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)


advertisement
Reply
 
Thread Tools Display Modes
Old 10-17-2012, 11:08 PM #1
denise2 denise2 is offline
New Member
 
Join Date: Oct 2012
Posts: 5
8 yr Member
denise2 denise2 is offline
New Member
 
Join Date: Oct 2012
Posts: 5
8 yr Member
Default help finding a good rsd doc

Hi my name is denise i recently joined in hope of find some help with rsd and some support to help me get though the hell i am in i figure out i have rsd about8 months ago and i go to a pain doc but he wont help me with the pain. I tell him the pain pills arent helping and he wont do anything. I am misable almost all the time and i dont sleep cause i am in soooo much pain and i can hardly move my arm from all the pain. Does anyone know a good doc close to butler,pa that takes gateway? Thanks soo much
denise2 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AintSoBad (07-12-2013)

advertisement
Old 10-18-2012, 12:03 AM #2
Sam Sam is offline
Junior Member
 
Join Date: Oct 2012
Location: midwest USA
Posts: 96
8 yr Member
Sam Sam is offline
Junior Member
 
Join Date: Oct 2012
Location: midwest USA
Posts: 96
8 yr Member
Default re good Dr.

Denise,
If your Dr. is an M.D. as opposed to a pain specialist, you need to find both a pain clinic and a Pain specialist. Pain that is not something you can see is often difficult to get people to believe. Some think its just drug seeking behavior, while others just don't know how to deal with it.

When I first started getting intractable migraines, I would show up at emergency rooms, the local urgency care facilities looking for relief. They would put me in a bright room in a noisey area and make me wait for an hour. When a Dr. finally came in, they didn't want to use any pain medications. Having been through migraine after migraine, I knew what worked and what didn't. None of the Dr.s would listen and I'd wind up be injected with botox related drugs, anything but pain medication. I'd get up and leave, furious that no one would listen or believe me.

During one hospital stay during which I almost lost my hand because they kept injecting a drug I knew didn't work and wound up being overly sensitive to, they sent a pain specialist up to do a nerve block known to have a high rate of facial paralysis etc. The pain specialist came up and told me right off that he woudn't have it done to him and recommended I not do it. He became my Dr., and since then my life has changed. i go to this Dr. at a chronic pain clinic, and regardless of the fact that my pain cannot be seen or explained through MRIs and CTscans, he treats me with strong pain medications and has even brought a perscription to the house for me when things were so bad I couldn't get out of bed and couldn't be left alone.

Pain clinics are strict. Usually you have to have check ins with blood or urine tests every three to six months to make sure you have not fallen into a drug habit, but they believe their patients, involve them in their treatment and believe in pain that cannot be seen or won't show up on tests.

I strongly urge you to find a pain clinic near you. Make an appointment with or without your Dr.s referal. You need relief and a Dr. who is used to various pain conditions. You can start with the phone book, internet or asking around to find one. Don't give up. If you don't, you will only wind up angry and depressed and painful. YOu don't have to live in pain and shouldn't have to.

Sam
Sam is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSDcandice (10-18-2012)
Old 10-18-2012, 09:59 PM #3
denise2 denise2 is offline
New Member
 
Join Date: Oct 2012
Posts: 5
8 yr Member
denise2 denise2 is offline
New Member
 
Join Date: Oct 2012
Posts: 5
8 yr Member
Default

I am sooo glad you found a great doc to help you. Its hard to find a doctor thats wants to help anymore. They all think it is in you head. I go to the hospital thats right beside my house and they dont help they just say take asprin and put heat on it. I have to have someone take me to another close hospital which is 30 mins from my home when the pain gets sooo miable i cannt take it. I go to a pain clinic now and they arent helping. The pain pills they are giving me isnt helping and the pain is getting unbearable. I call doc i have found on intertnet and in the phone book but they dont take my insureace or arent taking new patients. I am sooo misable i dont know what to do i just want the pain to b bearable.
denise2 is offline   Reply With QuoteReply With Quote
Old 10-19-2012, 09:31 PM #4
fmichael's Avatar
fmichael fmichael is offline
Senior Member
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
Default finding a good - and non-self-interested - pain doc

