NeuroTalk Support Groups - Full recovery from RSD/ CRPS

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Full recovery from RSD/ CRPS (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/9135-recovery-rsd-crps.html)

Quote:

Originally Posted by betsykk (Post 767340)

I am the unhappy customer of Dr Rhodes. You can do a search of my name and find out some of the story. Charming Dr Rhodes has had his attorny send me a cease and desist letter for telling my side of the story about our less than glowing experience there. I do know that legally I am entitled to tell you my OPINION.
Also, Dr Rhodes REFUSES to release my daughter's records. I am filing a complaint with the state of Texas as I know that is definitely against the law. For the record, I have TRIED to call, email or mail him my complaints to work this out. He refuses to talk to me, my husband or daughter.

Wow, that is truly unbelievable.

I don't know about Dr. Rhodes but have heard such different opinions of this man. I walked in the RSD Walk last year in Central Park, NYC and there was a whole team of people with Dr. Rhodes shirts on and telling his story to anyone who would listen.

Just the fact that he paid an attorney to write you a letter, or it's a friend, speaks volumns.

Hope you get yours daughters records.

Just a quick story I know of a doctor in NJ who lost his license to practice medicine for many things but one was not providing records to patients. Then he ran to NY and practiced there for about 3 years and lost his license there not he's in northeast PA, I believe E. Strausburg. Writing to the Texas Board will shake him up. Medical Boards appearently take that type of behavior very serious. Good Luck.

Gabbycakes

Eventually I will write about my experience. I find it absurd that not only will they not give us our records, they will not give us a copy of the 'signed' policy saying we knew about the 30 day return policy (which we were never told about). They were months late in filing insurance claims and the independent biller was disgusted with them. And now they hang up on me saying they are not allowed to talk to me. Very unprofessional.

can you help me? husband has rsd but sounds like trapped nerve..can you tell me who y

my husband sounds like he has a trapped nerve as well.. can you please let me know who fixed this for you **

Quote:

Originally Posted by lisashea (Post 51149)

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

Spontaneous Remission

I came down with RSD in June 1996 after surgery on my right thigh, and suffered the tortures we're all familiar with. In January 2010, I suddenly started losing my symptoms. It was rapid at first, but then slowed as the remission continued. Now I'm in about 90% remission; the only remaining symptom is that I get fatigued really easily.
My PMD was amazed! She said, smiling, "With your years of chronicity and your age, you have no right to be in remission!" She and I have been micro-analyzing what I was doing, taking, eating, etc., but still don't have a clue why this happened.
My RSD was centered in my right foot - actually in the tarsal joints - and I went through the usual series of epidural blocks, had an SCS installed (didn't help much), took lots of Neurontin, narcotics, muscle relaxants, etc. I never experienced any spreading, for which I'm way grateful. I really wish I could nail down what caused this, but no luck so far.
One factor, which my pain docs and I had a lot to do with the lack of spreading and maybe even the remission, is that I was a pretty successful runner/racer when the RSD hit. Since long distance runners developed very large veins in our legs and feet, it seems logical to infer that I didn't have as much vasoconstriction as most RSD folks do.
Since the remission, I've become a major advocate for RSD and chronic pain patients. I'm a Professor of Medicinal Chemistry, so I started researching RSD as soon as I knew I had it. *edit*
I'd be glad to answer any questions, except "How'd you do it"! I still don't know.
Howard

Quote:

Originally Posted by cfthb (Post 882861)

There's an old joke; doctor, doctor, it hurts when I do this. Doctor: Don't do that. This has been my approach from the beginning. I'm trying to discover all the things that hurt and not do them. I had about a 40% remission at one point but was reinjured on the job and it was twice as bad as where I started.

I was always quite athletic. One doctor was surprised at the size of the veins that feed the heart and an anesthesiologist almost jumped out of her shoes when my pulse got down in the 25 range and B/P not much higher. The doc asked me if I was an athlete and it was very difficult to answer; "used to be".

Did you pay attention to things like diet and exercise? Did you go through a lot of depression coming to accept the condition? Did you ever obsess on the condition or getting better?

My RSD is back, but I was in remission for eight years, so I can tell you what I did to get there.

I was diagnosed with RSD in my left foot in 2003 when I was 22. I went hiking the week before my college graduation. The pain started in my big toe, but quickly progressed to all my toes and then my entire foot. The docs did multiple xrays which showed nothing. I had multiple blood tests for lyme, lupus, rheumatoid arthritis, HIV and gout--all of which were clear. My foot was about 3 times the normal size, and incredibly painful. I couldn't walk without crutches. It was clear something was wrong, but nobody could figure out what. Finally they tried a bone scan. My entire foot lit up like a Christmas tree.

I was sent to a rheumatologist and looking at the results of all my tests, his exam, and my bone scan he diagnosed me with RSD. I had all the classic symptoms: swelling, pain, hypersensitivity, temperature changes (which I couldn't tell) and some pinkish discoloration.

Now my story gets a little complicated. Originally the theory was that I got RSD from a stress fracture during my hike. However, six months after being diagnosed with RSD, I was diagnosed with Psoriatic Arthritis, which is an autoimmune inflammatory arthritis similar to rheumatoid arthritis, but undetectable on a blood test (you can test for a genetic factor, which I have, but that's not a guarantee you have it). My rheumatologist thinks I had PsA for years before my official diagnosis. Now the theory is that my undiagnosed, thus untreated and uncontrolled psoriatic arthritis caused the RSD. Rheumatoid Arthritis can also caused RSD.

