Quote:
Originally Posted by emptydepth
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? 
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