Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 03-18-2009, 03:11 PM #1
wyldrose wyldrose is offline
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Default hhhmmm, what kind of doc would likely listen to nerve entrapment theory????

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Originally Posted by lisashea View Post
I have completely recovered from RSD but I guess the question really is, " did I really have RSD or not?" Let me tell you my story and you can comment on what you think about it.

In 2001 I stood up from my chair at work and my left ankle just collapsed under me. This had happened many times in my life since an initial ankle sprain when I was 14. This time the sprain didn't seem that bad- not much bruising, not a huge amount of swelling. I just figured it would get better like my sprained ankles always did.

This time was different. The pain started to spread up the side of my leg. 1st to half-way up to the knee then further up my leg. Within 6 weeks I was diagnosed with RSD and referred to pain management.

I went for 2nd, 3rd, 4th, 5th opinions while getting lumbar blocks and doing everything a "newly diagnosed" rsd patient was supposed to do. All other doctors agreed with the RSD diagnosis. Clear cut case with all the symptoms except never swelling.

4 yrs passes and I keep trying everything I can. HBOT, accupuncture, week long epidurals, ketamine, more drugs than I care to remember, herbology, cranial sacral, applied kineisiology, I can go on and on with what I tried.

I am also being seen by 1 of the big-wig RSD doctors, Dr. Daniel Carr. I have shrunk from 125 to 101lbs and look like hell. The pain has spread up my entire left side including my face, eyelid, nose and ear, left arm and right foot and leg. I am suicidal at times and find great support from my family of RSD friends who post on a forum just like this one.

Then my doctor informs me that he will no longer be seeing patients and is off to teach the world about RSD. I must then find a new doctor. No small task after seeing so many previously over the past yrs.

I go to a new doctor who is recommended by my chiropractor. He believes that my diagnosis of RSD is not right. Doesn't know what it is but says that this doctor friend of his is like a medical detective. So, I go see her.

She tells me that she has had 8 patients in her medical career who were diagnosed with RSD but who had nerve entrapments in their ankles all due to ankle sprains. She thinks I am her 9th patient. This theory is not news to me because I had been telling doctors for years that I had 2 trapped nerves and could name them!

I had trapped my ulnar nerve in my elbow 20 yrs earlier and my pain felt EXACTLY the same just in my ankle not my elbow! I had 4 operations to fix that problem but back then doctors would do "exploratory surgery" where now malpractice is a much bigger deal.

Anyways, her plan was to do nerve blocks on these particular nerves. The EMG I had didn't test these particular nerves so it was negative. She needed to proove to surgeons that these nerves were trapped and needed to be surgically freed.

While I awaited my next appointment, which wasn't for another month, I went to my chiropractor in tears because her exam of my foot made the pain so much worse. I was back on crutches and could not bear any weight at all. Once I told him that the theory was entrapped nerves he said that he could "traction" my foot(move and spread all the bones) and move the tallus bone on top of the foot and few other things. He did not know if this would help of not but it was worth a try. He works for the NE Patriots football team and does this adjustment to the players on the field when their feet get mangled.

Within 10 days of his 10 minutes of work on my foot, ALL of the RSD symptoms disappeared. I awoke on day 11 with that "feeling" gone.

It has taken 2 full years of rehab and intense pt to gain back all the muscle lost to atrophy but I finally have been discharged from medical care and began working again fulltime just 2 weeks ago. I no longer have any pain anywhere in my body. It was a long, frustrating hard road but I made it.

My medical records state that "It is a miracle" but I'm not sure I beleive that. The medical explaination of my rsd symptoms was that because the nerves were trapped, my nervous system became hyperactive which causes the host of rsd symptoms. In a sense, I had a "curable" type 2 RSD. They had thought that I had nerve damage when I really had nerve entrapment that could be fixed. I knew it all along but no one would listen to a mere mortal without an MD!

So that is my story of recovery. I have been put in contact with another woman in Canada who recently had surgery to un-entrap 4-5 nerves in her foot and she too has awoken with the rsd-type pain gone. She's got a long road ahead of her but when she woke up she said the pain was totally different. That is how I felt after my surgeries on my ulnar nerve over 20 yrs ago. There is also many case studies on rsd and nerve entrapments now in 2006 but in 2001-2004 there was nothing out there published.

