posted
i have had knee pain in both knees for YEARS.
but back in dec. i fell (again) but this time it was really scarry, just fell very hard, on both knees, in my kitchen.
since then, i have had debiitating knee pain.
i could totally tell the difference between the lyme knee pain and the now different severe knee pain.
i finally went to the doc. got the mri, and although my husband and i did not expect it to be great news, we were not expecting it to be this bad either.
the ortho doc called the other night, and asked if he could speak to both my husband and i, which i found odd, but fine.
he explained how he could tell by my mri that i had been in severe pain for years. wow!
he also told me that i have hip and low back problems. again wow!
we told him that i had been unable to sleep in a bed in 5 years, as i cannot lie down, from the total body pain.
he then said a bunch of stuff that i cannot remember. but i did get.. acl bad, meniscus bad, torn muscles in thigh, thigh bone chipped, cartlige just a mess. (big shock)
he did say that my knee is very bad. and that he can tell that my fall did alot of damage, but that he also sees alot of damage from my LYME DISEASE, and REALLY NEEDS my llmd's opinion to come up with the best treatment plan.
he is very concerned about my recovery, and just how well i will do,
also worried about the anesthesia, as i have an arnold chiari malformation at my brain stem, and it can be very dangerous to put me to sleep.
i told him just give me concious sedation, and i will be fine.
i just thought omg. you want to talk to who?? you plan on including him? wow! NO doc i have ever seen has ever given my lyme doc a second thought,
when ever the issue of lyme or my llmd comes up it is just always brushed aside, or eyes rolled, you know what i am talking about.
but he was telling us that there is no denying when you look at my mri that the LYME has destroyed my joints.
of course we knew this, but have never had another doc. confirm this ever. it is always just you have arthritis.
he also wants ALL of my records, my husband told him i dont think you know what you are asking for.
he just said that he really needed them.
this dr. we met two years ago august, when my husband, who is a motorcycle police officer, had a terrible accident, was off work for 91/2 months. and he had done surgery on him.
otherwise i would not even be able to get in to him, as he ONLY does sports injuries, and will take police and firefighters.
we are very worried about my knees, but even more impressed with this dr. and the way he is treating this entire situataion.
he simply refuses to over look anything. how refreshing. and it is not about this belief or criteria, it is all about what is best for the patient. WOW!
sorry to ramble, but we are still is a bit of shock, first at just how bad my knee truly is (and he now wants to take a look at my other knee), second at this dr. and how he is treating this entire situation.
gives us a bit of hope i guess, and like my husband said i think we can be assured i am in the best hands at this point.
i will admit i am very worried about the recovery part. i am a BIG physical therapy advocate, and still do my exercises everyday.
as i honestly believe this is the reason i am still able to use my cane and have not had to go back to a walker.
but i am already in so much pain every second, i just get scared when i think about the after surgery pain, that might be a little too much.
i was really hoping that he would say you need to go through some p.t. and you will be better.
anybody else been through the knee issues i mentioned above? okay, i will go. thanks for listening.
-------------------- (((HUGS!!!))),daphne Posts: 232 | From ft. worth, texas, | Registered: Apr 2002
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posted
I have to have foot surgery. My doctor is young no way as aware of Lyme as yours, but he has agreed to work with the Lyme stuff a little ( no steroids) but I'm worried too. I hope I can handle the pain, but then I think could it be worse than I have now, maybe but I can only put it off so long.
I know a woman who has just finished her last joint replacement. She has artificial knees, ankles, wrists and hips. She says her lyme doesn't bother her anymore. (bugs don't like titanium I guess)
Posts: 199 | From utah | Registered: Jan 2009
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bettyg
Unregistered
posted
daphne, WOW!!! what a response from his ortho surgeon!! i am impressed.
