posted
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.
Posts: 60 | From Maine | Registered: Jan 2012
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Rumigirl
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posted
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
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sammy
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posted
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 Posts: 5237 | From here | Registered: Nov 2007
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Dekrator48
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posted
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!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Sammi
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posted
sammy, I am so glad it was a misunderstanding.
Best wishes today, check back in when you can.
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momindeep
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posted
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.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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susank
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posted
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.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
Sure hope someone in her family can update us soon.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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momindeep
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posted
I am with you tutu...waiting to hear something.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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sammy
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posted
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 Posts: 5237 | From here | Registered: Nov 2007
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Sammi
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posted
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?
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momindeep
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Good news and so thankful that you will be able to get two more fixed soon.
Now you are cemented together!
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
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.
Posts: 108 | From US | Registered: Apr 2012
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posted
OH MY WORD!!! I can't believe you woke up!!!
Hope you are OK!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Dekrator48
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posted
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!!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Silverwolf
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posted
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!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Dogsandcats
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posted
Bless your heart - you have been through the wringer - AWAKE!
praying - keep us posted....
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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sammy
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Member # 13952
posted
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.
Posts: 5237 | From here | Registered: Nov 2007
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Rumigirl
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posted
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.
Posts: 3792 | From around | Registered: Mar 2008
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Silverwolf
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posted
<<<<< 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
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Dekrator48
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posted
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!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
sammy... there is no need to remove what you posted. I pray you are coping today.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Rumigirl
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posted
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
Posts: 3792 | From around | Registered: Mar 2008
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sparkle7
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posted
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.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sammy
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posted
*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.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Yeah!
Posts: 253 | From CA | Registered: Jun 2011
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Dogsandcats
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posted
I am so happy for you, God is good!
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Rumigirl
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posted
Halleluliah!! (sp?).
I'll send you an email with more.
Posts: 3792 | From around | Registered: Mar 2008
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Dekrator48
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posted
That is wonderful news, sammy!
Still praying for you. God is faithful and He does hear our prayers!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Sammi
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posted
sammy, I am so glad things are improving for you on multiple levels!
I hope you continue to improve.
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TF
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posted
Praising God for you and every improvement!!
Posts: 9931 | From Maryland | Registered: Dec 2007
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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...
Posts: 108 | From US | Registered: Apr 2012
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posted
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.
Posts: 108 | From US | Registered: Apr 2012
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fflutterby
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posted
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 !!
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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sammy
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posted
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 Posts: 5237 | From here | Registered: Nov 2007
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posted
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.
Posts: 108 | From US | Registered: Apr 2012
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nonna05
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posted
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
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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sammy
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posted
*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.
Posts: 5237 | From here | Registered: Nov 2007
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posted
"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.
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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nonna05
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posted
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
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Carol in PA
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Member # 5338
posted
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.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Sammi
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Member # 110
posted
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.
Posts: 4682 | Registered: Oct 2000
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posted
Prayers going up for the best possible result for sammy. God bless you, girl, and take away your fears.
Posts: 331 | From West Coast | Registered: Jan 2012
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momindeep
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posted
Will be praying much for you Sammy. So very sorry that you have to endure such stress and pain...I really am.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Nonna
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