you are not treated properly now.
I know you have limited energy, but maybe a family member or friend could make the call for you or write the letter?
How long is the procedure? I am praying that all goes well tomorrow and that you get lasting relief.
Keep us posted on how you are doing.
Posted by Jennifer70 (Member # 30280) on :
praying for you Posted by RC1 (Member # 31923) on :
Sammy, I just read your thread and it breaks my heart, I am crying right now. I am so sorry you are going through all this. I hope this procedure helps and will give you relief.
I don't know how you do it. Hang in there, you are a tough one.
R
Posted by Dogsandcats (Member # 28544) on :
Too bad we don't all live in the same area. We could make for a dynamic group going to doctor appointments with you....maybe the vision of that will give you a chuckle...all of our different personalities - checking the doc out, watching the nurses with every step....
we would be a group to contend with....
Can't be there - but we are in spirit and in prayer. God will always be with you.
Posted by Jane2904 (Member # 15917) on :
Good luck, Sammy. Praying for you.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Sammi:
I recommend contacting the CEO of your insurance company. Tell him the doctor has deemed the full procedure he wants to do as medically necessary. Explain that further complications could develop if you are not treated properly now.
- Worth a try!!
DogsNcats... that would be something else!!
Sammy... May the Lord Jesus surround you with his love and care and give you strength. I ask for healing in Jesus' name.
Posted by sammy (Member # 13952) on :
That's a great idea DogsandCats! I'd love it if some of you all could be here to be with me to watch the doctors and nurses and help me deal with insurance and stuff...
The mental picture is hilarious though because I imagine you with your dogs and cats too! Would Lymetoo wear her red tutu?
It makes me feel better knowing that you all are here with me in spirit and are praying for me. That is what is most important
I think that the procedure is supposed to take about 90min-2hrs tomorrow. I got a little distracted because the doctor started talking about risks next. That is mostly what is stuck in my head.
There is the possibility that an infection could seed in the cement at some point in the future (even years down the road) and the whole vertebrae would have to be removed. I am at higher than normal risk because of my immune disorder and current infections of Lyme and Co's. So terrifying....
Posted by Dekrator48 (Member # 18239) on :
Praying for you, dear sammy!!!
Our God is faithful and He will see you through all of this!! Posted by sammy (Member # 13952) on :
*Update 4/17/12*
Oh, I'm freaking out right now. My chiropractor friend called me a little while ago to wish me luck for the procedure tomorrow.
Said he hoped that repairing the worst vertebrae T12 would help reduce my pain. He also wanted to prepare me for the possibility that I would probably still have pain from the other fractures since they were only repairing one tomorrow.
I corrected him and told him that it was my understanding that I was supposed to have 2 vertebrae repaired tomorrow. Apparently, this was what my original doctor had planned. My new doctor, the one doing the procedure tomorrow, the one that I met with yesterday, sent a consult note saying that he only planned to repair one!!!
I tried calling the doctor's office but it was after hours. So now I have to wait until tomorrow morning. It may be too late to change anything at this point if he is truly only planing only one kyphoplasty. They will have only prepared for one procedure.
What a horrible misunderstanding and lack of communication!!!
I am so scared, upset and heartbroken. I can't believe that this is happening. I just want them to please fix my back. Why is that too much to ask?
Thank you so so much for your prayers, I need them more than ever.
Posted by Dekrator48 (Member # 18239) on :
Praying again for you, sammy.
I'm so sorry that you are dealing with this lack of communication.
Give it all to God and let Him handle this for you.
It is too much for you to worry about tonight.
God loves you dearly and He will give you the peace you need.
Praying for Him to work out all the details for you.
Posted by momindeep (Member # 7618) on :
I am with Dekrator...praying with her together for you.
I wish I was there sitting at your kitchen table praying for you and to give you some moral support.
The Lord knows all things...not some things...but everything. So He has a plan for you and He will work this out for your good...He promises that, you know.
In times of great stress, I light a candle to remind me that He is the Light of the world and imagine Him sitting with me right here, right now.
Perhaps you can sit on His lap and tell Him your troubles?
I will ask Him to calm you down.
Posted by fflutterby (Member # 28081) on :
Sammy, I am praying for you. I pray that God will calm you and allow the Dr.s to heal your pain. I pray that you find peace in knowing how much He loves and cares for you.
Posted by Silverwolf (Member # 9196) on :
<<<<< sammy >>>>>,
TxCoord and I will be praying along w/the others here.
Lord, As Sammy awaits the surgery and during the surgery time please keep Your Angels around Sammy, and the surgeons.
We ask for peace and healing for Sammy,and for wisdom for the surgeons. Please keep her wrapped in Your love,and keep the pain eased. Let her have hope and smooth recovery!
Amen!!
Jus'That Silverwolfi
Posted by Sammi (Member # 110) on :
sammy, let's hope the word "one" was a typo. It is possible right?
You believed the doctor said he would be repairing two right? Let's hope for two.
Hang in there okay? Good luck tomorrow. Prayers continue.
Posted by docluddite (Member # 36032) on :
You also need to have the 1,25 dihydroxy vitamin D level tested... Some lyme patients have abnormalities with this metabolite, and too much or too little can result in calcium wasting.
Posted by Rumigirl (Member # 15091) on :
I, too, pray that this was a misunderstanding, and that he is intending to do TWO vertabrae. I pray that all goes well tomorrow, and that you heal well and get relief from pain.
Then, we all come over and step in with your insurance company and doctors to do the other vertebrae!!
As you go in tomorrow, think of Jesus being there with you, and us, too! Quite a team.
xoxoxo
Posted by sammy (Member # 13952) on :
OK, it was a typo or misunderstanding. I am getting 2 vertebrae (T11 and T12) repaired today. Thank God!
Now that I can relax I realize I'm super tired. I don't think I slept well at all last night.
Hopefully anesthesia will be easy for me. Usually they look at me and try to dose me like a kid (I'm not...) but I metabolize meds quickly and need far larger doses equivalent to what they would give to say a 500lb man. At least this is what my last anesthesiologist told me in January.
Thank you again for your prayers. Knowing you all care and are here for me makes me feel better Posted by Dekrator48 (Member # 18239) on :
Thank you, God!!!
Surely the anesthesiologist will talk to you before surgery, so you can relay to him your past experiences with anesthesia.
Will be praying for you alot today and in the coming days, sammy.
Our God is in control!!
Jesus, I Trust In You!!! Posted by Lymetoo (Member # 743) on :
PRAYING!!
Posted by Sammi (Member # 110) on :
sammy, I am so glad it was a misunderstanding.
Best wishes today, check back in when you can.
Posted by momindeep (Member # 7618) on :
Thinking and praying for you today. God is good. Will be waiting to hear from you as soon as you can...will continue the prayers.
Posted by susank (Member # 22150) on :
Sammy somehow I missed these updates. You are always in my prayers. Will be moreso today. All will go well - I just know it will.
Posted by Lymetoo (Member # 743) on :
Sure hope someone in her family can update us soon.
Posted by momindeep (Member # 7618) on :
I am with you tutu...waiting to hear something.
Posted by sammy (Member # 13952) on :
Hi friends,
I'm home Feeling tired and very sore.
The procedure went well. My nurses, doctor, and anesthesiologist were great.
They gave me a large amount of versed, fentanyl, and propofol. I still woke up during the procedure! Yikes right!!!
The anesthesiologist was holding my hands and she was like "oh my gosh, are you really awake?" I laughed, said "yes" and started talking to her.
At least I didn't feel any pain so she just kept telling me not to move and held my hands. It was weird that I was awake for so long.
She said she gave me a ton of medicine so she was shocked when I woke up before the procedure was over, before recovery!
At least by the time I woke up the doctor had already started introducing the cement into the second vertebrae so the horribly painful part was over. Glad I didn't wake up a little earlier!
I'm scheduled to have the next 2 vertebrae (T9 and T10) repaired on May 24th. That is the earliest insurance rules will allow so they went ahead and put me on the doctor's schedule so I won't have to wait until after they get it authorized. Sadly it is a month away. Stupid insurance rules.
Thanks again for your prayers. God was clearly watching out for me today Posted by Sammi (Member # 110) on :
sammy, I can't believe you woke up during the procedure! How scary. I am also glad you did not wake up during the more painful part.
What did they say your recovery would be like?
It is good that you will have two more done next month. This will give you time to heal and recuperate. If you feel you need to have it done sooner, I suggest contacting the CEO of your insurance company.
Thank you for letting us know how everything went. Get plenty of rest okay?
Posted by momindeep (Member # 7618) on :
Good news and so thankful that you will be able to get two more fixed soon.
Now you are cemented together!
Posted by pug7 (Member # 36995) on :
I have some of the same fractures as you, and have never considered this procedure. Studies have shown little long term benefit (as someone else posted) and there is a risk of the cement leaking and causing some serious problems.
It is a quick fix, but there are other ways to go. Calcitonin can address pain from the fracture as well as help with bone loss. Forteo will address your low parathyroid hormone level, which is probably your real problem. Diet and supplements. Exercise (Tai Chi is wonderful for this).
I still have kids who depend on me and did not want the risks of this procedure. So I continue to work on the pain and the bone issues.
Many women (and men) are in this position. A really good endocrinologist who specializes in bone density can be really helpful.
Posted by Lymetoo (Member # 743) on :
OH MY WORD!!! I can't believe you woke up!!!
Hope you are OK!!!
Posted by Dekrator48 (Member # 18239) on :
sammy,
It is so good to hear from you already.
I am thanking God that you are ok and you did not feel pain when you woke up during the procedure.
Praying for your full recovery from this surgery and that the next one will also be successful.
Keep us updated as much as you can dear friend.
Hugs!!!!
Posted by Silverwolf (Member # 9196) on :
Oh <<<<< sammy >>>>>,
Glad the surgery went well,that is amazing and a bit scary that you woke up during the surgery procedure.
Prayers continuing, and hopes for a quick full recovery!
from Silverwolfi and TxCoord too!
Posted by Dogsandcats (Member # 28544) on :
Bless your heart - you have been through the wringer - AWAKE!
praying - keep us posted....
Posted by sammy (Member # 13952) on :
Pug, I hear you. I'm glad you haven't had to consider the kyphoplasty procedure. There are risks but for me, there were even greater risks associated with doing nothing.
Maybe I should try to explain my situation a little better.
My rheumatologist is (in my opinion, slowly) working me up to see why I have the osteoporosis. He is not willing to start the Forteo or any other treatment until I have a diagnosis.
I wish that someone would go ahead and prescribe the Forteo for me. My PCP, LLMD, and this doctor today all keep telling me that I need to start treatment ASAP, yesterday!!! They warn and I know that I am at high risk for more fractures. Problem is, I can't prescribe for myself.
You said that the kyphoplasty looks like a "quick fix", maybe so. Basically it is going to keep some of my vertebrae from crumbling while my doctors figure out what's going on.
It will take months before the forteo and other necessary treatments start to help strengthen my bones. I already take D3 +K2, Calcium, Magnesium. I'm going to start taking strontium.
Over the course of just a couple weeks, between the initial x-ray images, MRI, and bone scan you can see an obvious progression of compression. The bones are getting crushed more. I even had another fracture on the bone scan 2wks ago.
The bone degeneration is progressing. I went from being about 5ft 5in (measured in January) to about 5ft 3in (measured in march). The horrible pain and fractures started in february.
So really, would you just sit there and let 7 bones in your back continue to get crushed when you could do something to stop it? Let me answer that, no you can't sit. It hurts too much!!!
You put a cast on your leg when it is broken to stabilize the bones. It provides pain relief and makes sure that the leg heals properly. It gives you something to stand on. Would you like standing on a broken leg without a cast?
Well, the kyphoplasty is like an internal cast for my fractured vertebrae. They've only fixed 2 of the 7. So 5 are still crushed and fractured and unstable.
It hurts for me to breathe, it hurts to laugh, it hurts to cough, any movement causes excruciating pain. I can't even stand long enough to brush my teeth. I can't sit up for more than a few minutes.
Pug, I'm sorry I know you are only trying to help me. I'm just so frustrated by the whole situation. And in so much pain. I will probably delete this tomorrow when I'm thinking more clearly.
Posted by Rumigirl (Member # 15091) on :
Oh, sammy, thank God that you got 2 vertebrae fixed today, and that it went ok---in spite of waking up during it. Yikes!
When you're able to, I would suggest fighting the insurance ruling that you wait a month to do the next 2, and then more of the same. Make a complaint to your state Attorney General's office Health Bureau. As I said, do it on an emergency basis, as it is an emergency! But that will have to wait until you can even do such a thing.
About that fairy godmother . . !!! We'll all keep praying for your continued recovery.
xoxox (gentle hugs, however!)
BTW, did you get enough pain meds, I hope? By now you certainly should be able to get them.
Posted by Silverwolf (Member # 9196) on :
<<<<< sammy >>>>>,
Thinking of you, and continuing in prayer.
Hope the recovery is continuing well,and the pain is lessening more and more.
Jus' Silverwolfi here
Posted by Dekrator48 (Member # 18239) on :
sammy,
I wish I could take away all of your pain.
You have been through so much. Only you know what is best for you and what you need to do.
I am continuing to pray for you dear friend.
Hugs!!
Posted by Lymetoo (Member # 743) on :
sammy... there is no need to remove what you posted. I pray you are coping today.
Posted by Rumigirl (Member # 15091) on :
Yes, we're all thinking of you and praying that you are healing well. Keep resting. I'm sure you need lots of sleep after all the stress and pain that you have been through.
xoxo
Posted by sparkle7 (Member # 10397) on :
We all have to do the best we can with what is available. I hope the operation helps. You are in a rough position either way. Maybe having some time in between procedures will let you see if it actually will help...? Just a thought. I'm not sure what else you could do. I don't know enough about why this is happening to you.
I'm sorry you had to suffer through this. Prayers for the strength to get you though it all.
Posted by sammy (Member # 13952) on :
*Update 4/23*
I have good news friends! My back is starting to feel a little better
After the kyphoplasty procedure I had much more pain. It was hard to tell what was from all the fractures and what was from the surgical procedure. It was all just a jumbled mess of pain.
