NeuroTalk Support Groups - Full recovery from RSD/ CRPS

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

Thanks I needed that !

Quote:

Originally Posted by lisashea (Post 51782)

I am a very lucky person to be where I am today.

Believe it or not, while speaking with my dad earlier today, I told him that I was glad that I lived the past 5 yrs in rsd-hell because now I feel like I truly can appreciate and value all the things in life that are really important. Before RSD I didn't really get life. I don't know if that makes sense or not but somehow I feel like a wiser person because of the suffering I endured. I will never forget what it is like to start and end each and every day in the worst agony imaginable. So that every moment that I now don't have that pain is an incredibly wonderful moment in time to be treasured.

If wishes could come true - all of you would awake tomorrow and never feel that pain, never, ever again.

Peace and hope,
Lisa

I was afraid there was no hope ,Thank 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

Hi Lisa,
I have just started the road to recovery. I had surgery 12/19/08 for tarsel tunnel release on my right foot. I was told by the surgeon that there was entrapped nerves also that he fixed. After the surgery I was in severe pain on the 3rd day and my son took me to the Doctors office. They removed the wrap and half cast only to find that it was wrapped too tight and the top of my foot was purple. I don't know if it was the surgery or the wrap that did this. I am thinking of going to a chiropractor after reading your story. I have had 4 nerve blocks so far with no relief. They want to put a stimulator in my back, but I am not ready to commit myself just yet to something so permanent. I am asking for any suggestions. I am 48 and very active. I have been out of work and the gym since the surgery. I am going crazy reading all the negative stuff about RSD, Please help!
Chrissy

Quote:

Originally Posted by chrissy h (Post 486561)

Hey Chrissy,

I noticed from another thread you are going to see Dr. Maleki. I saw him two years ago and he told me to stop seeing my Chiropractor. I didn't because his adjustments have been one of the best things to help my full body RSD. Dr. Schwartzman approved of my Chiropractor. He is an activator Chiropractor he doesn't use his hands for adjustment he has a small spring loaded tool that he puts on the part of my spine that needs adjusted and the tool realigns the spine. Which I have found essential to maintaining manageable pain. My DC diagnoised my RSD. All the nerves run through the spine and if the spine is aligned then the nerves work better. I don't use any narcotics on a daily basis only for break through pain and I know my Chiropractor is the reason why.

Hang in there,
Sbowling

Thank you for this thread

This is my first post. I am here because my husband has been diagnosed with CRPS 2. He ran his hand over his table saw and chewed up his radial and ulnar nerves. No bone damage, just nerves, arteries and muscle. All has been surgically repaired, part of which required a nerve graft from his leg.

Post surgery he was confined to a splint and not allowed to remove it for two weeks. Then he was sent to PT and allowed passive exercises only which he did religiously every hour, as instructed. About two weeks into the therapy he started complaining about swollen and stiff fingers that made his exercises very difficult. I told him to show the surgeon at his next appointment and my stoic, ex-marine husband said, "He knows they're swollen."

When the splint came off two weeks later, the surgeon said, "Hmmm. Your fingers are really stiff. Looks like you have CRPS. Go see our pain management doctor." Husband comes home extremely upset. All he wants is for his hand to be usable.

Long story even longer, he had a ganglion stellate block which did nothing. Five minutes in the recovery chair and he was already complaining that the pain was still there, not even minimized. This past Monday they did a brachial plexus block. Five minutes in the recovery chair and he swore he could still feel burning right at the end of one of his scars. I told him that couldn't be true since his arm was numb from his neck to his fingertips. About an hour later he insisted that there was pain although minimal. I decided a 50-year-old man ought to know when he was feeling pain. In spite of that, we had 18 hours of relative bliss, toasty warm fingers, an awesome PT session where they twisted his fingers and wrist into pretzels, and then the block wore off and we're back to the way he was before the block. His range of motion is still better than before the block, which is encouraging, but most of it went away when the block wore off. Our follow-up with the PM Dr. is this coming Monday and I'm anxious to hear what he has to say. We assume the block was a spectacular failure since the pain resumed right away and we also want to hear his thoughts on my husband still feeling the burning. Strange. I plan to ask about the possibility of compressed nerves and neuromas as well as his position on alternative treatments.