..kayak has had double knee surgery; so had missing stymielymie.
but i don't know of anyone off hand w/brain stem thing you mentioned.
i had my left hip replaced 2 yrs. ago; surgery went well. surgeon did clip my bone and informed me later my bones are 20 yrs. OLDER than i am!!
also, i developed a blood clot that THEY did not catch but i told them about something right before they dismissed me. i'd better not tell you what they did without anesthesia; i don't want to frighten you.
but if/when you have your surgeries, pay attention to your body anything super hot/red! my ice packs i was using were thawing quickly. no one checked or mentioned about a blood clot.
willis, good luck on foot surgery.
i'm going to post this also on ELECTIVE SURGERY TIPS which helped my surgery go better since i presented it to both my surgeon and anesthesiologist!
Guidance for Fibromyalgia Patients Who Are Having Elective Surgery
by The Oregon Fibromyalgia Team ImmuneSupport.com
07-09-2007
We highlight the following guidelines from time to time for the benefit of patients facing surgery.
If you are having a major surgical procedure there are some issues that you may wish to discuss with your surgeon and anesthesiologist that could reduce the ``fibro-flare'' that often occurs after surgery in Fibromyalgia patients.
1. Request that you wear a soft neck collar and minimize neck hyperextension (if an endotracheal tube is anticipated).
2. Request that your arm with the intravenous line be kept near your body, not away from your body or over your head.
3. Request that you be given a pre-operative opioid pain medication - about 90 minutes prior to surgery. Opioids are morphine or morphine related drugs.
The rationale for the pre-operative use of opioids is to minimize ``central sensitization'' - as this inevitably worsens the widespread body pain that you are already experiencing.
4. Ask to have a long-acting local anesthetic infiltrated into your incision - even though you will be asleep during the procedure. The rationale for this is to minimize pain impulses reaching the spinal cord and brain, which in turn drive central sensitization.
5. As a Fibromyalgia patient you will need more, a usually longer duration, of post-operative pain medication. In most cases opioids should be regularly administered or self administered with a PCA pump (patient controlled analgesia).
6. Most Fibromyalgia patients require a longer duration of post-operative convalescence, including physical therapy in many cases.
Many patients have reported owing Dr. Robert Bennett's recommendations in this article made a big difference in their post-surgical pain and recovery time. They advise printing several copies of the article and giving it to all doctors, surgeons, and anesthesiologists involved.
And don't just assume they've read it. *************************************
Make sure they explain to you in detail what steps they're going to take to reduce the intensity of any post-surgical flare-up.
Also talk with your doctors about your immune system concerns to see if there are additional preventative measures you can take.
Even under the best of circumstances, people with FM and ME/CFS generally have a longer post-operative convalescence period than most.
So allow yourself plenty of extra time to recuperate and don't push yourself too soon. We wish you the best in your upcoming surgery.]
___ This article is reproduced with permission from the Oregon Health & Science Fibromyalgia Research and Treatment Team, headed by Robert Bennett, MD. For information on the team's frequently scheduled speaking engagements in the states of Washington and Oregon and elsewhere, go to their Web site at www.myalgia.com
major surgery Posted by: crumpton Dec 20, 2006
I had a hysterectomy on Oct 25th by an abdominal incision. The only thing that I would add is that if you are seeing a pain management doctor is to have the pain management doctor to dicuss the post op pain issues with the surgeon.
AFter I came to, I was in terrible pain. The pain meds that were given to me didn't address the pain because of the high doses of pain meds that I was taking for the fibro before surgery.
I was on methadone 5mg 4 times a day and because of this, the morphine pump that was intalled did not touch my pain. The gyn finally fixed my pain doses but only after having 12 hours of intense pain. I believe that this could have been taken care of if the two doctors had spoken to each other.
FM and Surgery Posted by: segrin Dec 20, 2006 5 0 Total Score: 5
I also had surgery in July of '06 and I brought the FM and Surgery article to my appts with both the Dr and anesthesiologist who Both ignored the literature and my attempt at explaining the pain tolerance issues, and how I'd need more/stronge for surgery.
It was very disheartening in this day and age to be ignored with this issue. I was treated like I was a junkie looking for more drugs. Needless to say I had a much longer healing time, the whole ordeal threw me into a huge flareup and had to go to my Rheumatologist for a different pain med. Some how General Sergeons and anesthesiologists need to be better educated and informed about FM.
Surgery (hysterectomy) June 2006 Posted by: cmarie3 Jul 12, 2007 Was this review helpful? 3 0 Total Score: 3
For over a year I have had severe new and different pain and aggravated ME/FM/CFS symptoms. I had to cut down my hours at work and actually had to let one company go.
I have had to take hydrocodone now or I am in tears due to the ongoning pain if I don't. I try to take only 1-2 a day and when I do work that increases to 3 or 4. The DR's have bounced me around, dropped me as a patient, not returned my calls and many have been rude.
I don't understand why I have not healed and have this ongoing pain still from the surgery. Any advice would be appreciated, I feel so alone in this. Thank you, Cindee Reply
SURGERY Posted by: cfidsmedia Jul 11, 2007 Was this review helpful? 3 1 Total Score: 2
THANK YOU SO MUCH FOR THE ADVISE ON SURGERY. I HAVE ONE COMING UP AND WILL GIVE THIS INFO TO MY DR. KINDEST REGARDS THEA SCHLOSSER
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Daphne,
I have had every joint on my left side worked on and two left ankle repairs one being a reconstruction.
I did not know that it was lyme destroying my joints when I had these surgeries in the mid-late 1990's. I just knew that I was young and there was no good explanation for the deterioration.
I am now possessing the knowledge that it was the Lyme that tore me up.......
But! here is the good news, with each surgery I recovered quickly and had LOADS less pain after the joints and ligaments were repaired.
I went on to continue competing in running races and all types of physical activity after the surgeries.
Since my first round of IV rocephin, I have had almost total resolution of joint symptoms......only wish that I could find the magic bullet for my brain!
Anyways, my experience was all good. I had an epidural for my second ankle reconstruct and did much better with this than the standard knockout.
Good Luck, and hope that you have awesome results.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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well, while i have been off from here, my llmd, called my ortho surgeon.
he gave him a TON of info. about how my case will be very different from his others. with all the issues from the arnold chiari, not to mention the lyme and fybro.
i kind of fealt like i was already being a pain in his rear end, and he has not even done the surgery yet.
but at the same time am very greatful, they both actually truly care so much.
i am going to try to put it off until the end of summer, as my husband now has to have repeat knee surgery from his accident 21 months ago.
so it looks like he is going to be having his the beginning of june, and i am shooting for august.
this way we will still be able to help each other.
hope everyone has a great weekend! anyway,
-------------------- (((HUGS!!!))),daphne Posts: 232 | From ft. worth, texas, | Registered: Apr 2002
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Sis used a passive exercise device which speeded up the healing. CPM machine.
See a video of it here (how it works) It will put your mind at ease:
posted
betty, i ac5tually always meet my in and out of network decudtible by march, from all the homehealth care, and tests, etc..
i do not know how long i will wait after my left one is done until i do the right one. i am so worried about how i am going to do after the surgery.
i mean i cannot even sleep in a bed, it has been years for that.
i cannot sit or lie for more than 10 minutes at a time without every joint and muscle going crazy.
so how in the world will i rest after knee surgery.
oh well, god will figure this one out for me i hope.
thanks all for the responses.
-------------------- (((HUGS!!!))),daphne Posts: 232 | From ft. worth, texas, | Registered: Apr 2002
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bettyg
Unregistered
posted
daphne,
BEFORE your surgery, tell them you want them to put you in your hospital RECLINER vs. the bed!!
i didn't & when they put me in it; my tailbone hurt like hell & i yelled out in so much pain! later when they got me up, i spent the rest of my 5-6 days in recliner fulltime and going to the twice daily exercises we did as a group.
i believe kayak and stymie lymie did theirs within 4-6 weeks of the other. i hope kayak will stop by and share her experiences with you.
i wished i would have thought of that prior and saved me more pain than i had to have... good luck!
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