So now that the surgical pain is letting up I can feel more what is going on. Some exciting things, my back feels a little more stable! I can already tell that it has helped a great deal with this. It is easier for me to move, easier for me to stand up (though I still can't stand longer than a minute or two). The pain at that lower spine level is better too.
My most happy surprise outcome from this procedure is that I can eat again (weird, I know)! Since I've had the fractures I've struggled with being able to eat and keep my food down. It literally felt like my stomach was folded over on itself. I had to eat to take my medicines but I often would get sick 4-6hrs later... So I needed to eat but I couldn't, horrible situation. It is better now, Thank God!!!
I knew that severe kyphosis could cause GI symptoms but I did not know if they would be reversible with kyphoplasty. I assumed that more fractures would have to be fixed before I might experience any relief.
I hope I'm not speaking too soon and this is just a wonderful break in symptoms. I haven't had a break (symptom relief) like this though since the pain started.
My doctor's office called today to move my appt for the Kyphoplasty procedure for T9 and T10 up to May 14th. My doctor was upset when he saw that I was scheduled to wait until May 24th. So now my wait will be 10 days less
Thank you friends for praying for me. I'm so excited to be seeing some improvements. It's nice to have hope that I really am going to get better.
Posted by Lymetoo (Member # 743) on :
PRAISE THE LORD!! Posted by Spindleshanks (Member # 32556) on :
Yeah!
Posted by Dogsandcats (Member # 28544) on :
I am so happy for you, God is good!
Posted by Rumigirl (Member # 15091) on :
Halleluliah!! (sp?).
I'll send you an email with more.
Posted by Dekrator48 (Member # 18239) on :
That is wonderful news, sammy!
Still praying for you. God is faithful and He does hear our prayers!
Posted by Sammi (Member # 110) on :
sammy, I am so glad things are improving for you on multiple levels!
I hope you continue to improve.
Posted by TF (Member # 14183) on :
Praising God for you and every improvement!!
Posted by pug7 (Member # 36995) on :
Sammy, I HAVE had to consider the Kyphoplasty. I was too afraid of the cement leaking, honestly. I have multiple fractures as well, and know how bad the pain is right after (the pain gets better but never goes away entirely, and can be revived with the wrong movements, so I have to be very careful.)
I have experienced problems with eating and breathing, and even changes in heart rate, when I sit wrong for a long time, or reach, or lift something heavy. These effects last for days, or even weeks. I do Tai Chi and other things to try to align and stretch the area I have left on my spine, so there is enough room for organs like GI system and lungs to function better. But that's all I can do. I also acquired scoliosis from the fractures.
I have written to caution that kyphoplasty isn't the answer for everyone, but with things happening so fast, I can see that you had to do some. I also wrote to tell you that my doctor told me to beware of using a brace too much, and to keep my muscles from atrophying by trying hold myself up, painful as it might be.
I have had months when I could not stand up, sit or lie down. There are no other choices, right? I could not hold a small glass of ginger ale (I remember this, at a party).
So the thing is, and this is what I meant about "short term fix," the new cement structuring your spine can help what has already happened (and again, calcitonin is good for the pain, I cannot take it due to allergy to salmon and wish I could- it is a nasal spray- especially good right after a fracture).
But it looks to me like your main problem is low parathyroid hormone, which is what Forteo is. Even though it may take awhile for it to build bones, I would speculate that it will IMMEDIATElY stop bone loss and reverse the low levels of hormone that you have.
Isn't anyone worried about more fractures, not only of your spine but wrist, foot, neck, femur, etc?
I have a great book by someone who was in your position. It is "The Whole Body Approach to Osteoporosis." Author R. Keith McCormick. He did do biphosphonates for 6 months to stabilize things. But they do make Forteo less effective, so taking Forteo first and then Reclast would work better.
Here is the reason for delay in treatment: Forteo is expensive!! They need a diagnosis to get insurance to pay for it. Your parathyroid is low. Did they say it is not low enough to get Forteo? You have several "low impact" fractures which means severe osteoporosis, with a score of -3 on your scan. I would push them to do Forteo if you can, as soon as possible, because although the kyphoplasty may have restored some vertebral height, it only addressed an effect, not a cause, as you well know.
By the way, I have lupus and cannot go in the sun (no natural D), am allergic to salmon (no calcitonin), am allergic to dairy products and oj (no calcium that way), allergic to soy and bioidentical hormones, they don't want to do Evista because of the lupus, biphosphonates by mouth cause esophagitis, and the MD's agree I am too sensitive to risk Reclast and have a drug in my system long term that I might react to. Prolia is new but suppresses immune function (though that can help lupus). I tried Forteo but had a bad reaction, so they are doing desensitization with me starting next week. (I was treated for Lyme for 6 years and improved but not that much.)
So I am one person here who has been where you are and can tell you it is possible to live okay with what you have in terms of fractures, but I do fear that delay in getting you on Forteo might mean more troubles. And there are many bumps in the road of treatment for people like us (immune problems, Lyme etc.) But it can be okay.
Finally, how are things in terms of space around your spinal cord? Any narrowing?
p.s. orthopedist wanted to do kyphoplasty on me, not neurosurgeon...
Posted by pug7 (Member # 36995) on :
pps Just thought of something. Many doctors don't know this. The first month of Forteo is FREE. They give you an injection device that is full of enough meds for one month. My PCP could not prescribe because insurance needed to be worked out. But the specialist started me anyway, and then her staff worked out the insurance afterward. So that is one thing to mention to an MD to avoid delay regarding insurance. Hope that helps.
Posted by fflutterby (Member # 28081) on :
sammy this made my day, I am so very thankful that God has answered our prayers for you. Will continue to pray for your continued improvement !! Posted by sammy (Member # 13952) on :
Thank you for understanding Pug. I really am sorry to hear that you are suffering with this too.
I would not have chosen to do the Kyphoplasty unless absolutely necessary. As you have pointed out, there are risks, like cement leaking, worse infection could set in... These things scare the daylights out of me.
I've only been wearing my back brace for short periods of time like you said because I don't want my muscles to become weak. None of my doctors warned me about this. I am supposed to see a physiatrist (PM&R doc) soon so maybe they would have told me?
My LLMD's NP seems to be the only one truly concerned about my current condition. My rheumatologist and PCP have not stepped up to prescribe the Forteo yet. I really don't understand why not. My z score is -3.8, that is osteoporosis. I hope that my LLMD will just go ahead and prescribe the Forteo for me soon. I really don't want any more fractures!
I have not seen my MRI reports yet to know if I have any spinal stenosis (I will get a copy soon). No one has mentioned it to me yet. But I know that doctors usually only tell us what they want. So it doesn't mean that that our results are normal. That's about clear as mud, right?
For example, I had a IV port placed in January. The x-ray to confirm the placement revealed that I had pneumonia! I had surgery in the hospital and no on bothered to tell me that I had pneumonia show up on my chest x-ray!!! During that time I had been having daily fevers, fluey feeling, increased fatigue, difficulty breathing...
No wonder I kept getting sicker until my LLMD started me on a strong IV antibiotic.
