Neurochic

My surgeon did recommend a Pain Management Dr. During my last visit, he was telling me that he was helping an associate of his inserting pain med pumps in his patients, and told him about my symptoms. That Dr. told him that it sounds like RSD, so he relayed that info. He told me that this guy knew lots about the condition. My first thought was "great, I'll get on this immediately!" My insurance changed, so I checked the doctors that were in my network and he wasn't. I thought I'd be willing to pay the extra expenses if he was that good. I did some research on him and read some very bad reviews of him. One site had 15 reviews, and 12 of the 15 were bad, and I mean very bad. I'm going the correct route of the insurance and seeing my primary care dr. on Wednesday and getting a referral to someone in network so I can start moving forward.

Neurochick - Forgive me, but I just can’t agree. Based on everything I've read, Rich has a few weeks to initiate treatment in order to have a realistic chance of going into remission with those treatments currently available to the U.S. civilian population. Right now his diagnosis is CRPS. Unless someone know of any reason under the Sun why/how sympathetic blockage or the administration of therapeutic amounts of bisphosphonates could possibly exacerbate nerve entrapment, talk of looking for the proverbial zebras at the sound of encroaching hoof beats could just waste precious time. See, e.g., Early diagnosis in post-traumatic complex regional pain syndrome, Schürmann M, Gradl G, Rommel O, Orthopedics 2007 Jun;30(6):450-6 [ABSTRACT ONLY]:

Abstract
Since prospective studies confirmed an incidence of >10% of complex regional pain syndrome complication in patients after distal radial fracture, early diagnosis is important. Therapy should be commenced immediately with a systematic approach to avoid chronicity of the disease. Despite this, epidemiological studies revealed an extreme delay in effective treatment among complex regional pain syndrome patients, who were repeatedly referred to different physicians and often treated inadequately before being referred to specialized pain clinics. In post-traumatic patients, the clinical examination still is preferred to establish the diagnosis of complex regional pain syndrome. First, possible differential diagnoses must be excluded. Next the clinical criteria of the consensus definition should be checked and documented, if possible with the help of verifying procedures. Imaging methods could be applied; however, they are not useful for early diagnosis since sensitivity is low and the consequences of trauma may interfere with potential complex regional pain syndrome findings. In questionable cases repeated examinations after short periods detect the presence of complex regional pain syndrome in orthopedic patients, particularly if symptoms are progressive or an expected improvement does not occur.
PMID: 17598489 [PubMed - indexed for MEDLINE]

Rich - Please BEWARE ANYONE TALKING ABOUT ANYTHING IMPLANTABLE FOR SOMEONE WITH AS ACUTE CASE OF CRPS/RSD. SEE MY EARLIER POST. PLEASE!!!

I’ve gone through the directory of ABPM accredited specialists in the Houston area and came up with eight names, including information by specialty of origin, etc. Here’s what I’ve got:

Dr Lilly L Chen, MD
Specialty of Origin -Neurology
102 Travis St
Webster, TX 77598
Additional Fax : (281)218-9647
Office Phone: (281)332-4848
Office Fax: (281)338-1428

Dr Everton A Edmondson, MD
Specialty of Origin -Neurology
6560 Fannin St Ste 2202
Houston, TX 77030-2712
Office Fax: (713)797-0641
Office Phone: (713)797-1180

Dr Rangitkumar P Patel, MD
Specialty of Origin – Neurology
102 Travis St
Webster, TX 77598
Office Phone: (281)332-4848
Office Fax: (281)338-1428

Dr Shivarajpur K Ravi, MD
Specialty of Origin - Neurology
2802 Garth Rd Ste 207
Baytown, TX 77521
Office Phone: (281)428-7330
Office Fax: (281)484-3723

Dr Jack Anthony Chapman, MD
Specialty of Origin - Anesthesiology
50 E Ambassador Bend
The Woodlands, TX 77382
Office Phone: (281)793-2145

Dr Matthew Arceneaux, MD
Specialty of Origin - Anesthesiology
1923 Greenwood Oaks Dr
Houston, TX 77062-2354

Dr Marvin C Chang, MD
Specialty of Origin - Anesthesiology
6200 Savoy Dr Ste 150
Houston, TX 77036
Office Phone: (713)337-7246

Dr Barry F Bass, MD
Specialty of Origin - Anesthesiology
3906 Bratton St
Sugar Land, TX 77479-2980
Office Phone: (281)494-0755
Office Fax: (281)494-0757

Based on the list, one would think that there’s a practice group of some sort in Webster TX, but off hand, I couldn't get any online information on either of the doctors who shared an address in Webster. And I looked at the neurologists listed with pain certifications, and frankly nothing I saw particularly excited me there. That and the focus of pain program at the big show in town, the MD Anderson Cancer Center is clearly cancer pain, while nothing I’ve seen on the sites of either Baylor or Methodist Hospital really inspires me that they’re cutting edge.

Frankly, checking out the website of Jack Anthony Chapman, MD in The Woodlands led me to believe that if what you need right now is to start treatment in the next couple of weeks with some lumbar sympathetic blocks, coordinated with physical therapy, he could probably arrange it as quickly as anyone. (UNLESS OF COURSE, HE'S THE GUY WITH THE SPINAL CORD STIMULATOR HANGING FROM HIS BELT.) :eek: Even if – for the sake of argument – it’s being done prophylactically, I would plead with you to get a solid series of LSB’s ASAP and explore at the same time the initiation of bisphosphonate treatment, the sooner the better. (I’ve been on Zometa for years, which has, as its great advantage, the fact it’s quite concentrated, on account of which a full dose can be infused in 15 minutes.)