Questions that I still have:

- did I have RSD or not?
- was it really the chiropractic adjustment or was it a combination of all the therapies I tried?
- did my use of ketamine play any part?
- would my RSD have resolved itself if my chiropractor didn't make those adjustments?
- why didn't all of Boston's Best Doctors figure this out sooner?

That's it in a nutshell. Unfortunately, the forum that I used to post to(braintalk) crashed and does not have all of the hundreds of posts available for you to search thru and read. I was very active and posted alot about all of my experiences with the different alternatives that I tried.

I would be more than happy to answer any of your questions or help you in any way.

I am hoping that if just 1 person recovers because of my story then maybe, just maybe the suffering I endured for so long will be worth it in some strange karmic sort of way.

Peace and HOPE to you. Never give up trying to find YOUR cure.
Lisa

i have never used this forum, so i hope this part shows up........i don't think i have this either.....i had a terrible injury with compartment syndrome as a complication, but i can't believe i now have RSD/CRPS of any kind.....does anyone have an idea for type of doc who would listen?????
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Old 03-18-2009, 06:17 PM #2
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Hi wyldrose,
I copied this over to a new thread for you so more will see it and say hello.
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Old 03-18-2009, 08:11 PM #3
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Default Hi Wyldrose,

For nerve entrapment you would most likely see a Neurologist for an EMG or also an Orthopedic Surgeon who might order an EMG.

I will say though, I have had 3 and none of them showed anything but like you the Drs. found the answers.

It sounds to me like the treatment you got might have put the RSD in remission. Also you could have Fibro along with RSD that could explain some of the all over pain.

I spent almost 4 years in PT, had blocks, had triggerpoint injections, and much more. I think with RSD it take a lot of time to get it in remission and a lot of treatments.

I became suicidal from the shape I was in also. It took a lot of support to keep me going and I was blessed like you, to get it. I also spent many hours in councelling and still go to help keep me going at times.

I am pretty much in remission. Weather changes gets things going again for me and overdoing things.

I also had ulner nerve surgery after RSD, and many more surgeries. Blocks kept the RSD from spreading. Sometimes we just can't get around having surgeries even though we have RSD.

Your story is a lot like mine. There are many times I lay in bed and think about how far I have come in the past 10 years. It's like a miracle to us.

I'm glad you are where you are today and hope you continue to stay that way.

Ada
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Old 03-18-2009, 08:29 PM #4
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Quote:
Originally Posted by wyldrose View Post
i have never used this forum, so i hope this part shows up........i don't think i have this either.....i had a terrible injury with compartment syndrome as a complication, but i can't believe i now have RSD/CRPS of any kind.....does anyone have an idea for type of doc who would listen?????
Hi Wyldrose,

Sorry that you may have been DX with RSD. Wish I could do more for you. here is a little of my experience.

I developed RSD after a serious injury/infection to myhand.Hand/arm/shoulder involved. I had a very good ortho guy who diagnosed me. I went 16 months doing numerous treatments OT/PT, medications,nmes metal mesh glove, Tens, SGBs multiple, RF lesioning, acupuncture, hypnosis.....the list goes on & on. My PM dr.( he should be cloned to help people everywhere) kept believing I had an entrapment or compression or something and referred me to two diferent ortho guys and they kept sendingme back to PM because they didn't think anymore than RSD. Finally referred to an Ortho guy that was not afraid of exploring (very carefully, that is another whole story.) When I woke up from surgery I felt like a brick was lifted. i just knew something was very diferent. I am 3.5 months post surgery and not perfect but better than I could ever have imagined. Left with movement disorder being treated soon with botox inj...I will see how that goes. I had the movement disorder with RSD before sugery. also weakness in my hand but hopeful that it will have a chance to gain strength once I have less of the spasms.

When did they DX you? Are you seeing a PM Dr.? Listen to your gut if you think its something else get the referrals that you need to put your mind at ease. A dr. that is a good advocate for you.

Take care and hope you are feeling ok
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