Pug, thank you for taking the time to help me and share your story with me. I greatly appreciate your advice. I do hope that you will be able to start to tolerate Forteo and start to feel better soon.
Thank you EVERYONE for continuing to be so good to me, for all your kind thoughts and prayers Posted by pug7 (Member # 36995) on :
I hope an answer is found soon. And yes,I guess I have learned to get all records!
I was in the osteoporosis clinic in Boston last week. A man in his 40's or 50's maybe, was walking around with a Forteo kit just like mine (it comes in a blue case with a handle) and we got talking.
He and I agreed that noone understands the pain of this, and neither of us had really talked to anyone about it, nor had we gotten any support from anyone like family or friend. He seemed bitter about it, but I am used to that kind of thing. There are a lot of things that people don't understand.
People on here are supportive at least.
The pain will ultimately be bearable for you and you will be okay, if not pain free. I just hope an MD addresses the root cause.
My only parting words concern antibiotics. Just make sure that whatever antibiotics you are on, do not contribute to bone loss.
Take care and good luck! Thanks for your kind words.
Posted by nonna05 (Member # 33557) on :
WOW! You poor, strong ,sweetie.......... So very much to go through..... Am praying for you..
It's amazing what others said on post.
I had know idea about most of this and have had back issues for years... I guess doctor's can only focus on one thing at a time.
That was so wonderful that your new doc saw the schedule and moved thing's up.
Is he one that could order this Forteo med for you??
By brain still hasn't grasp what it does.
What kind of do was he ?? The radiologist guy?
You had an appt . at the start of this post with an Immunologist?? Was that right?? How did that go???
It's makes me so upset that these doctors pass us around ,when we're so sick in the first place and have to guess and push .
i THINK THEY ARE TRYING, IT'S JUST SEEMS LIKE IT SHOULD BE EASIER TO PUT 2&2 TOGETHER.
Anyway, God love you, keep you, hold you and send his mighty warrior angles to cover you.......
So much for so young, I pray the Lord restores what the locust's have taken and you have many ,happy years of health ahead of you.. Nonna
Posted by sammy (Member # 13952) on :
*Update 5/12* (actually it's 5/13 because it is past midnight so call it whatever day you want!)
Hi friends, it's been awhile since I've give you all an update.
I'm having surgery on Monday (5/14) @ 7:30am. They are going to repair 2 more vertebrae (T9 and T10).
I have mixed emotions going into this. I really don't want to endure the pain of recovery again. Yet I so desperately need this surgery to fix and stabilize my fractured vertebrae.
The pain (of the fractures) has been unbearable, excruciating. It's starting to wear on me emotionally. I almost feel like I'm a prisoner in my own body. I can barely tolerate sitting for a few minutes now and the pain is keeping me awake at night.
So, I really need this surgery to help. Afterwards 4 out of the 7 fractured vertebrae will be fixed.
Please pray for my doctor that God will guide him in his thoughts and use his hands to treat me well. Please pray for the anesthesiologist that she will medicate me properly so that I will not feel pain and that God will bless my nurses and the rest of the medical staff to take good care of me.
And please pray for me that God will use this surgery to help my body to heal. That He will prevent any complications. That he will help me to trust in him and not be afraid.
Thank you friends You have been more than good to me.
Posted by TxCoord (Member # 9204) on :
"Please pray for my doctor that God will guide him in his thoughts and use his hands to treat me well. Please pray for the anesthesiologist that she will medicate me properly so that I will not feel pain and that God will bless my nurses and the rest of the medical staff to take good care of me.
And please pray for me that God will use this surgery to help my body to heal. That He will prevent any complications. That he will help me to trust in him and not be afraid."
Amen and Amen! Silver and I stand with you (or lay on the table which ever you prefer! ) during this time.
Posted by nonna05 (Member # 33557) on :
Lord be with you Monday, watch over and protect you. May He shine His face upon you and keep you in the shadow of His mighty Love and Grace.....
Lord let her not wake up until they are done and that the work is your perfection through their hands.
Sammy , know that so many are praying for you and love you...I know it's through computer ,,but we do. Nonna
Posted by Carol in PA (Member # 5338) on :
Sammy, I said a prayer for you too.
There is something that can help speed recovery from surgery, and that is LED light therapy. It reduces swelling and pain, and helps bones heal.
I hope everything goes well for you.
Posted by Sammi (Member # 110) on :
sammy, I totally understand when you say that this is wearing on you emotionally and that you feel like a prisoner in your body. I have felt like this so many times even if it is for a different reason.
I am praying for a safe, successful surgery on Monday and for strength during your recovery. Envision all of your fellow Lymenet warriors surrounding you with their support.
Please let us know how you are doing when you are able.
Posted by Lymetoo (Member # 743) on :
Praying for ALL of the above! May God heal you perfectly and remove your pain.
Posted by lightfoot (Member # 2536) on :
Dear sammy,
My heart goes out to you. I hope you are able to get this sorted out and get the much needed relief.
You are in my thoughts and prayers.....
Posted by TF (Member # 14183) on :
Yes, sammy, I am praying this exact thing for you.
And, that God will bless you mightily through this ordeal.
Posted by debilyn (Member # 35753) on :
Prayers going up for the best possible result for sammy. God bless you, girl, and take away your fears.
Posted by momindeep (Member # 7618) on :
Will be praying much for you Sammy. So very sorry that you have to endure such stress and pain...I really am.
Posted by Alexandru Matei (Member # 37348) on :
Oh, my!
Hang in there, it will get better. It has to!
Alex
Posted by fflutterby (Member # 28081) on :
Keeping you and all of your Dr's and nurses in prayer sammy. Big (( Hugs )) for you. God is good and loves you so much.
Posted by sammy (Member # 13952) on :
Thank you so much for praying for me.
I went this morning at 7:30am, they got me all ready for the surgery, was just basically waiting to go...
Until the doctor discovered that they didn't have the special bone cement that he had ordered for me. What a bummer.
So he sent me home because they couldn't get it before 1pm. Now I will have to return for surgery at 1:30 pm today.
I'm super tired but just pray that everything goes well later today as God has planned.
Posted by Dekrator48 (Member # 18239) on :
Aww, sammy, so sorry to hear that your surgery was delayed until later today.
I am praying for you and the medical team.
God is in control.
Posted by Rumigirl (Member # 15091) on :
We are all praying that the surgery went well, and that you heal quickly and well. Lots of love an prayers coming your way from so many of us----I'm sure way more people than have responded here.
When you are up to it, which probably won't be for a while, let us know how you are doing.
I know you can't possibly think beyond this now, but I do hope that the surgeon can fix more vertebrae, too. (Along with God fixing them, of course!).
Posted by Silverwolf (Member # 9196) on :
<<<<< sammy >>>>>,
Are you doing okay? Did they do the second surgery?
Anyone heard anything??? We are continuing to pray for a speedy recovery!!!
Jus' Silverwolfi and Txcoord too...a wondering how it's going!
Posted by Rumigirl (Member # 15091) on :
I spoke to her. She had the surgery. She can't sit up much though, so it may take some time for her to come back on and report more. I'm sure that continued prayers would be appreciated. I am sure that that is already happening!
