RSD Above-Knee Amputation Questions! TREATMENT HELP PLEASE!
 

Okay, so ive had my RSD for about two years now, i have it in the side if my right knee and sometimes in my shin. i got it from sports and an accident, im actally not sure what exactly caused it. Anyway, i desire more than anything to be able to walk normally again, ATLEAST. Fortunately enough, my Rsd hasnt spread to anywhere else in my body.
ive done most everything to try and fix it. ive had several lumbar Nerve blocks, ive tried physical therapy, ive tried a tenz unit (still use it on those occasional days with random nerve spasms) Several Seizure Medications, waiting (maybe not long enough). Anyway, ive tried everything short of a Ketamin infusion and Amputation. I was just wondering if anyone here had either heard stories of Amputations or had actually had one done? Or if people had any advice as far as treatment goes? :confused:
As a side note, i am slightly concerned about cost but only because im a minor and im unsure what my parents insurance will cover. Id like to know what im dealing with first hand before i go to them for fear that theyll reject it. While i may be concerned with price of amputation and prosthetics, the price of walking and atleast being able to function semi-normally is priceless to me... Thank you for any help you provide

It's truly hard to advise a young adult on such a question but I will try. Amputation I believe does not even come on the radar when it comes to RSD. I have never heard of anyone having a amputation because of pain from RSD. I am assuming you have a pain doctor who you work with you state you have had many blocks etc. I have also had so many blocks and have done 3 - 5 day in-patient ketamine infusions and believe me they are not the end all. But that is a far better chose then amputation please don't think that. As far as insurance for amputation I have no experience sorry, but ketamine is tricky. My insurance did cover most of the procedure, hospital stay and I was in ICU. I did have to come up with a good amount for the actually ketamine itself and the monitoring of my doctor, each time I had to pay $3500 upfront. I was very lucky they covered it like they did. I did my treatments in 2005-2009. I have heard the complete opposite where insurance won't cover in-patient at all. I think it demends on the insurance company itself they all have there own rules when it comes to Ketamine Procedures, some will cover in-patient, some will only cover out-patient and won't cover anything.

You should really discuss this with your parents first and then have a discussion with your doctor. Hope all goes well and post anytime for advise.

And now I am going to put my Mom Hat on "get that crazy idea of amputation out of your head"...RSD really sucks I've been at it for 7 years your definitly not alone. Try and keep positive. When I started I thought how could this happen and felt like you do but after all these years I actually went back to work, only PT, but it's a great feeling. I still can't do what I did before the accident but when we went on vacation this year I got brave and went to a water park and went on all the rides except for one and I'm 47. So there is light at the end of a very long tunnel. My son was an athlete all his young life until he graduated High School he played Ice Hockey from 2nd grade. What sport did you play?

Oh,one other think. I met a group of people at the RSD Walk in Central Park, NYC in June of this year and they spoke of a doctor from Texas his name is Dr. Rhodes. I think you said you are from Texas? You can find him on the internet just goodle his name. I forgot what kind of procedure he is pushing but this group just could not say enough good things about this doctor. I forget the procedure I apologize. But look it up you never know..

Keep us posted.

Gabbycakes

Hi,
 

I wouldn't think that there would be a Dr. that would go along with amputation nowadays. It's not the answer. I have two friends that lost their right arm around the same time and they both deal with phantom pain. Troy says it's just as if he still has that right arm. He has RSD from losing it and he said at times he even reached over to move his arm even though it isn't there.

I would try the lidocaine infusions or the ketamine. Also if you can find the right meds to help with the pain. You never said wheather you were on narcotics, depression meds, muscle relaxers, etc.

I have Methadone for pain along with Lidocaine patches. Others are on other meds such as Moraphine, Oxycontin, etc.

Others will come on here and tell you some of what they take for the pain. You might get an ideal of what to ask your Dr. for.

I have had PT, triggerpoint injections, years of PT, tried every pain med, and what I find is nothing gets rid of all of the pain. It's like a fire that has to burn itself down, that won't go out.

Desperation makes us do things we regret later. I ask my Dr. many times to cut my right arm off. We finally got it under some control.

If you stay on here you will hear a lot of ideals that you can take to your Dr. and see if he will try some of them. It's a trial and error with RSD.