Dear Denise -

Hi. By way of "quality control," the easiest way to go board certified in pain management by the American Board of Pain Medicine (ABPM), the group which certifies most of the pain management fellowships in the U.S. What this means is that, in addition to a doctorís residency, s/he took a separate one-year fellowship in pain medicine, and then sat for and passed an 8 hour written exam. They are serious people.

To find ABPM certified specialists in pain medicine in your area, go to its Public Directory. You can search by geographic area, gender and "specialty of origin" - the field in which the doctor completed his or her residency.

That said, not all ABPM certified specialists in pain medicine do a lot of work with RSD/CRPS, in fact, most probably treat lower back pain more than anything else. So for what itís worth, you probably donít someone who completed a residency in Physical Medicine for CRPS. In fact, for RSD/CRPS a background in neurology is probably favored, with anesthesiology and psychiatry (or in the case of my pain doc, a combination of the two) coming in tied in close second.

Alternatively, the American Board of Anesthesiology (ABA) maintains a sub-certification program in pain management that also requires a 12-month fellowship following the completion of a residency, but in its case, a residency only in anesthesiology. While I am not aware of any search engine for doctors who are so-certified, you can determine the board certification status of any anesthesiologist by just by accessing the ABA's homepage.

Finally, when you find a doctor, it's important that you do interviewing of your own at the first appointment. In particular, you will want to know whether you will see a physician at all of your scheduled appointments (as opposed to a physician's assistant or nurse practitioner) and, most importantly, inquire as to the physician's long-term protocols for dealing with RSD/CRPS. You are looking for someone who employs multiple therapies simultaneously, such as physical therapy, pain medication, and nerve blocks (injections of local anesthetics, typically close to the spine and performed under fluoroscopy, that are usually most effective if you have had RSD for less than six months), as well as perhaps somewhat more novel therapies, such as "Mirror Therapy and Graded Motor Imagery" and/or extremely low power DC current and/or magnetic stimulation of the brain's motor cortex.

BUT, if what your hear instead is a discussion of implantable medical devices, such as spinal cord stimulators (SCS) or pain pumps, I would personally keep looking for another doctor. The bottom line on implantable medical devices being that while they are highly remunerative for the doctor, there is, for instance, little if any peer-reviewed evidence suggesting that SCS is effective in CRPS patients for more than three years: while there is plenty of evidence of too many people developing nasty side-effects along the way.

I hope this is useful. Good luck in your search!

Mike
__________________
I have learned that to be with those I like is enough.

- Walt Whitman
fmichael is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
LIT LOVE (10-20-2012)
Old 10-20-2012, 12:15 AM #5
Kevscar
Guest
 
Posts: n/a
Kevscar
Guest
 
Posts: n/a
Default

fmicheal
I read a paper a few months back that said 60% of all RSD sufferers who are given SCS's get RSD at the incision sites and pain relief only varies between 15 and 50%.
Not somethig I would ever consider although I have read posts by people saying that despite the new RSD they consider themselves to be in less pain than previously
  Reply With QuoteReply With Quote
"Thanks for this!" says:
AintSoBad (07-12-2013)
Old 10-20-2012, 01:10 AM #6
fmichael's Avatar
fmichael fmichael is offline
Senior Member
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
Default

Quote:
Originally Posted by Kevscar View Post
fmicheal
I read a paper a few months back that said 60% of all RSD sufferers who are given SCS's get RSD at the incision sites and pain relief only varies between 15 and 50%.
Not somethig I would ever consider although I have read posts by people saying that despite the new RSD they consider themselves to be in less pain than previously
Yeah, they may be in less pain, but for how long??? (And as you note, at what cost?)

The other thing even the most ardent supporters acknowledge is that SCS doesn't stop the progression of other aspects of the disease, e.g., sympathetic dysfunction in its myriad of forms, something that might be addressed - if you're lucky - with a bona fide treatment.
__________________
I have learned that to be with those I like is enough.

- Walt Whitman
fmichael is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AintSoBad (07-12-2013)
Old 10-20-2012, 12:07 PM #7
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
Default

Quote:
Originally Posted by Kevscar View Post
fmicheal
I read a paper a few months back that said 60% of all RSD sufferers who are given SCS's get RSD at the incision sites and pain relief only varies between 15 and 50%.
Not somethig I would ever consider although I have read posts by people saying that despite the new RSD they consider themselves to be in less pain than previously
Again, you're the only person I've ever seen claim such a study exists. link?
LIT LOVE is offline   Reply With QuoteReply With Quote
Old 10-20-2012, 05:16 PM #8
fmichael's Avatar
fmichael fmichael is offline
Senior Member
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
Default long term effectiveness of SCS

Quote:
Originally Posted by LIT LOVE View Post
Again, you're the only person I've ever seen claim such a study exists. link?
On reflection, this isn't the study you've requested, but goes to a fundamental point that is all too often ignored . . .

Spinal cord stimulation for chronic reflex sympathetic dystrophy--five-year follow-up, Kemler MA, de Vet HC, Barendse GA, van den Wildenberg FA, van Kleef M, N Engl J Med. 2006 Jun 1;354(22):2394-6, 96.

Academic Medical Center, Vrije Universiteit Medical Center, Amsterdam, and Maastricht University Hospital, Maastricht, the Netherlands
The long-term follow-up analysis demonstrates that the pain-alleviating effect of spinal cord stimulation in chronic reflex sympathetic dystrophy diminishes with time, as compared with that in a control group, and is no longer statistically significant after three years. [Emphasis added.]

But, see, Long-term outcomes of spinal cord stimulation with paddle leads in the treatment of complex regional pain syndrome and failed back surgery syndrome, Sears NC, Machado AG, Nagel SJ, Deogaonkar M, Stanton-Hicks M, Rezai AR, Henderson JM, Neuromodulation. 2011 Jul-Aug;14(4):312-8; discussion 318. doi: 10.1111/j.1525-1403.2011.00372.x. Epub 2011 Jul 7.

Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, Cleveland, OH, USA.
Abstract

INTRODUCTION: Spinal cord stimulation (SCS) is frequently used to treat chronic, intractable back, and leg pain. Implantation can be accomplished with percutaneous leads or paddle leads. Although there is an extensive literature on SCS, the long-term efficacy, particularly with paddle leads, remains poorly defined. Outcome measure choice is important when defining therapeutic efficacy for chronic pain. Numerical rating scales such as the NRS-11 remain the most common outcome measure in the literature, although they may not accurately correlate with quality of life improvements and overall satisfaction.

METHODS: We reviewed the medical records of patients with failed back surgery syndrome (FBSS) or complex regional pain syndrome (CRPS) implanted with SCS systems using paddle leads between 1997 and 2008 at the Cleveland Clinic with a minimum six-month follow-up. Patients were contacted to fill out a questionnaire evaluating outcomes with the NRS-11 as well as overall satisfaction.

RESULTS:A total of 35 eligible patients chose to participate. More than 50% of the patients with CRPS reported greater than 50% pain relief at a mean follow-up of 4.4 years. Approximately 30% of the FBSS patients reported a 50% or greater improvement at a mean follow-up of 3.8 years. However, 77.8% of patients with CRPS and 70.6% of patients with FBSS indicated that they would undergo SCS surgery again for the same outcome.

CONCLUSION: Patients with CRPS and FBSS have a high degree of satisfaction, indexed as willingness to undergo the same procedure again for the same outcome at a mean follow-up of approximately four years. The percentage of satisfaction with the SCS system is disproportionally greater than the percentage of patients reporting 50% pain relief, particularly among patients with FBSS. This suggests that the visual analog scale may not be the optimal measure to evaluate long-term outcomes in this patient population. [Emphasis added.]