Posted by Silverwolf (Member # 9196) on :
<<<<< Rumigirl >>>>>,
Thanks for the info',we'll continue in prayer,glad she's come thru, and prayers going up for a good safe and quick recovery !!!
<<<<< sammy >>>>>, gentle hugs,and lots of prayers, rest as much as you can !!!
Jus' that Silverwolfi and TxCoord here, and all the Lyme family too !!!
Posted by Lymetoo (Member # 743) on :
Thanks, rumi!
Posted by Rumigirl (Member # 15091) on :
I spoke to her again. She wants to come on Lymenet, but can't sit up really. It was good to talk to her both times. I swear that she is a saint by now---probably many times over!
The love and prayers of everyone are a good support, as she truly needs it. I just wish that there could be someone there to physically support her in all ways. Yes, she's with her family, but so much more is needed. Many here are also in need of help that isn't available.
Posted by momindeep (Member # 7618) on :
Come back to us Sammy when you can. Continuing prayers for you.
Posted by Dekrator48 (Member # 18239) on :
Praying for sammy!!
Posted by sammy (Member # 13952) on :
*Update 5/20/12*
I'm back!!!
Sorry it's taken me so long to come back and give you all an update. I don't have a laptop computer so I literally have to come and sit in my old Ikea chair to use my desktop computer.
I've tried a couple times but haven't been able to tolerate the pain. So I probably won't be on here long but I really missed you all and I wanted to thank you...
Thank you so so so... much for praying for me! I did eventually have the surgery on monday and it went well.
This time I woke up during the surgery many times. I remember telling them that I had pain and it hurt. Thankfully, each time I said anything the anesthesiologist was quick to give me the medicine to put me back to sleep and out of pain.
Afterwards she told me that she had never experienced anything like what had happened during my surgeries. She couldn't believe how much medicine she kept having to give me and I still kept waking up and having pain. I could tell that she was disturbed by it. It scares me too, I don't like waking up.
The rest of the week was emotionally and physically difficult because I was not able to rest as much as I should have. My rheumatologist told me that he would not treat my severe osteoporosis if I chose to continue the antibiotics. This was unexpected. Stopping the antibiotics would literally be a death sentence for me right now because of my immune deficiency.
My PCP also decided to stop prescribing my pain meds and only refilled 3 days worth after my surgery. This is after he told me that he would continue prescribing them for at least 2 more weeks until my next follow-up when we would discuss a referral to pain management specialist (at my request).
My insurance also does not want to pay for the medicine that I need to stop my bones from breaking. This is after my doctor got a prior authorization.
So I've been majorly stressed and frustrated and in pain.
I greatly need and appreciate your prayers.
I feel so selfish asking for continued prayer knowing that others are struggling too. I also feel so disappointed, I didn't want to post until I had more positive to say than negative.
As of right now I am only scheduled to follow-up with my doctor in a couple weeks after my back has "healed". There are no more surgeries planned right now.
My back feels more stable but overall the pain is not much better yet. This is extremely disappointing. By now the post-op pain should be gone so what I'm feeling is probably still from the 3 known fractures that have not been repaired and who knows, maybe I have a new fracture in there too.
I'm going to call and try to move my appt up so that maybe I can get things moving faster. Maybe I need more imaging studies. Maybe I have something else going on that is causing pain also. I don't know. All I know is that the pain is still unbearable.
I also can't help but wonder if i process anesthesia meds so quickly, is this why my the pain med that I have at home hardly helps at all? I think it's a good possibility.
Thank you friends, thank you so much for caring for me and praying for me and sticking by my side even though I've not been here much lately.
You are truly a blessing to me and I pray that you will be blessed too Posted by Dekrator48 (Member # 18239) on :
Wow, sammy, thank you for the update.
I think you are an incredibly strong young lady.
Please don't ever feel selfish asking for prayer.
You have, and still are, going through so much.
Is it possible to find another Rheumatologist who may not be closed minded about the antibiotics?
I am praying fervently for you, dear friend.
I am praying that all those things work out for you and you will be pain free and healed.
Wish I could be there to help you.
Big hugs!!
Posted by momindeep (Member # 7618) on :
Okay...although this report from you isn't what we had all hoped for...I will pray that you won't become discouraged.
The Lord knows all things effortlessly...each minute detail. I will ask Him to smooth your path Sammy, for He knows what to do.
I will also ask the Lord to make sure that you know He is with you and is lovingly in charge of all things that make up your life.
I will ask Him to give you comfort in knowing that He will do all things for you because He loves you so and that this Truth will pierce your heart and mind so you can rest assuredly that all will be well.
Trust in the Lord for He cares for you.
Thanks for the update.
Posted by TxCoord (Member # 9204) on :
Father we pray that You would give Sammy peace in her heart and mind. That peace that takes away all our feelings of inadequacy.
Your peace, Father, that surpasses our understanding and will displace all of the attempts by the enemy to gain any foothold.
Let Your Holy Spirit surround Sammy and fill whatever room she is in so that others feel that Presence. Let the sweet aroma of the prayers of the faithful ascend to Your throne and be pleasing to You and grant us our request -
that Sammy be healed in the name of Jesus. That name above all names. That name which, at its very mention, the world trembles, believers willingly fall to their knees for and that any physical, medical issue must surrender to.
That name of Jesus, King of Kings, Lord of Lords, the Almighty, the Door, the Savior, the Healer!
Rest well friend Sammy, safe in the arms of faith, buoyed up by the support from all of us. Sleep the sleep of healing in your body. Sleep the sleep that brings rest to the body and to the mind.
And all said Amen.
Posted by TF (Member # 14183) on :
I understand that the pain does not go away right after the surgery. It can take a few weeks.
Praying that you are going to experience pain relief.
Posted by nonna05 (Member # 33557) on :
Praying for you... Can't believe they would hold back pain meds at this critical time....
If they had 5 minutes in your body, what would they want??
I'm sorry you have to go through this.
I'm another one that has woken up in the middle of several procedures . Especially if Fentynal sp? was part of it...Are you by chance on Rifampin???
That can lower effectiveness of so many medicines..
Either way I pray you get healing and pain relief and peace......Head to toe..
Nonna
Posted by n.northernlights (Member # 17934) on :
processing pain meds is a gene thing, CYP450 some are just fast processors.
Your PCP or LLMD should be able to prescribe the osteoporosis meds -- does not need to be a rheumatologist.
Hubby's PCP prescribed his reclast (done as out patient in the hospital) and has discussed possibility of forteo depending on next bone density scan results.
If I remember correctly the reclast injection bill came to about 3500 but of course insurance cut that back -- both times hubby had already maxed out his out of pocket for the year so did not owe anything.
Bea Seibert
Posted by lyme in Putnam (Member # 11561) on :
Sammy, sorry for what you've geen going through. God bless.
Posted by Lymetoo (Member # 743) on :
Why isn't the surgeon compassionate enough to prescribe pain meds? I have pain meds and haven't even had surgery.
praying for you, sammy Posted by Marnie (Member # 773) on :
Spontaneous compression fractures...my mom (much older) had those happen.
Osteoporosis.