In the meantime, my sweet husband has not responded to Lortab, Percoset or gabapentin. We are struggling to remain positive but he's just sure his options are dwindling to near-zero. I keep reminding him that we are only ten weeks (since the initial accident) into this and are still extremely early stages. But he wants his results now. I think he would be much more reasonable had any of his treatments worked even a little but but so far we're batting .000.

I have no words to express how relieved I am to find this thread. Nearly everything I find on the web is negative, negative, gloom and doom. I love hearing stories of people who have beat this, especially with non traditional treatments. We haven't tried a single one of them yet so still have many options ahead. As head cheerleader of my little team, I need all the ammo I can get!

I just cannot wrap my mind around the idea of him having this pain for his whole life. I feel in my bones that his solution is out there, we just have to find it. Do I trust this feeling or am I simply in denial and everyone goes through this...?

Speaking of alternative treatments, I've found a site for a pain center in Corpus Christi, TX where they use a painless, non-invasive treatment that stimulates accupressure/accupuncture points. A Dr. Rhodes runs it. They supposedly get great results but they don't post testimonials from people who were disappointed. Has anyone out there heard of this place? Are they good or a bunch of quacks? We live in Oklahoma so the drive down would not be difficult for us. Any ideas how much they charge for these treatments? We have some money saved up and are currently debt-free but are plain, working folks like everyone else. Still, I would mortgage everything I own in order to pay, if it works.

Anyway, I just want to say again thanks for the positive posts. They have done more for my husband than any of the drugs or the nerve blocks! I understand that people out there who have dealt with this for a long time may think I'm being a whiner and if so, I apologize. I don't mean to. I don't feel whiney. It's just that this is brand new to us and right now we're pretty much just terrified.

Dear mjl1261 -

And welcome to the board! This is a place where you and your husband will find much support. And information. For instance, you ask about Dr Rhodes, we have a thread from June of this year called Dr Rhodes And STS at http://neurotalk.psychcentral.com/thread89188.html (The trick is in using the "Search" function at the top of the page, clicking on "Advanced Search" and going from there.)

You don't know it, but you are so lucky that you husband disease was diagnosed early and that he has gotten some relief from blocks. I say that advisedly, based only on anectotal observations that people who had even marginally effective blocks early on (which is when they work: say, in the first five to six months of the disease) appear to have fewer issues of "spread" at the one year mark, and from there on out.

But the real reeson I write is because in that same 5 - 6 month window that the blocks work, people appear to be more likely to go into premanent remission from so-called "low dose" ketamine infusions. If you haven't done so already, get the know the RSDSA website reall well. It's at http://www.rsds.org/index2.html and for a nice little article on ketamine written for a lay audiance, check out "Overview of Ketamine Infusion Therapy" by Philip Getson, DO which origionally ran in the RSDSA quarterly newsletter and is now on its site at http://www.rsds.org/3/treatment/ketamine.html

One, of many, threads we've had on ketamine ran this last June, under the heading low dose ketamine treatment at http://neurotalk.psychcentral.com/thread88065.html If there's a single take home point to that thread, and the articles cited in the posts, it's that of the folks who get "low dose" infusions (as opposed to the 5-day comas that are being induced in Germany, via Robert Schwartzman, MD in Philadelphia and in Monterey, Mexica through Dr. Anthony Kirkpatrick in Tampa, which appears to offer more hope, at substantially greater risk, to the chronically afflicted) those who have had CRPS/RSD for only a few months tend to have much better long term results than everyone else.

Another thread to the same effect (running about the same time) was Article: good news for the newly diagnosed, fair news for the rest of us at http://neurotalk.psychcentral.com/thread88983.html which like the thread mentioned above, was centered in large part around an article bt Dr. Schwartzman, in this case, "The Natural History of Complex Regional Pain Syndrome," Schwartzman RJ, Erwin KL, Alexander GM, Clin J Pain 2009;25:273-2, which is freely available off of the RSDSA website at http://rsds.org/2/library/article_ar...lexanderGM.pdf

A third thread (and like the last initiated by me: I tend to have a better memory for things I've written, as opposed to read, what can I say?) is Ketamine, the article that ran a month ago at http://neurotalk.psychcentral.com/thread104838.html That thread was centered on what may be, at a practical level, the most significant ketamine study to date, where it was the world's first double-blind placebo controlled study, "Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study," Schwartzman RJ, Alexander GM, Grothusen JR, Paylor T, Reichenberger E, Perreault M, Pain 2009 Sep 22, available on the RSDSA Medical Article Achieve page at http://www.rsds.org/2/library/articl...n_Pain2009.pdf
And the authors were not disappointed:

This study showed that intravenous ketamine administered in an outpatient setting resulted in statistically significant (p<0.05) reductions in many pain parameters. It also showed that subjects in our placebo group demonstrated no treatment effect in any parameter. The results of this study warrant a larger randomized placebo controlled trial using higher doses of ketamine and a longer follow-up period.