© 2011 International Neuromodulation Society.

PMID: 21992424 [PubMed - indexed for MEDLINE]

Unfortunately, the abstract to the article by Sears NC et al, doesn’t provide a link through which I could purchase it, so I have no way to comment on its methodology, etc. The latter is a particular concern where an "n of 35 eligible patients" is a remarkably small number, in light of the number of SCS implantation procedures on CRPS patients done by the two institutions - including The Cleveland Clinic - over the relevant 11-year time period, certainly numbering well into the hundreds.

Finally, it should be born in mind, that, while Kemler et al reported on a bona fide longitudinal study - which found its way into the NEJM - the report out of Cleveland is based solely on those patients who chose to respond to a survey questionnaire, which may explain while it was published in Neuromodulation, the journal of the International Neuromodulation Society, which describes the “Scope of Neuromodulation Advances” as follows:
Neuromodulation employs advanced medical device technologies to enhance or suppress activity of the nervous system for the treatment of disease. These technologies include implantable as well as non-implantable devices that deliver electrical, chemical or other agents to reversibly modify brain and nerve cell activity.
In other words, it’s a trade journal.


Mike


PS And my apologies f I missed an earlier request for the citation.
__________________
I have learned that to be with those I like is enough.

- Walt Whitman

Last edited by fmichael; 10-20-2012 at 08:12 PM. Reason: (re-read the question)
fmichael is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AintSoBad (07-12-2013), LIT LOVE (10-21-2012)
Old 10-20-2012, 08:54 PM #9
Kevscar
Guest
 
Posts: n/a
Kevscar
Guest
 
Posts: n/a
Default

LIT LOVE
Checked 120 plus links in my favoutiresand 150 + documents I have downloaded and I don't have it probably because from the amount of posts I have read I thought it was around 50% anyway.
You can choose to believe me or not but here are 3 things I know which I'll bet the vast majority of forum members have never heard of before.
There are 2 different versions of RSD?CRPS type 1 and the second has to be treated differently.
A Paper saying that there is growing evidence doctors have been looking in the wrong direction for 65 years and sympathetic reflexs may not be the cause.
7-8% of us may get wounds that never heal.
Tell me which ones you have never heard of and I'll post links
  Reply With QuoteReply With Quote
Old 10-20-2012, 11:47 PM #10
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
Default

Quote:
Originally Posted by Kevscar View Post
LIT LOVE
Checked 120 plus links in my favoutiresand 150 + documents I have downloaded and I don't have it probably because from the amount of posts I have read I thought it was around 50% anyway.
You can choose to believe me or not but here are 3 things I know which I'll bet the vast majority of forum members have never heard of before.
There are 2 different versions of RSD?CRPS type 1 and the second has to be treated differently.
A Paper saying that there is growing evidence doctors have been looking in the wrong direction for 65 years and sympathetic reflexs may not be the cause.
7-8% of us may get wounds that never heal.
Tell me which ones you have never heard of and I'll post links
I'm not arguing that any of the info is correct or incorrect. The data is meaningless when quoted out of context, IMO. It is very easy to manipulate data. Were there 20 patients in the control sample or 2000... Etc.

Throwing out unrelated bits of information that have nothing whatsoever to do with the validity of a study you're quoting, but can't link to just confuses me further.

fMichael is a good role model for us all...not only does he cite his references, he breaks down potential concerns about the validity of certain data.
LIT LOVE is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
need help finding a good neurosurgeon CarolynB12 New Member Introductions 1 03-31-2011 04:21 AM
finding the good old stuff annie Epilepsy 11 09-02-2006 11:22 PM


All times are GMT -5. The time now is 01:24 PM.

Powered by vBulletin • Copyright ©2000 - 2021, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2021 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.