Kyphoplasty. Literally "cement" the break. Ouch gone immediately.
However, the danger is that the vertebrae above or below may then break.
Find a good orthopedic doctor willing...
Posted by soccermama (Member # 35101) on :
Sammy,
The mystery of suffering is beyond comprehension. I just ask the Father of compassion declare that
enough is enough. May His tender mercies sound from the heaven and set you free.
I think you are very brave and courageous. Do not let the enemy whisper lies to you. You are not selfish.
Blessings.
Posted by Marnie (Member # 773) on :
I know...docs in Minnesota would not cement.
She couldn't move...lost a lot of weight very quickly. Wouldn't eat or drink because she did not want to have to use the bathroom in "rehab"...couldn't rehab! Idiots! Pain way too severe.
$16,000 private plane to return to Sarasota to have mom's vertebrae cemented. I'm not kidding.
Instant relief.
You have my sympathy and my prayers!
They will USUALLY heal on their own, but it takes many weeks.
Posted by sammy (Member # 13952) on :
Thank you so much for your continued prayers and support. I can't tell you how much it really helps. I just feel so loved and so blessed.
There have been times when the pain has so overwhelming and I've wondered why am I here God? And I've thought it might be better if I didn't wake up in the morning.
I know that sounds awful but when you are really suffering with no end in sight and little help your mind starts to run away with thoughts that you don't like.
Knowing that you all are here for me and clearly love me, I could feel it and it has helped me so much. I'm not kidding, I'm not exaggerating.
I really do thank you for being here for me.
I don't have to leave my house to find my friends because you all are right here Posted by Sammi (Member # 110) on :
sammy, I think we have all felt like you describe. These diseases are very tough to deal with on so many levels.
Lymenet is a great place for support!
You really have been tested, and you are so strong. Hang in there okay?
Posted by Lymetoo (Member # 743) on :
We hear ya, sammy! Yes, we can relate!
Posted by sammy (Member # 13952) on :
Since the pain has not improved my doctor ordered another MRI to check to see if I have any new fractures, to look at the state of the un-repaired fractures, and make sure that there isn't anything else going on in my back that might be causing this excruciating pain.
My MRI is scheduled for wednesday afternoon. Oh I really really hope that there is nothing else going on with my back. I hope that it is just the 3 un-repaired fractures that are still causing me pain. If they are not healing well then my doctor said that he will do the kyphoplasty procedure to fix them.
My LLMD has taken over and prescribed the Forteo to treat my osteoporosis. He managed to get me a sample so I could get started on it right away while they work on getting insurance approval and such.
I'm also going to start seeing a physiatrist (aka PM&R doctor). She will eventually help with rehab. Right now she said we can only be safe and treat the pain while we wait for the MRI to see if I have more fractures that need repaired. She was extremely nice, a God send!
So much has happened this week.
Posted by momindeep (Member # 7618) on :
I will be praying for you Sammy. You enter my thoughts throughout my days and I am keeping petitions for you going to Lord each time.
The Lord is only good.
Posted by Sammi (Member # 110) on :
sammy, you are a pillar of strength!
Prayers continue for you. I hope your MRI will be clear.
I am so glad your LLMD was able to get you started on Forteo and get you a sample since it is so expensive.
This has been a tough week for many of us, let's hope next week is much better!
Posted by sammy (Member # 13952) on :
*Update 6/8/12*
I had a follow-up to get the results of my MRI today. Was not able to see my regular doctor, had to reschedule and see his partner instead (bad idea...).
He said that my MRI was "normal"! That I will "have to get used to the back pain"!!! "because I'm a complex patient with many medical problems that can be contributing"?!?
I broke down and cried, he looked at me unphased. (Before my appt I was praying that I would remain composed this overwhelming pain sometimes gets the best of me). This unempathetic doc has no idea what all I'm going through right now. The only reason I had to see him was because I'm traveling to see my LLMD next week and had to change my appt with my normal doc.
Before I left I got a copy of my MRI. It was not normal. It said that I now have 10 vertebral fractures, T3- T12 (only 4 of these my doc has fixed). No wonder I still have extreme pain!
It also said that I have degenerative disk disease throughout the thoracic spine.
They also found a small nerve sheath tumor and recommended a follow-up MRI with contrast for further evaluation.
They also found a small lesion on my liver which they noted is probably benign.
So not "normal"!!!
The doctor did recommend that I go to a chronic pain clinic. I told him that the percocet I'm taking now barely helps. I can't live like this, I can barely shower and take care of myself.
He recommended having my doctor try a nerve block. If that works they can do another procedure to kill the small nerves in that same area that are causing me pain. I think it would only help for a small area.
He also said that I might be a candidate for a spinal nerve stimulator. It's an implanted electrical device that helps relieve pain.
I would think that they would go ahead and treat the other fractures. Unless it is now too late. And now I'm stuck with the pain. Forever.
I just can't handle this.
I'm traveling to see my LLMD next week. He's concerned about all these weird medical things happening all at once. While I'm so far from his office.
Please pray for travel mercies. That my family and I will have a safe trip and that I will feel OK. Please pray also for my LLMD. That God will bless him, guide his thoughts and decisions to treat me well.
I know that I am an unusually sick patient. I happen to have a bunch of weird and rare things going on with me that complicate the Lyme picture. I didn't chose these things. If I could, I would chose to be healthy.
Just because I'm complicated and sick doesn't mean that they should give up on me, that means I need more help. I need my LLMD to remember this and please not give up on me.
Posted by Sammi (Member # 110) on :
sammy, it sounds like the doctor you saw was absolutely horrible to put it nicely. I recommend making an appointment with the original doctor to see what he says.
Thank goodness you got a copy of your MRI. How many people would have listened to this uncaring doctor because they did not know better?
I pray you will have a safe journey to the Lyme doctor and the strength you need for the trip. I know it is thoroughly exhausting especially when you have so many things happening at once.
I believe you are in the best hands possible with your Lyme doctor. If anyone can help sort this out, he can.
Hang in there okay?
Posted by momindeep (Member # 7618) on :
I am praying for you Sammy and will continue to do so each and every day. The Lord said He would never leave you or forsake you and His Word is golden.
I am so very sorry this is happening to you. I will ask the Lord to bless you and keep you and help you in extraordinary ways.
I cannot imagine your pain, but the Lord knows. He knows every molecule of your being and I will ask Him to set things right.
I will also ask the Lord to give you some earthly help...someone to lend a hand or ear to give you some rest both emotionally and physically.
Thanks for the update, I was wondering about you and am thankful for details so I can pray accordingly.
Posted by Tracy9 (Member # 7521) on :
Praying for you....what a jerk that doctor was!!! I am so sorry you have even more problems with your back. I am so so sorry you are living in such pain. My mother had horrific back pain and she did get a nerve block which helped her immensely, and acupuncture was the only other thing that helped, and the thing that helped her the most.
Will continue to pray every day. I hate to hear of you suffering like this. I can't imagine how you are enduring it.
Posted by Rumigirl (Member # 15091) on :
Oh, sammy, this is beyond the beyond!!! Please make an appointment with your regular dr ASAP. Stress that it is an emergency, and get on a cancellation list, too, for anything sooner. This truly is an emergency. You don't want to wait until it's too late to do more kyphoplasty.