It is studies like this that will lead the way in forcing some now recalcitrant insurance companies (including WC carriers) to cover ketamine therapies without a requirement that the patient first "exhaust" other avenues of treatment, which is to say, put themselves over time out of that group of acute cases who are more likely to benefit from the technique. That said, and possibly because the authors were employing a slightly different techniques than had other low dose studies, the favorable results of the study were obtained from a population of CRPS patients who had been ill for at least six months, and some much longer:

There were no significant differences between those patients with a shorter duration of CRPS (11 patients with an average length of illness of 2.6 years and a range of 0.8–4.2 years) and longstanding patients (8 patients with an average length of illness of 12.2 years and a range of 6.8–20 years).

And for thread on another treatment altogether that also provided a significant incidence of "long term remission" in patients who had only had the disease for six months at the time they started treatment, check out IV regional block with low-dose tumor necrosis factor-alpha antibody infliximab at http://neurotalk.psychcentral.com/thread91280.html

I hope this didn't send you into informational overload, but the point I wanted to make is that time your husband is in good shape in terms of starting one of these treatments while still in the "acute stage," but time is nevertheless of the essence.

I know that it's not exactly down the road from you, but my sense of where your husband might be seen soonest, with the greatest likelihood of getting a relatively esoteric treatment would be the Cleveland Clinic. http://my.clevelandclinic.org/anesth...t/default.aspx As in, call today to see what could be scheduled. And in this regard, it has to be noted that the Mayo Clinic is not the place out of town pain patients want to go: I was advised by a pain management physician there that all of the more cutting edge therapies are reserved for people who live in the immediate area, with whom they can follow up on a regular basis.

Good luck, let us know what we can do for you and welcome again,

Mike

ps For future reference, you are more likely to have you post noticed by more people if you use it to start a new thread, as opposed to one that's been around for years, although I understand and appreciate your desire to honor this thread in particular.

I copied mjl1261 1st post to a new thread here-
http://neurotalk.psychcentral.com/sh...268#post589268

Has anyone seen this:

http://brandyupdate.wordpress.com/

November 20, 2009

Remission!

Brandy and Elizabeth both got good news today . . . they don’t have to come back to Dr. Schwartzman for any more treatments unless they need to! They have to come back for a re-check in a year, but basically they are in remission! Hooray!

These 2 young ladies went through the Ketamine Coma.

Another 2 who have come through this!

I have seen 6-7 people who have recovered from this. Very encouraging!

With God, all things are possible!

Irene

Would you be available to talk to a friend of mine? He is suffering greatly from RSD and would love to know the name of the doctor who helped you. He does not have internet and wants to know how to contact you. My name is LJ and i can be reached at the following email:**

Quote:

Originally Posted by lisashea (Post 51149)

WOW!!! Lisa, I'm so glad to read your post....... I hope you are still out there checking this forum. I'm new to this forum so my first post is going to be trial and error...... after I've learned how to comment on this post I will tell my story.

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.

Quote:

Speaking of alternative treatments, I've found a site for a pain center in Corpus Christi, TX where they use a painless, non-invasive treatment that stimulates accupressure/accupuncture points. A Dr. Rhodes runs it. They supposedly get great results but they don't post testimonials from people who were disappointed. Has anyone out there heard of this place? Are they good or a bunch of quacks? We live in Oklahoma so the drive down would not be difficult for us. Any ideas how much they charge for these treatments? We have some money saved up and are currently debt-free but are plain, working folks like everyone else. Still, I would mortgage everything I own in order to pay, if it works.

Anyway, I just want to say again thanks for the positive posts. They have done more for my husband than any of the drugs or the nerve blocks! I understand that people out there who have dealt with this for a long time may think I'm being a whiner and if so, I apologize. I don't mean to. I don't feel whiney. It's just that this is brand new to us and right now we're pretty much just terrified.