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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)

Full recovery from RSD/ CRPS

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Unread 12-17-2006, 01:02 PM   #1
InHisHands
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Question Full recovery from RSD/ CRPS

If you have fully recovered from RSD/ CRPS, I would like to hear your story...
How bad did you have it to begin with, and what treatment (medication, PT, OT, etc) did you go through? How long did it take?

Can someone ever totally recover from RSD/ CRPS?

Thanks.
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Unread 12-18-2006, 12:26 AM   #2
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A quick response til I can come back and tell you more. I've had it 15-1/2 years; diagnosed by 5 doctors in FL and NY. Been thru all the stages (hell) and seem to have come out the other end, with, at the moment, minimal issues. I weaned myself off the Neurontin earlier this year. My onset was the result of a massive stroke in '91. So, keep your spirits up and email me if you wish! :-)
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Unread 12-18-2006, 12:56 AM   #3
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Hi Vanessa

(Cute cat you got on the piano!) - We have had so very few people write in saying they've "got through it" that I really wasn't expecting anyone to say "yes" or even "yes-ish".

So, Sage, I'm certain we'd all love to know more about your experience. I'm particularly interested in when you first realized it was seriously lessening. Could you share this with us, do you think? Just love to hear more....
all the best

Last edited by artist; 12-18-2006 at 12:59 AM. Reason: spellig...
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Unread 12-18-2006, 08:13 AM   #4
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Yes please Sage - can u tell us your whole experience!! Was it full body etc??!

Thanks
Debbie
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Unread 12-18-2006, 08:47 PM   #5
InHisHands
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The best study about the outcome of RSD and the advanced stages of RSD has been written by Dr. Poplawski from Canada which was published in 1983. He showed that RSD diagnosed in the first 2 years has a chance of successful treatment in 80% of the patients and after two years each year drops the percentage of the success significantly. From Dr Hooshmand's RSD puzzles (puzzle #057~ "The Stages and Outcome of RSD")...

It seems to me that if you are a) young or b) diagnosed early along you will usually recover.

I am young, so I am hopeful that I will recover from RSD. I was just looking for other people's sucess stories, so they could tell me what they did to recover.

RSD puzzle#022-
Possible Timelines Of RSD Recovery


"Will RSD always be with you even if you recover from an original injury?

If RSD is treated early and properly, it will not hang around forever. It will definitely improve and in better than 80% of the cases when treated in the first 6 months it completely cleared up. After two years the percentage of success drops precipitously. The main exception is among children and teenagers. In this group there is such a strong recovery power that the prognosis is usually excellent and it is hard to mess them up with improper treatment with these patients the sympathetic dysfunction after successful treatment becomes asymptomatic. On can always pick the abnormalities up on thermography or in occasional cases on bone scan tests in a patient who is otherwise asymptomatic, but these tests show sympathetic dysfunction. The sympathetic dysfunction alone is not the same as RSD (Please see RSD Puzzle #1 "What is RSD").


H.Hooshmand, M.D.


Be sure to check out the whole puzzle list: http://www.rsdrx.com/rsdpuz4.0/001.htm
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Unread 12-18-2006, 08:49 PM   #6
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Quote:
Originally Posted by *Sage* View Post
A quick response til I can come back and tell you more. I've had it 15-1/2 years; diagnosed by 5 doctors in FL and NY. Been thru all the stages (hell) and seem to have come out the other end, with, at the moment, minimal issues. I weaned myself off the Neurontin earlier this year. My onset was the result of a massive stroke in '91. So, keep your spirits up and email me if you wish! :-)
I'd LOVE to hear your story! Thank you.
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Unread 12-18-2006, 09:36 PM   #7
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Default Have I got a story for you!

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
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Unread 12-18-2006, 10:25 PM   #8
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Default Right on Lisa!

That is awesome!
It is really good to hear from you! That is some awesome news, I do remember what you went through, people need to hear your story.

Your right about all that lost information cause it would help alot of people. Im soooo glad your still with us to let people know that sometimes we can be fixed! Dont stop fighting or looking for reasons why we have that pain.

Thank you for still hangin with us

Big ole Hug!
Allen
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Unread 12-18-2006, 11:39 PM   #9
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Sage, that is good news to hear that you are doing so well now after such a long time since your rsd began...

I know I would love to hear your story whatever it may be.
It's always good to hear that someone is better and maybe even somewhere down the line some studies will be done on the 'route" the rsd took, then receded down. Maybe a clue to the puzzle of an answer to rsd rests somewhere in the journey you and other who are better have had.

I began browsing after googling stroke and rsd and came across a number of sites. Maybe the others here have seen this one I don't know. And if it has been already posted I don't know. But the site is:

www.nyc.painmedicine.com/RSD_syndromes.htm

I wandered through the site and post it if only because there was a section on infusion therapy (ie. ketamine Iv for one though not the coma) and since it was mentioned somewhere on the board regarding is it a success?, i noted this site says in essence the coma one, if good, is good until a new injury happens to set rsd off again.... there were some other interesting sections as well regarding various chronic pain syndromes.

Wishing you continued wellness....
all the best,
Ina
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Unread 12-20-2006, 11:16 AM   #10
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To Sage,
I do not mean to be rude here, but I feel you could take a minute to share what helped you with this RSD hell.

I personally have had it 5 years. Any hope is really appreciated. Hugs, Roz

To Lisa,
I am so happy for you. I hope your day is full of love and joy. Hugs, Roz
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