It would be good to make an appointment as soon as possible for pain management to see you through this time.
As a heads up, I always get the test results BEFORE the appointment, so I can discuss it with the dr. But sometimes they are hard-nosed about it, saying that they can't give it to me until the dr signs it. You likely tried.
Is your mom or anyone able to go with you next week to help?? That sounds so difficult for you right now. It would be good for you to see him. I just worry about the physical stress of the traveling. Of course, ask for help at the airport, in terms of either a wheel chair or one of those cart things, if it would help, which I'm sure it would. I'm not sure if the wheel chair has to be ordered in advance or not.
If there is any way to make sure that you have enough pain meds for the trip please do. It would help for sure.
We will order up an angel to sit on your shoulder for this trip! (Well, maybe not sit on your shoulder . . . right above your shoulder!).
Lots of love and prayers to you.
Posted by debilyn (Member # 35753) on :
You got it. Prayers going up for safe travel, successful doc visit, and for relief from your pain.
Posted by jdp710 (Member # 34017) on :
sammy,
Please look into PEMF. I posted back in march on it but I highly recommend this for you. Start calling around to see who has one available in your area that can treat you such as with a PEMF-100 device or similar PEMF device.
That is the best thing I know available that will reduce pain and also heal the bones as well as turning on stem cells for repair for cases such as yours.
Here are some links of interest. The youtube channels from Dr. G from the channel longevity123 on youtube is always good to listen to.
quote:Bone Fractures - a group of 83 adults with ununited fractures were examined for the effects of bone grafting and pulsed electromagnetic fields for this study. Results showed a successful healing rate of 87 percent in the original 38 patients treated with bone grafts and PEMF for ununited fractures with wide gaps, malalignment, and synovial pseudarthrosis. Of the 45 patients that were not successfully treated with PEMF and had bone grafting, when re-treated with pulsing electromagnetic fields, achieved a 93 percent success rate. C.A. Bassett, et al.,Treatment of Therapeutically Resistant Non-unions with Bone Grafts and Pulsing Electromagnetic Fields, Journal of Bone Joint Surg, 64(8), October 1982, p. 1214-1220.
Examining the effects of pulsing electromagnetic fields on 125 patients suffering from ununited fractures of the tibial diaphysis, showed a healing success rate of 87%. C.A. Bassett, et al.,Treatment of Ununited Tibial Diaphyseal Fractures with Pulsing Electromagnetic Fields, Journal of Bone Joint Surg, 63(4), April 1981, p. 511-523.
Results of this study showed treatment with pulsed electromagnetic fields resulted in an overall success rate of at least 75 percent in patients suffering from tibial lesions. M.W. Meskens, et al.,Treatment of Delayed Union and Nonunion of the Tibia Pulsed Electromagnetic Fields. A Retrospective Follow-up, Bull Hosp Jt Dis Orthop Inst, 48(2), Fall 1988, p. 170-175.
This review article makes the following observations with respect to the use of pulsed electromagnetic fields in treating ununited fractures, failed arthrodeses, and congenital pseudarthroses. The treatment has been shown to be more than 90 percent effective in adult patients. In cases where union does not occur with PEMFs alone after approximately four months, PEMF treatment coupled with fresh bone grafts ensures a maximum failure rate of only 1 to 1.5 percent. For those with delayed union three to four months following fracture, PEMFs appear to be more successful than in patients treated with other conservative methods. For more serious conditions, including infected nonunions, multiple surgical failures, long-standing atrophic lesions, failed knee arthrodeses after removal of infected prostheses, and congenital pseudarthroses, PEMF treatment has exhibited success in most patients.17 C.A. Bassett, The Development and Application of Pulsed Electromagnetic Fields (PEMFs) for Ununited Fractures and Arthrodeses, Clin Plast Surg, 12(2), April 1985, p. 259-277.
Results of this study found that 35 of 44 nonunited scaphoid fractures 6 months or older healed in a mean time of 4.3 months during pulsed electromagnetic field treatment using external coils and a thumb spica cast. G.K. Frykman, et al., Treatment of Nonunited Scaphoid Fractures Pulsed Electromagnetic Field and Cast, Journal of Hand Surg, 11(3), May 1986, p. 344-349.
This double-blind, placebo-controlled study examined the effects of pulsed electromagnetic fields in femoral neck fracture patients undergoing conventional therapy. PEMF treatment was started within two weeks of fracture, and patients were instructed to make use of the electromagnetic device for 8 hours per day over a 90-day period. Results showed beneficial effects relative to controls after 18 months of follow-up. E. Betti, et al., Effect of Electromagnetic Field Stimulation on Fractures of the Femoral Neck. A Prospective Randomized Double-Blind Study,; Second World Congress for Electricity and Magnetism in Biology and Medicine, 8-13 June 1997, Bologna, Italy.
Results of this double-blind study showed significant healing effects of low-frequency pulsing electromagnetic fields in patients treated with femoral intertrochanteric osteotomy for hip degenerative arthritis. G. Borsalino, et al., Electrical Stimulation of Human Femoral Intertrochanteric Osteotomies. Double-Blind Study, Clin Orthop, (237), December 1988, 256-263.
In this study, 147 patients with fractures of the tibia, femur, and humerus who had failed to benefit from surgery-received treatment with external skeletal fixation in situ and pulsed electromagnetic fields. Results indicated an overall success rate of 73 percent. Femur union was seen in 81 percent and tibia union in 75 percent. M. Marcer, et al., Results of Pulsed Electromagnetic Fields (PEMFs) in Ununited Fractures after External Skeletal Fixation, Clin Orthop, (190), November 1984, . 260-265
This study examined the effects of extremely low frequency electromagnetic fields (1-1000 Hz, 4 gauss) on new bone fractures of female patients.Results led the authors to suggest that EMF treatment accelerates the early stages of fracture healing. O. Wahlstrom, Stimulation of Fracture Healing with Electromagnetic Fields of Extremely Low Frequency (EMF of ELF), Clin Orthop, (186), June 1984, . 293-301.
This study examined the preventive effects of low-frequency pulsing electromagnetic fields against delayed union in rat fibular osteotomies and diaphyseal tibia fractures in humans. Results indicated such treatment modulated and accelerated fracture union in both groups. A.W. Dunn & G.A. Rush, 3d, Electrical Stimulation in Treatment of Delayed Union and Nonunion of Fractures and Osteotomies, Southern Medical Journal, 77(12),December 1984, . 1530-1534.
This article discusses the cases of two children with bone malunion following lengthening of congenitally shortened lower legs. Pulsed sinusoidal magnetic field treatment was beneficial for both patients. F. Rajewski & W. Marciniak, Use of Magnetotherapy for Treatment of Bone Malunion in Limb Lengthening. Preliminary Report, Chir Narzadow Ruchu Ortop Pol, 57(1-3), 1992,. 247-249.
Results of this study showed that 13 of 15 cases of long bone nonunion treated with pulsed electromagnetic fields in combination with Denham external fixator united within several months. R.B. Simonis, et al.,The Treatment of Non-union Pulsed Electromagnetic Fields Combined with a Denham External Fixator, Injury, 15(4), January 1984, . 255-260.
Results of this study found electromagnetic field stimulation to be an effective treatment for nonunion among a group of 37 French L. Sedel, et al.,Acceleration of Repair of Non-unions electromagnetic Fields, Rev Chir Orthop Reparatrice Appar Mot, 67(1), 1981, . 11-23.
Results of this study found treatment induced pulsing to be beneficial in patients suffering from nonunions unresponsive to surgery. J.C. Mulier & F. Spaas,Out-patient Treatment of Surgically Resistant Non-unions Induced Pulsing Current - Clinical Results, Arch Orthop Trauma Surg, 97(4), 1980,.293-297.
In this interview with Dr. C. Andrew L. Bassett, a physician researching the use of pulsed electromagnetic fields for the past 30 years at Columbia University's Orthopedic Research Lab, Dr. Bassett notes that approximately 10,000 of the 12,000-plus orthopedic surgeons in the U.S. have used pulsed electromagnetic fields on at least one patient. Many such surgeons have incorporated the therapy on a more regular basis. He estimates that a total of at least 65,000 patients nationwide have received the treatment, with a probable success rate of between 80 and 90 percent. Use of the treatment has been primarily in patients suffering from nonunited fractures, fusion failures, and pseudoarthrosis.C.A. Bassett, Conversations with C. Andrew L. Bassett, M.D. Pulsed Electromagnetic Fields. A Noninvasive Therapeutic Modality for Fracture Nonunion (Interview), Orthop. Review, 15(12)1986 781-795.
Results of this study showed pulsed electromagnetic fields to have beneficial healing effects in patients suffering from difficult to treat and surgically resistant bone nonunions. This review article notes that the use of pulsed electromagnetic fields began in 1974, and that 250,000 nonunion patients have received the treatment since. The author argues that success rates are comparable to those of bone grafting, and that PEMF treatment is more cost-effective and free of side effects. The FDA approved PEMF use in 1982, although it remains widely unused due to physician misunderstanding and lack of knowledge concerning the treatment. A. Bassett, Therapeutic Uses of Electric and Magnetic Fields in Orthopedics,& quot; in D.O. Carpenter & S. Ayrapetyan, (eds.), Biological Effects of Electric and Magnetic Fields. Volume II: beneficial and Harmful Effects, San Diego: Academic Press, 1994, . 13-48.
This 7-year study examined data on more than 11,000 cases of nonunions treated with pulsed electromagnetic fields for up to 10 to 12 hours per day. Results indicated an overall success rate of 75 percent. A.A. Goldberg, Computer Analysis of Data on More than 11,000 Cases of Ununited Fracture Submitted for Treatment with Pulsing Electromagnetic Fields, Bioelectrical Repair and Growth Society, Second Annual Meeting, 20-22 September 1982, Oxford, UK, . 61.
This study examined the effects of low-frequency electromagnetic fields (1-1000 Hz) on middle-aged female patients suffering from fresh radius fractures. Results showed significant increases in scintimetric activity surrounding the fracture area after two weeks of EMF treatment relative to controls. O. Wahlstrom, Electromagnetic Fields Used in the Treatment of Fresh Fractures of the Radius, Bioelectrical Repair and Growth Society, Second Annual Meeting, 20-22 September 1982, Oxford, UK, . 26.
This study examined the effects of constant magnetic fields in patients suffering from fractures. Results showed that magnetic exposure reduced pain and the onset of edema shortly after trauma. Where edema was already present, the treatment exhibited marked anti-inflammatory effects. The strongest beneficial effects occurred in patients suffering from fractures of the ankle joints. G.B. Gromak & G.A. Lacis, Evaluations of the Efficacy of Using a Constant Magnetic Field in Treatment of Patients with Traumas, in I. Detlav, (ed.), Electromagnetic Therapy of Injuries and Diseases of the Support-Motor Apparatus. International Collection of Papers, Riga, Latvia: Riga Medical Institute, 1987, . 88-95.
Results of this study found that 10 hours per day of electromagnetic stimulation (1.0-1.5 mV) produced complete union in 23 of 26 patients receiving the treatment for non-joined fractures. A.F. Lynch & P. MacAuley, Treatment of Bone Non-Union Electromagnetic Therapy, Ir Journal of Med Sci, 154(4), 1985, . 153-155.
This review article looks at the history of pulsed electromagnetic fields as a means of bone repair. The author argues that success rates have been either superior or equivalent to those of surgery, with PEMF free of side effects and risk. C.A.L. Bassett, Historical Overview of PEM-Assisted Bone and Tissue Healing,. Bioelectromagnetics Society, 10th Annual Meeting,19-24 June 1988, Stamford, CT,
If you can't find a PEMF device available in your area you can try to look for a Tenant Biomodulator or scenar device but I can't vouche how well it would work other than testimonials online.
Posted by pug7 (Member # 36995) on :
Not sure if the PEMF would apply to spinal fractures, which are compression fractures and different from other fractures.
Sammy, dgenerative disc disease is pretty normal. Maybe that is what he was referring to.
If the MRI said 10 fractures, did he explain why he said those were "normal"? The picture doesn't make sense. Especially when he went on to make quite a few helpful suggestions. Why did he say that?
Editing to add: Sammy, Tai Chi helped me a lot. Find a class with people who have medical conditions. In my class, some people sit a lot, some have to be against a wall, and many are off balance, but we all benefit.
Your fractures won't hurt forever. And Forteo will do wonders. (I wish I could take it! I am in the same situation but had a horrible reaction to Forteo.) They are also using Forteo for arthritis. It will help you in many ways.
By the way, everyone gets a month's supply free while insurance is contacted. That little blue box is in refrigerators all over the country.
Posted by Sammi (Member # 110) on :
sammy, how are you? How did your appointment go? I hope it went well and that you made the trip okay.
Posted by hopeful4 (Member # 8486) on :
sammy,
Praying for you that all goes well for you, and as soon as possible!
I do not really know about this condition you have, but a couple thoughts came to mind to ease pain. I don't know if they apply to your situation but I'll give it a try:
One is a TENS unit. From wikipedia:
�Transcutaneous electrical nerve stimulation (acronym TENS) is the use of electric current produced by a device to stimulate the nerves for therapeutic purposes.�
�TENS is a non-invasive, low risk nerve stimulation intended to reduce pain, both acute and chronic.�
Second is a lidocaine patch called Lidoderm. The lidocaine is a local anesthetic, and it is in the patch. It works by stopping nerves from sending pain signals.
And third is a topical gel called Voltaran. It is a non-steroidal anti-inflammatory (NSAID). On-label it�s used topically for joint pain. It can be used successfully for other types of pain including back pain.
Maybe your doctor has some samples of the Lidoderm or the Voltaran for you to try.
So sorry you�re going through this, and wishing you a speedy resolution.
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Have 3days worth of Vicodin to help me through. Trying my best to get a good neurosurgeon. Was told that may have to wait another week or 2...
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I've always been the small one in my family, now I'm even shorter! Oh, this just broke my heart even more.![[bow]](graemlins/bow.gif)
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