I had RSD for about a year and 3 months before it went into remission. It was one of the worst years of my life. Because I had so much swelling in my left foot, I was immediately put on a large blast of prednisone, about 60 mgs for a month. It was slowly tapered over a 6 month period. I also took neurontin. They tried other similar medications. I went to physical therapy 3 times a week. I didn't notice that the neurontin made one bit of difference. The large blast of prednisone helped, but as soon as they tapered the dose to 20 mg and under, I went right back to being in pain.

Over the next year I took a variety of different NSAIDS. I delayed going to grad school by a semester. Finally in July of 2004 I had two separate sympathetic nerve blocks. The first nerve block gave me relief for about 2 weeks. The next nerve block kicked it out of me completely. Eight years later, the RSD is back in my left arm, but I got EIGHT YEARS of remission. I know I'm lucky for that, since some people never get a second.

Thanks for sharing your story. You are an inspiration to me. I hope you are doing OK with the relapse and that it soon goes into remission. Gentle breath of a hug to you!

Mara:grouphug:

QUOTE=KathrynL;883703]My RSD is back, but I was in remission for eight years, so I can tell you what I did to get there.

I was diagnosed with RSD in my left foot in 2003 when I was 22. I went hiking the week before my college graduation. The pain started in my big toe, but quickly progressed to all my toes and then my entire foot. The docs did multiple xrays which showed nothing. I had multiple blood tests for lyme, lupus, rheumatoid arthritis, HIV and gout--all of which were clear. My foot was about 3 times the normal size, and incredibly painful. I couldn't walk without crutches. It was clear something was wrong, but nobody could figure out what. Finally they tried a bone scan. My entire foot lit up like a Christmas tree.

I was sent to a rheumatologist and looking at the results of all my tests, his exam, and my bone scan he diagnosed me with RSD. I had all the classic symptoms: swelling, pain, hypersensitivity, temperature changes (which I couldn't tell) and some pinkish discoloration.

Now my story gets a little complicated. Originally the theory was that I got RSD from a stress fracture during my hike. However, six months after being diagnosed with RSD, I was diagnosed with Psoriatic Arthritis, which is an autoimmune inflammatory arthritis similar to rheumatoid arthritis, but undetectable on a blood test (you can test for a genetic factor, which I have, but that's not a guarantee you have it). My rheumatologist thinks I had PsA for years before my official diagnosis. Now the theory is that my undiagnosed, thus untreated and uncontrolled psoriatic arthritis caused the RSD. Rheumatoid Arthritis can also caused RSD.

I had RSD for about a year and 3 months before it went into remission. It was one of the worst years of my life. Because I had so much swelling in my left foot, I was immediately put on a large blast of prednisone, about 60 mgs for a month. It was slowly tapered over a 6 month period. I also took neurontin. They tried other similar medications. I went to physical therapy 3 times a week. I didn't notice that the neurontin made one bit of difference. The large blast of prednisone helped, but as soon as they tapered the dose to 20 mg and under, I went right back to being in pain.

Over the next year I took a variety of different NSAIDS. I delayed going to grad school by a semester. Finally in July of 2004 I had two separate sympathetic nerve blocks. The first nerve block gave me relief for about 2 weeks. The next nerve block kicked it out of me completely. Eight years later, the RSD is back in my left arm, but I got EIGHT YEARS of remission. I know I'm lucky for that, since some people never get a second.[/QUOTE]

Crps is going away!

I initially had a fracture that was wrapped too tight from a fracture. The tight wrap caused serious nerve trama that is expected to fully heal in2 months. The, I developed unbearable foot pain - intense burning, aching , inflamed feeling. I could not walk or drive. Mt dr. Diagnosed me with chronic regional pain syndrome. I was in beginning stages, so prognosis was good. I just had my second lumbar sympathetic block and hopeful this will cure me. the initial sot showed 70 %. improvement in my overall foot. Took down swellin, burning flareups were gone. I am hopefully I will beat this thing completely. I am doing upper body cardio 4x week and water therapy every day for 30 min. Taking gagapentin and motrin too. I have been terrified through all this, but have found was to calm myself, which has helped as well.

Just in response:

QUOTE=InHisHands;51136]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.

I guess I just wanted to add to these statements: I was in my mid 30's when I was hit with this disease after surgery. It was so hard and fast that I woke up from surgery with some symptoms and all symptoms were out with in 2 weeks and there was no other diagnosis from any doctor other then RSD. Since I had no idea what the heck it was I listened to the doctors and did and went everywhere to get it in remission. To my dismay, it has stayed in play and has spread continually throughout the years. The one thing I have learned is that nobody can be grouped in a basket with this thing and the researchers have to get more money for their job because just treating the symptoms doesn't fix it. The other idea is that the very doctors that you have to go to should at least know what the heck they are talking abt.
Thanks for listening,
cuffs558

nerve entrapment

where is the ulnar nerve..im newly diagnosed..4 and half months progression.. and looking for any ideas on getting control of this before it worsens..pleeeeeeeease...i ask about the nerve because even when i get the movement back in the ankle/foot argh..under the foot,little toe side,about quarter way up theres a point of argh..that doesnt got away even with the tramadol ,could it be trapped nerve..what nerve,muscle,tendon, whatever is in this area..that could be damage..any info would be sooooo great.x:hug: