A Prominant Pain doc told me I dont have RSD?
 

Went to a pain doc in NYC and he does not believe I have RSD. Let me briefly go over my history and see what you guys think. I think I definably have RSD
1997- starting getting a cold left foot (I was born with right hip dysplasia and walk with a limp putting a lot of strain on my left foot), No one could figure out why my foot got cold and achy....2003- Three phase bone scan results indicate RSD, Had a right hip replacement in 2003, Following the surgery my foot started to get hot and cold. Mirroring in right foot, hands starting stinging and then muscle wasting began in my arms/elbows. My feet still gets hot and cold and major pain. I use a scooter to get around--OK so why does he think I dont have it- 1- I don't have skin sensitivity in my left foot, 2-muscle wasting is far from the foot area-muscle wasting should be in foot. 3 I dont have abnormal hair or toenail growth. He thinks I have an autonomic disease but he does not know what I have. He even kind of laughed about the diagnosis of RSD -that it was so wrong. ARG- He is going to call some of his colleagues about me..Oh and he did and muscle test which showed that none of my pain is coming from muscles (directly)

Thanks for your thoughts....

Deb

Do you get blotchy/mottled skin, color changes of skin, swelling?

I thought the sensitivity to touch & breezes is a major RSD indicator:confused:
I'm interested to hear what our members think.

Did, or do you, use any crutches or a cane often when the foot is bad?

Other possibles -
the bone scan results could be caused from something else.

the limping for many years could impacted spinal alignment & fascia - and those might be causing compressions on the nerves to the foot.

if cane or crutches have been used a lot that might be related to the hand /arm issues.

rsd?
 

I do get mottled skin -which this doctor saw....I did not use crutches much- just a little after the hip replacement....And how about the mirroring? is there any other disease that would cause mirroring?

TY
Deb

PS- I would love to not have RSD but I truely believe I do...

There is one RSD case that comes to mind. This person showed several symptoms of RSD for years. A doctor found trapped nerves in this persons foot after many years of suffering, released them and all symptoms went away imediately. As I recall this person had previous EMGs but showed no trapped nerves but this doctor found them from EMG results he/she performed.

ty
 

OK but again, why would i have mirroring pain in right foot...muscle wasting in my arms and now back etc,,,,

Thanks
Deb

Perhaps you're starting at the wrong doctor?
 

Most RSD is more of a byproduct that began after some other accident or disease hit first, so that's where I'd start as far as trying to figure out what the nature of the problem is.

Though you listed quite a few things that would make me wonder if you are in fact dealing with RSD, I'd first be wanting to know what other damage is involved such as nerve damage or some other possible disease. This kind of diagnosis can only be found through the right kind of doctor. Sadly enough, pain doctors are rarely the right starting point by my opinion. The only time they can really help is once you have a firm diagnosis that's telling us why you're suffering with pain and the associated problems that go with it.

Because of the unique ambiguity of RSD, it can be easy to blame RSD when in all reality the cause of your health problems might just be something else altogether. My best advice is to seek out someone you trust who actually deals with the physical side first and then from there head back to your well respected pain doctor with whatever new information they learn so your pain can be treated more effectively. You will find your answers I promise, it's just we have to be patient during the learning phase. Best of luck, Bob.

Hi Deb,

So sorry to here you are not doing well. But I think a lot of us who are diagnosed with RSD have other lingering problems. This is one of the main reasons, until I confince myself that I don't have nerve damage that can be corrected, I will not do anymore invasive RSD Treatments. I have been told I have serious nerve damage from my injury,CRPS II and PN but know doctor is willing to really sink there teeth into my case,as far as the nerve damage I have a great PM doctor, because of all my arm has been through. I have been told it's a miracle I did as wonderful as I did and got 90% range of motion and use back when they estimated only 40-50%. So Deb I understand your continuing search for the correct answer, because I am also left with pain not like in the beginning but still have it.

If you don't mind me asking who is the doctor you saw in NYC?

Good Luck

Gabbycakes

Sorry I forgot one thing. You stated you don't have normal nail and hair growth? I have been told and read that is one of the biggest signs of RSD,over growth, it was mine and my PT person picked it up. When you have a cast on for a long time that can also cause abnormal hair growth but that's temporary I think that's why it was not picked up by my orthopedic surgeon. Just curious.

TY
 

Thanks for your response. I have been to many well respected doctors and neurologist. My nerve conduction tests were negative a long while back. I keep sticking with the rsd diagnosis because of the mirroring pain and temp changes and muscle weakness. The doc I saw in NYC is going to speak to some of his colleagues and get back to me soon.....TY!

Debbie

Deb, as I recall I think this person who suffered from these trapped nerves also had spread too. I will say this person used to post on this site and actually posted many times about her RSD pain and symptoms. Sometime later she created a thread about her nerves in her feet were released and had immediate pain relief. May be a member will remember her. As often happens when those who get great releif from RSD and or severe nerve pain these members tend to drift off unfortuately but understandibly.

TY
 

Thanks for your responses...The doc I saw in NYC is Norman Marcus..His office is called the Pain Institute which is pretty funny because he is the only doc there I think..

Dear Debbie -

I appreciate your frustration, I suspect it's something most of us have gone through, and it's not a lot of fun when dealing with disability insurance and the like. I had the happy fortune of having it done at the hands of another "expert," whose work on the incidence of CRPS was subsequently questioned/debunked as overly narrow in a couple of studies, including work of de Mos et al, below.

First and foremost, know that there are competing academic views on the appropriate criteria for the diagnosis of CRPS, which are most succinctly laid out in the notes to "Table 1b" in de Mos M, de Brijn AGJ, Huygen FJPM, Dieleman JP, Stricker BHC, Sturkenboom MCJM, The incidence of complex regional pain syndrome: A population-based study, Pain 2007;129:12-30 [p. 5 of Epub on RSDSA site] FULL TEXT @ http://www.rsds.org/2/library/articl..._pain_2006.pdf:

A. IASP criteria (Stanton-Hicks et al., 1995); 1. Develops after an initiating noxious event (type 1) or after a nerve injury (type II). 2. Spontaneous pain or allodynia/hyperalgesia that is not limited to the territory of a single peripheral nerve and is disproportionate to the inciting event. 3. There is or has been evidence of edema, skin blood flow abnormality, or abnormal sudomotor activity in the region of the pain since the inciting event. 4. This diagnosis is excluded by the existence of conditions that would otherwise account for the degree of pain and dysfunction.

B. Bruehl criteria (Bruehl et al., 1999; Harden et al., 1999): 1. Continuing pain which is disproportionate to any inciting event. 2. Must report at least one symptom (history) in each of the following categories. Must display at least one sign (physical examination) in two or more of the following categories. Sensory: hyperesthesia, hyperalgesia (to pinprick) and/or allodynia (to light touch). Vasomotor: temperature asymmetry and/or skin color changes and/or skin color asymmetry. Sudomotor/edema: edema and/or sweating changes and/or sweating asymmetry. Motor/trophic: decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin).

C. Veldman criteria (Veldman et al., 1993): 1. Four or five of: unexplained diffuse pain; difference in skin color relative to other limb; diffuse edema; difference in skin temperature relative to other limb; limited active range of motion. 2. Occurrence or increase of above signs and symptoms after use. 3. Above signs are present in an area larger than the area of primary injury or operation and including the area distal to the primary injury. [This is apparently mandated as the Dutch national standard; I do not know if it is used in the US at all.]

And for reference, here are a few online definitions of the medical terms used above:

Allodynia: pain resulting from a stimulus (as a light touch of the skin) which would not normally provoke pain; also: a condition marked by allodynia.

Edema: a condition of abnormally large fluid volume in the circulatory system or in tissues between the body's cells (interstitial spaces).

Hyperalgesia: increased sensitivity to pain or enhanced intensity of pain sensation.

Hyperesthesia: unusual or pathological sensitivity of the skin or of a particular sense to stimulation (tactile hyperesthesia of the leg).

Sudomotor: of, relating to, or being nerve fibers controlling the activity of sweat glands (sudomotor activity).

Tophic: promoting cellular growth, differentiation, and survival (nerve growth factor is a trophic agent).

De Mos et al summarize the standards as follows:

These criteria sets differ from each other in the types and the number of symptoms and signs that have to be present in order to establish the diagnosis CRPS. The IASP criteria are regarded as very sensitive, whereas the Bruehl criteria have lower sensitivity, but are highly specific. The Veldman criteria are the only ones that theoretically allow a diagnosis of CRPS in the absence of pain. (Emphasis added.)

Get that? The ISAP criteria will pick up many more cases of CRPS (including some false positives), while use of the Bruehl criteria will miss some people with CRPS, but it’s report of positive cases will be highly reliable. For those who labored through a stat class along the way, that’s the choice between too many false positives (Type I Error) or false negatives (Type II Error).

And speaking of Type II Error, the Bruehl criteria looks for, among other things, “hyperalgesia (to pinprick),” which is curious following the determination that a hallmark of CRPS is “small fiber neuropathy,” which in turn is most easily recognized through decreased sensitivity to pinpricks! See, Oaklander AL, Rissmiller JG, Gelman LB, Zheng L, Chang Y, Gott R, Evidence of focal small-fiber axonal degeneration in complex regional pain syndrome-I (reflex sympathetic dystrophy), Pain 2006; 120: 235-243, FULL TEXT @ http://www.rsds.org/2/library/articl..._pain_2006.pdf and, Walk D, Wendelschafer-Crabb G, Davey C, Kennedy WR, Concordance between epidermal nerve fiber density and sensory examination in patients with symptoms of idiopathic small fiber neuropathy, J Neurol Sci. 2007 Apr 15; 255(1-2):23-6, Epub 2007 Mar 2:

Abstract
Quantitation of epidermal nerve fiber (ENF) density is an objective diagnostic test of small fiber neuropathy (SFN). For a diagnostic test to be clinically useful it should correspond well with clinically meaningful physical findings. We performed a retrospective analysis of the concordance between foot ENF density and clinical findings in all patients seen at our institution with possible idiopathic SFN who underwent skin biopsy for ENF density determination. We found a high concordance between reduced foot ENF density and loss of pinprick sensitivity in this patient population. Our findings indicate that ENF density determination is a clinically relevant objective test in patients undergoing evaluation for possible SFN.

PMID: 17337273 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/17337273

So one way of approaching what happened with Dr. Marcus may be to suggest that he was using an overly restrictive set of diagnostic criteria. (I leave it to you to judge whether you should ask him to specify which set of diagnostic criteria he employed: there is always the issue of whether - in a formal situation where you are worried about his written diagnosis - it is wise to ask a question to which you don't know the answer. Where are you if he says he used the ISAP criteria?)

Then too, there is the fundamental point that no two cases of CRPS present alike, and it can’t be approached with just a checklist. In this regard, you may want to take a look at the thoughts of probably the leading CRPS specialist in the UK, “Prof Candy McCabe, Consultant Nurse” and her co-author, Prof D Blake, An embarrassment of pain perceptions? Towards an understanding of and explanation for the clinical presentation of CRPS type 1, Rheumatology 2008;47: 1612–1616, FULL TEXT @ http://rheumatology.oxfordjournals.o.../1612.full.pdf :

Abstract
Complex regional pain syndrome (CRPS), a fairly common problem in rheumatological and orthopaedic practice, is an allodynic pain state of uncertain pathology often variably and unpredictably responsive to treatments. Although published diagnostic criteria are available, in the reality of clinical practice these do not appear to encompass the wide variety of symptoms that a patient may present with. This leads to scepticism on the part of the clinician and confusion for the sufferer. This article aims to provide some explanations for an often bewildering clinical picture. We provide a construct for the plethora of symptoms that we have entitled 'the embarrassment of pain perceptions'. With the aid of a case report we examine recent research that suggests how peripherally based symptoms and signs arise from changes within the central nervous system, with particular attention given to the control function of the motor-proprioceptive integrative system. We speculate how these changes within the central nervous system may provide the patient with CRPS the ability to access complex layers of lower level perceptions that are normally suppressed. We propose that such a system may explain some of the clinical puzzlements seen in this condition and suggest that the complexities of CRPS may provide an insight into brain development through evolution, which is a fruitful area for interdisciplinary clinical and scientific research.

PMID: 18625661 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/18625661 It’s a nice little article and worth the read.

I hope this is helpful.

Mike


ps In my case, I only got a solid Dx of CRPS after Dr. Schwartzman noticed some very subtle "trophic changes" that others had missed. Things like the pattern of growth in my body hair (got that ladies?) including something called "pilo erection" - where the hair on the calves was standing on end. It was at least two years into this that I started to have any change in my skin tone that a neurologist would recognize, and the edema came 3 - 4 years after that! Once more, the best diagnosis is always clinical. Heck, just after I returned from MN and my debacle with Expert No. 1, just because of all the suggestions that my pain was physiological, I sought out an opinion from an older guy whom I was advised was one of the top 3 foot surgeons in LA ("and you don't want to see the other two") whose first question was "Are your legs always that blue." I left his office in Long Beach with a Dx of "sympathetically mediated pain" in 2002 (along with the comment that "you couldn't pay me enough to touch your feet with a scalpel") and it was still another year and a half of professional doubters before I saw finally saw Dr. Schwartzman.

And why did this orthopedic surgeon get it when most of the neurologists didn't? Because he had logged enough time that subtle was significant. Just like an old friend of my grandfather's who had to retire after he went blind, and to keep busy, took a job as the medical (non-psychiatric) doctor in the local state hospital. One day a new patient comes in for a brief physical and as he reaches to shake her hand, feels oiliness in her skin suggesting a metabolic disorder. That was confirmed and treated by the Mayo Clinic within a few days, whereupon her psychosis completely resolved.

Deb,

Thanks Deb, I have heard of him, only good things. I hope he can help you find a solution keep us posted.

I will be starting my search for a orthopedic surgeon with a heavy vascular back round and knows the elbow and forearm or even a plactic surgeon they are extremely trained in the vascular/nerve area which I feel is my problem and if it can be fixed I would almost be normal. But thats a big if.

Gabbycakes

a dark footnote
 

As I was writing last night, I had a nagging sense that there were proposed revisions to the IASP criteria out there, and sure enough there are, and their proponents are pushing hard for their adoption in the name of greater specificity. See, e.g., Validation of proposed diagnostic criteria (the "Budapest Criteria") for Complex Regional Pain Syndrome, Harden RN, Bruehl S, Perez RS, Birklein F, Marinus J, Maihofner C, Lubenow T, Buvanendran A, Mackey S, Graciosa J, Mogilevski M, Ramsden C, Chont M, Vatine JJ, Pain 2010 Aug; 150(2):268-74, Epub 2010 May 20, FULL TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...ihms222091.pdf

Thus far, I see no indication that the proposed changes have been adopted, but largely the same group of authors, led by R. Norman Hardin, are also seeking the establishment of a system that ranks the severity of CPSP cases, so that a while diagnosis of CRPS is accepted dichotomous diagnostic criteria for CRPS, the issues of severity remains very much on the table, See, Development of a severity score for CRPS, Harden RN, Bruehl S, Perez RS, Birklein F, Marinus J, Maihofner C, Lubenow T, Buvanendran A, Mackey S, Graciosa J, Mogilevski M, Ramsden C, Schlereth T, Chont M, Vatine JJ, Pain 2010 Dec; 151(3):870-6. Epub 2010 Oct 20:

Center for Pain Studies, Rehabilitation Institute of Chicago, Chicago, IL 60611, USA. nharden@ric.org

Abstract
The clinical diagnosis of Complex Regional Pain Syndrome (CRPS) is a dichotomous (yes/no) categorization necessary for clinical decision-making. However, such dichotomous diagnostic categories do not convey an individual's subtle and temporal gradations in severity of the condition, and have poor statistical power when used as an outcome measure in research. This study evaluated the validity and potential utility of a continuous type score to index severity of CRPS. Psychometric and medical evaluations were conducted in 114 CRPS patients and 41 non-CRPS neuropathic pain patients. Based on the presence/absence of 17 clinically-assessed signs and symptoms of CRPS, an overall CRPS Severity Score (CSS) was derived. The CSS discriminated well between CRPS and non-CRPS patients (p<.001), and displayed strong associations with dichotomous CRPS diagnoses using both IASP diagnostic criteria (Eta=0.69) and proposed revised criteria (Eta=0.77-0.88). Higher CSS was associated with significantly higher clinical pain intensity, distress, and functional impairments, as well as greater bilateral temperature asymmetry and thermal perception abnormalities (p's<.05). In an archival prospective dataset, increases in anxiety and depression from pre-surgical baseline to 4 weeks post-knee arthroplasty were found to predict significantly higher CSS at 6- and 12-month follow-up (p's<.05). Results indicate the CSS corresponds with and complements currently accepted dichotomous diagnostic criteria for CRPS, and support its validity as an index of CRPS severity. Its utility as an outcome measure in research studies is also suggested, with potential statistical advantages over dichotomous diagnostic criteria.

Copyright © 2010. Published by Elsevier B.V.

PMID: 20965657 [PubMed - in process]

http://www.ncbi.nlm.nih.gov/pubmed/20965657

This at least raises the suggestion that the guys at The Rehabilitation Institute of Chicago and other places with deep ties to the insurance industry - and in the case of Stanford University Medical School, just plain industry – have figured out that even if they lose the battle, and it becomes easier for people to get a Dx of CRPS – they may try cut their losses by arguing that people with ”cold CRPS” have in the large milder cases of the disease, on account of which more than a CRPS diagnosis is required to establish disability for those folks, and (2) those with sudden rises in depression and anxiety are suffering in part from pain catastrophizing, which must then color any determination of permanent disability.

I hope I'm wrong.

Good luck with that! I hope he finds a treatment for me....

Ivig
 

I think he is looking into the possibility of IVIG for me,...intravenous immunoglobulin

Hello Debbie
I can understand your frustration. My daughter who was first diagnosed in Feb 2010 with CRPS in her lower left leg, first by her orthopedic Doctor and than one month later by Dr. Norman Hardin at RIC. She has been through a lot this year and has seen a lot of experts including Dr. Timothy Lebenow at Rush and others all saying RSD. She has done RIC, Nerve Blocks (great relief, short periods of time) lots and lots of PT/OT but one thing did help her. We went to Pediatric pain rehabilitation clinic at Children’s Boston Hospital in Oct. We were there for 4 weeks. When we left she was off her crutches, was able to wear boots/shoes, clothes and starting running. Her pain level never changed but her sensitivity was much better; her skin stopped turning colors and was back in school. Yes, she has her good and her bad days but was functioning well.

Recently, she started getting “popping” in her joints, once in her wrist which lead to a spread in her left arm and then a pop in her shoulder which lead to a spread. I went to see a rheumatologist who knows about RSD to discuss this and he tells us she does not have RSD, if she did have it she does not anymore. He feels she has an entrapped nerve in her knee; trauma educed arthritis in her wrist and shoulder and may have fibromyalgia. Wants to do many tests which includes a EMG (worry some because heard really painful). All of this comes out of nowhere. We were planning to go to Rhode Island to try the Calmare treatments in January, but now we are not sure what to do. We will get ex-rays, blood tests, but hold off on the Bone Scan (doc says this will confirm whether she has RSD, which I don’t believe, to many tests come back normal, and still RSD) and EMG until we get second opinions. We have made plane flights for R.I already so that is still our plan to go. So confusing, so many opinions from different Doctors, very hard to know what to do.
Good Luck to you.

PS: Mike, Thank you for your posts on this site, you are so helpful and I have learned so much from your posts.

I have mirroring and that's when they conclusively diagnosed me with RSD....I have picture and videos that I had to show them (over 200) with explanations of the mood, stress level and general feelings that I was having at that moment. Find another doctor and don't give up! :hug:

Hi. And thanks! Reading your post, it's just as well that you are passing on the 3-phase bone scan (scintigraphy). There are some pretty clear indications than bone scans are effective in picking up CRPS only in the acute stage of the condition, which means five months or less from the onset of symptoms. That is, in terms of the abstracts I was able to find that addressed the issue:

1. Factors affecting the sensitivity and specificity of the three-phase technetium bone scan in the diagnosis of reflex sympathetic dystrophy syndrome in the upper extremity, Werner R, Davidoff G, Jackson MD et al, J Hand Surg Am. 1989 May;14(3):520-3 (predictive value of the three-phase technetium bone scan was affected by the duration of symptoms and the age of the patient; duration of symptoms less than 6 months, or ages more than 50 years substantially increased the sensitivity and positive predictive value of the three-phase technetium bone scan)

http://www.ncbi.nlm.nih.gov/pubmed/2738340

2. Sensitivity and specificity of 3-phase bone scintigraphy in the diagnosis of complex regional pain syndrome of the upper extremity, Wüppenhorst N, Maier C, Frettlöh J et al, Clin J Pain. 2010 Mar-Apr;26(3):182-9:

Abstract
OBJECTIVES: Joint and bone alterations are seldom mentioned in the diagnostic criteria for complex regional pain syndrome (CRPS) even though they are important for long-term outcome. Altered periarticular bone metabolism can be detected by 3-phase bone scintigraphy (TPBS). Although frequently examining the diagnostic efficacy of TPBS is debatable.

METHODS: In all, 78 TPBS (45 CRPS/33 control group) were evaluated qualitatively and quantitatively. Sensitivity and specificity of the qualitative blinded reviewer analysis (n=57) compared with quantitative region of interest (ROI)-based analysis over the metacarpophalangeal, proximal, and distal interphalangeal joints (n=74) were evaluated. Patients' sex, age, duration of CRPS, inciting event, extent of joint alteration, and handedness were included as covariables.

RESULTS: Qualitative blinded reviewer TPBS analysis had a high specificity (83%-100%). However, sensitivity was 31% to 50%. Interrater reliability was moderate (kappa score 0.56). Using the ROI-based evaluation, the highest sensitivity (69%) and specificity (75%) (ROI score > or =1.32) was shown for phase 3, whereas sensitivity of phases 1 and 2 rapidly declined to 50%. Duration of CRPS until TPBS was the only variable with significant impact on ROI scores of phase 3 (F=23.7; P=0.000; R=0.42). ROI scores declined with increasing duration of CRPS.

DISCUSSION: In conclusion, TPBS is a highly specific tool for diagnosing CRPS of the upper limb. ROI evaluation of phase 3 within the first 5 months after onset of CRPS is an appropriate additional diagnostic tool to confirm or exclude CRPS of the upper extremity.

PMID: 20173431 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/20173431

3. Patterns of three-phase bone scintigraphy according to the time course of complex regional pain syndrome type I after a stroke or traumatic brain injury, Park SA, Yang CY, Kim CG et al, Clin Nucl Med. 2009 Nov;34(11):773-6 (in the late stage of more than 21 weeks, there was no distinct difference in uptake between the CRPS-1 and control groups).

http://www.ncbi.nlm.nih.gov/pubmed/19851172

But it would be cynical to suggest that the rheumatologist was familiar with this literature - and sought to send your daughter into a test which would produce a negative result for CRPS - where I and no doubt many others have been sent into them too late by our neurologists!

That said, other parents on the forum have reported wonderful results with I understand are the inpatient programs at both Children's Hospital of Philadelphia and the Children's Hospital of the Cleveland Clinic. They may be able to direct you to a specific specialist who could handle cross-over pediatric CRPS/rheumatology issues at those institutions.

Mike

Hi Rachel's Daughter,

It is a crazy road but keep pushing eventually the right doctor and facility will click. Have you thought about NYC. From what I read you daughters problems started out to be orthopedic in nature. I'm not going to bore you with my whole story. But after I had a serious fall and almost lost my arm,long story. I went to many doctors allowed them to do surgeries that came out completely unsuccessful. Just my luck my son's hockey coach worked for the NBA and was high in the rankings so we asked him after not getting any better where do the Knicks send there players, the answer Hospital for Special Surgery. I know everyone tells me to get off that HSS band wagon. But to me they saved my life, it's taken some time but I went from absolutly no functioning in my arm, RSD that was making me literally lose my mind and I could only use 1 arm, thank god I am a lefty and my right arm was hurt.

Anyway the facility is unbelievable everything is done in a thoughtout methodical way that's just the way the whole place is run from the best surgeons to the janitor. I have heard the Peds. area's are great. There website is www.hss.edu.

Today,7 years later, I am on permenant disability but do work PT as a Business Consultant,that's what I did prior to getting hurt, I have 1 client close to home. I am able to work while being on SSD, but I have to watch how much I make, it's not the hours. Any honestly I could never go FT, as much as I would like to. My area of work can be stressful and sometimes the stress does flare me plus the other wonderful issues we have to deal with when you have RSD plus I also have PN.

Good luck,

Gabbycakes

I wish you the best. If you are considering going to HSS and have any questions please feel free.

Gabbycakes

In regards to the Calmare treatments here in RI with Dr. D'Amato - I have heard both really good reports and really bad reports. The good reports came from an RSDer who had it in just one limb - she was getting better and knew of others that were also having great results.

However, with full body RSD it seems that the Calmare treatments have not been successful. I recently spoke with a Mom whose daughter had a truly awful experience in RI, and who was aware of another full body RSDer who was only 17 years old, who landed in RI Hospital from the treatments, with anti-narc docs who wanted to take her off all her meds!! They were apparently the first 2 full body RSDers that had tried the treatments. Calmare did not work for either one of them at all, it just made their pain worse.

Just wanted to give you the heads up...

Good luck to you, Sandy

Calmar
 

I saw Dr D"amato for the treatment and it did nothing for me...I think you are correct that it works better for those who have it only in one limb. The doctor is pretty nice....just be prepared for a long explanation of this machine with a slide show- about an hr. It did not make me worse so I guess it is worth a shot if you have the $$- you may be able to negotiate the price a bit, If you have any questions please ask!

Debbie

Hi
 

If the calmare tx does not work maybe you should consider going back to the Childrens hospital...I would trust them more then the rhemetalgist you saw...

Hss
 

Gabby,

I agree with you about the HSS- I had my 5 day ketamine infusion and they were great! But besides that what else can they offer, Dr Richman did my procedure.

Deb

Hi Deb,

I think what HSS has to offer that other facilities don't is that they specialize in all types of orthopedic issues which is such a vast statement. The are rated #1 in Orthopedices in the US if not the world. RSD mostly starts with a orthopedic injuiry in 90% of the cases. So if there is any place that can find a possible reason for the RSD, a possible lingering problem other than the RSD or a better way of treating it it's there. They are one of the biggest research facilities for orthorpedics so they always have the latest technology.

I know your saying she just said she's searching for a different doctor, yes but what I'm searching for is someone to find something and then I would bring it right back to my surgeon at HSS and show him. His last statement to me was "If someone finds something I didn't show me and I'll fix it in a minute for you, but I don't think they will and I won't do another surgery on that arm unless it is going to do good". My DX stands now as RSD and PN. But I believe there's a lingering something, that 1 is keeping the RSD going and 2 keeping me from coming full circle with this injury.

It's worth a shot especially if you are willing to travel and have the means to do so.

Gabbycakes

Thank you everyone for your replies, I appreciate hearing from others who know what my daughter is going through. I believe we may wait on getting the Calmare treatments. I did review one of the girl’s blogs who did go for the Calmare treatments and it did not end very well at all. I am also following some other people going and they are not responding very well. I am just so disappointed, the RSD just traveled to her arm within the last 6 weeks. I wish we would have started this road sooner when it was only in her left lower leg.

We are heading to Boston in January; we were to stop at PPRC first for a follow up on her prior treatment and then go up to R.I for the calmare treatments. I will take the suggestion to look into seeing someone there, maybe get a second opinion. I really trust her doctor at the PPRC so it will be good to get his opinion too. Maddy is scheduled to get a blood test and x-rays, that’s as far as I am willing to go as of now.

Gabbycakes, good luck with the IVIG, have read some good things, please keep us posted

Again, thank you everyone for your reply, I will update soon

HI DEb
 

HI Deb, Well Ive met you- seen you and i think you do have rSD -how frustrating I mean for Gods sake you've been feeding your family off of paper plates for what 5 years now, i am so frustrated for you. I went to a pain management doctor not to long ago that wanted to question my rsd too.This is after all my suffering -the coma treatment etc. I mean give me a break, yes i wish, of course i did not have RSD as you do , but as usual he didn't have another reason for my lesions, full body pain etc. so please do not put too much weight in this , its happened to me too. I m very sorry this has happened to you. its so upsetting. my best to you Deb. cz

I know you are right. I was so frustrated with him -especially when he recommended a muscle biopsy!! But when I tired to say something he said "are you the RSD expert or am I" - F-U. I left you a pm

Deb