Good luck,
Ada

Thank you! i know that Amputation isnt nessecarily the ideal treatment option but id love more than anything to get back to where i was... I was a kickboxer and a wrestler, which caused my injury :P I still do push-ups, Situps and when im having a light day i put on the tenz unit and jump rope (AGONIZING but worth it). Anywho, i appreciate the advice and ill take it to heart, and since i AM infact from Texas ill look into Dr. Rhodes and "investigate" his treatment :D

Same thing with me, the pain medication never took the pain away, it just chipped the edge. So the only time i use it is when i have like a concert or something. i tried the muscle relaxers and they didnt seem to do all that much... but ill deffinetly check the site regularly and see if any good suggestions come up... Thanks!!

I was thinking also.. what if the amputation just triggered more of the RSD or caused it to spread? :eek:

I think that is why it is not considered, I know many have mentioned they wished the affected RSD body part was gone, but I have not read of anyone trying it at all.

Sorry to hear that you are pushed to this state with this disease. I can totally identify. I personally requested that my left leg be amputated above the knee as my RSD is from above the knee and down to the ankle. I requested this of both a neurosurgeon and a pain specialist. Both told me that an amputation will not work to relieve the pain as the diseased nerve areas are actually tracked far above the area that it innervates (thus the attempt at sympathetic blocks in your back used for your leg.) This is why they reserve a sympathectomy as a last resort option, which is essentially removing the entire nerve segment much further up. I am told that the likely outcome of an amputation in RSD would be "phantom pain" resembling the exact symptoms that you have with RSD even though the leg isn't physically present. Amputees frequently experience leg pain after amputation due to the fact that the nerves don't recognize that the leg is no longer physically present (and something that you may want to research to understand further.)
I was driven by the pain to attempt to "stage" an accident which would force an amputation (at a young age, even a severe trauma would cause surgeons to do everything they could to salvage a limb) due to severity. But when they said that it wouldn't even work if I could find someone willing to do it, I knew I just had to keep looking for other options.
This is what my docs explained to me-hope this helps.
Lori Lee

Jo -

Check this one out:

Amputation for reflex sympathetic dystrophy, Dielissen PW, Claassen AT, Veldman PH, Goris RJ, J Bone Joint Surg Br. 1995 Mar; 77(2): 270-3, FREE FULL TEXT @ http://web.jbjs.org.uk/cgi/reprint/77-B/2/270.pdf

Department of Surgery, University Hospital, Nijmegen, The Netherlands.

Comment in:

J Bone Joint Surg Br. 1995 Sep;77(5):836.

Abstract
We have reviewed 28 patients with reflex sympathetic dystrophy (RSD) who had 34 amputations in 31 limbs. The amputations had been performed for untenable pain (5), recurrent infection (14) or to improve residual function (15). Only two patients were relieved of pain by amputation, and this could not be predicted. Ten of 14 patients were cured of infection and 9 of 15 patients had improvement of residual function. In 28 of the amputations, RSD recurred in the stump, especially after amputation at a level which was not free from symptoms. Because of recurrence of RSD in the stump or severe hyperpathia only two patients wear a prosthesis. Despite this 24 patients were satisfied with the results.

PMID: 7706345 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/7706345

Please look at out the one paragraph Conclusion at p. 273.

Mike

Hi Texas Athlete,
I can imagine as a young person, the devastation of the prospect of losing your health in this way. I do hope for remission for you. Younger people have a better chance of remission-don't remember where I learned that. Even though I wasn't diagnosed with RSD for 4 years, I did start physical therapy immediately after having surgery with resulting frozen shoulder. I also did massage therapy weekly before pt. I feel the massage therapy, though painful, was good for me. It warmed up my muscles to make the pt. go better.
I did go thru 3 remissions of each over a year. The remissions were wonderful. The RSD that started in left shoulder eventually moved to right shoulder. More pt and massage therapy-eventually a 2nd remission. Then while water skiing, felt pull in left hand-misdiagnosed-went to a University Town-Eugene, Or and went to the sports injury group of Drs. The hand orthopedic Dr. diagnosed me in 1 minute. Tests confirmed. Started in pt and he ordered Tens Unit. Came back to Arizona and found neurologist and Hand Ortho. both confirming RSD. Started pt and massage therapy and a BIG IMPORTANT Part of the ortho therapy was desensitization. My hand was put in warm glass jar with warm air whirrling sand around. Then both at pt and at home I had 5-6 plastic bowls filled with cotton balls, coffee grounds in another, pieces of fabric, beans, sugar, just anything of different textures. Putting your foot in each of these bowls are good for desenitizing your nerves. Because of delay of treatment my hand didn't recover completely. My fingers are curled like a claw, but they aren't sensitive anymore. I can cut my own food, peel potatoes, drive my car with both hands etc. I did have another remission of over a year, but moved to right hand, both feet, full body, called generalized RSD and now internal RSD and affecting scalp with lesions, rashes.
I belong to a local support group in Phoenix, AZ. The annual RSDSA meeting last year was here in Scottsdale. 128 attended Sat. then next day was for Drs.
Because RSD is an autonomic condition, meaning affecting our involuntary organs like regulation of our body temperature, both hot and cold. regulation of involuntary organs like heart, lungs, blood pressure and go both high and low. Too low can cause dizziness and passing out. And the third area is our immune system. An excellent website is rsdrx.com puzzles list Dr. Hooshmand practiced 40 years in Florida, mainly RSD and recently retired, but has website up. The puzzles are actually question-150 and his answers. Very Good.
RSDSA is a national organization. If you put your zip code, they will tell you closest rsd support group.
When I was diagnosed full body, my neurologist suggested seeing a psychiatrist to help deal with the life altering disorder. I found the most wonderful psychiatrist who also is a neurologist and pharmacologist. He brought me out of a big black hole. This life altering disorder is like a death-grieving over the loss of good health, the sports that you love, your dreams of a healthy life-and who knows may still be possible if you go into remission. Those that get therapy the first 6-12 months have an advantage of remission. Even a grief couselor would be good. After my parents died when I was 25, I had a wonderful couselor for 2 plus years.
I'll still seeing my psych- 6 years now. I'm so grateful to find such a gifted Dr. He put me on a 200 person trial study and I'm sleeping 10 hrs a night, and before I couldn't hardly sleep at all. I haven't been on anything stronger than vicodin. Because RSD affects the Limbic part of your brain-that affects anxiety-depression. I'm on an anti-anxiety meds called lorazepam. When I first got this I couldn't understand my anxiety and panic, as i never experienced that before. But RSD causes that. I'm on Cymbalta, an anti-depressant, which works on nerve pain. I had spasms, electric shocks jolts, thru my whole body, thru my brain, would raise my head off my pillow while sleeping. My Dr. raised my neurotin to 3200 mg. and they stopped. I did try Lyrica 400 mg. but gradually went off the anti-seizure meds and it is very seldom I have a spasm, nothing like before. This drug does cause weight gain. I'm now working out with 1 lb weights and other exercise to lose the weight and tone up again.
Since gradeschool,I was in track and field, thru middle school and high school. State medals and National. trained at U OF O Hayward Field while in High School. I still miss water skiing, snow skiing, used to play tennis 5=6 days a week. My daughter and I won a doubles tournament just before I got RSD. The US OPEN starts soon and we attended 12 days one year. I guess you could call us fanatics. One of our family trips was the Indian Wells, Ca. tennis tournament every year.
I know you have a chance at remission. Have you ever checked out HBOT -It's Hyperbaric Oxygen Chamber like the deep see divers go into. It promotes circulation. My Dr. has two clinics with HBOT in each of them.
He had another neurologist call him and asked my Dr. to treat his patient in the HBOT. She was driving on the freeway and was in an accident. A car hit the metal fence and one of the metal poles became a missle and went thru her windshield and impaled her thru the shoulder into the back of her seat. After her surgery, to help her regain range of motion, she was treated in the HBOT and after 6-7 treatments she was waving to the TV station camera crew with her arm after getting out of the HBOT.
I have full range of motion ,except my left hand, due to my Dr. My toes started curling up off the floor. He had me get in my pool (water needs to be 86 degrees) and while swimming curl my toes. In 4 months, my toes were touching the ground again. I never missed a day and am no grateful I can walk. YMCA I believe keep their pools warm, Swimming everyday is one of the best forms of therapy. Epsom Salt Bathes are good.
As a young man, it's natural to want to be like every one else and how you used to be. Please don't give up. Do as much research as you can. Please try the desenitizing-light massage.
I'm 62 and young at heart. I hope with all my heart you can find a way to go into remission. One of your new friends on NT, loretta

Hi Empty,

RSD pain was first 'discovered' and dx'd during the Civil War because of the burning nerve pain complained about by........amputees !

Like amputees with phantom limb pain, our nerves are misfiring and not reading the body's signals correctly.

Performing surgery to deliberatey cut more nerves in the hope it will fix the nervous system in someone that we already know has a screwed up nervous system seems foolhardy, at best.

You have my sympathies.......I can't imagine how much worse it is to deal with RSD as a young adult. Although at 45, I'm not quite dead yet ;), I am grateful that I got to enjoy high school and sports, college and partying, being physically active in my career of nursing, falling in love, getting married, and having kids..before my world fell apart with RSD.

It seems like fighting for Ketamine might be a good place to start.