And in that regard, based at least on my experience, I would STRONGLY recommend that your PT be done – if at all possible – by a therapist with the relatively new, 4-year, post-graduate Doctor of Physical Therapy (DPT) degree. Their academic training includes cadaver studies and their knowledge of neuro-anatomy is unparalleled: while most of the PT’s out there are convinced in their heart-of –hearts that all pain is physiological in origin and what you need is “strength training,” which is the one thing that anyone with suspected CRPS DOES NOT NEED!!! “Mobilization” is more like it.

I hope some of this is useful.

Mike

Mike

Thanks again for your info. I'm going to research those doctors more before my appointment with my primary care doctor on Wednesday for the referral. I did a search also but in a smaller radius, and some of those came up in my results. I'm not sure why, maybe I did something wrong but none of those showed as having their certification when I used the public database you mentioned earlier. There were only these three that appeared to have it:

Mann, Chandler Robert, MD
Pain Management
504 Medical Center Blvd.
Conroe, TX 77304
(281) 540-0685


Trahan, Leonard A., MD
Pain Management
504 Medical Center Blvd.
Conroe, TX 77304
(281) 540-0685


Bishai, Emad M., MD
Pain Management
508 Medical Center Blvd.
Suite 213
Conroe, TX 77304
(936) 539-8155


I'm definitely going to check into your list more. Just my luck, Dr. Chapman doesn't seem to be in our network. Am I wrong in thinking these three are worth considering further? Also you mentioned that the last thing anyone with CRPS needs is strength training. As I mentioned earlier, before the surgery I was very active and did weight training at least 4-5 times a week. I havent done anything in the last four months, but I was kind of thinking that I needed to based on my surgeon. He said the nerve is like a "sleeping giant" and the more I use it the faster it will get back to normal. That was before he suspected CRPS. Is that not what I should be doing? I know all the other exercises I do for other parts of my body don't matter, but I was wondering if I actually did more focused movements on my right calf and foot if it might help "wake up" the nerve, as my surgeon said. I can barely raise my toes on that foot. If I try to raise my big toe on that foot, I can only raise it about 1/2 inch at the most. I just don't want to make things worse if that's not what I should be doing.

Some docs are really quick on the draw pertaining to these SCS. Be careful. Everything I've read about SCS and RSD is very mixed and pretty much a temporary fix while lining the pockets of a few at your expense. I believe Mike once provided a link stating that SCS were never meant for those with RSD in the first place (in so many words, (correct me if I'm wrong Mike.) To me, the big push for SCS seems to be an easy-out for those doctors wanting to avoid narcotics and the DEA.

Rich -

You're definitely not wrong in wanting to check out Drs. Mann and Trahan, their omission just reflect my insufficient knowledge of the geography of SE Texas, even if I took the time to run The Woodlands on Google Maps! But what's odd is that even when just I ran an unrestricted search of all ABPM certified doc in the state of Texas, Dr. Bishai didn't come up among the 147 listed as of half an hour ago, at least for me. Go figure. (But again, I would be careful with someone whose training was in Physical Medicine, at least in treating CRPS).

And as far as your comments on movement are concerned, that's precisely where a DPT should come in. Got to run . . . take care.

Mike

Hi Rich,

I am replying as the spouse of a man with CRPS, currently in remission. He cut the median and radial nerves in his hand with his table saw in Aug. '09. He was diagnosed right away and treated with gabapentin, nerve blocks and physical therapy. While neither he nor I can say exactly what put him in remission, he would tell you that the exercises he learned in physical therapy were probably key. He went to PT three times a week and also did all the exercises at home for an hour and a half, every evening, without fail. Progress was very slow, sometimes seemingly nonexistant for days and weeks on end, and he was often discouraged. But he is stubborn and never skipped a single session.

You clearly have a lot of self-discipline and exercise is something you can do that you can control at a time when it seems like you have no control.

Best of luck and please keep us posted. We're all sending good thoughts your way.

Hello Rich
 

Glad you found Neuro Talk. You have every right to be scared about RSD. However there are things that can help. Not all RSD spreads.
I have a further suggestion. There is a kind of doctor called a physiatrist. They are pain specialists AND another field of medicine that deals with the patient on a cellular level. My physiatrist got me on suppliments, B12 shots. I have PN, but they were not sure it was not RSD. I have not gotten any worse, and the pain levels seem to be gradually lowering. I do hope you can get help, as I know the condition is very painful. The military has engaged in infusions with Ketamine that have some good results. Where in the country they are doing this I am not sure. Someone on NT may know. I wish you all the best. ginnie

FMichael

The comment you quoted was supposed to be faintly humerous, not to be taken as seriously as you did. I am quite sure that if it is possible to get the drug infusions you mentioned in the short timescales needed then it is worth RichS taking advice on that from his physicians.

I can't make any comment on the abstract you were kind enough to post - only to caution that it was a study done in patients with specific fracture types (which RichS doesnt have) rather than general CRPS patients. It is just a personal 'rule' but I never accept an abstract at face value - it's essential to see the whole study write up to check the quality of the methodology and other details that are not included in the abstract. More often than i'd like, I've found abstracts to be rather misleading once I've reviewed the write-up of a full paper. If you have had the opportunity to have already read the whole paper then, of course, you have an advantage over me in that regard.

All I was trying to get across here is that RichS has only just had major spinal surgery and has developed symptoms that flow down the path of a major nerve. This doesn't fit the normal initiation of CRPS since, from his account, there is no trauma to a peripheral limb with initially localised symptoms. If the nerve problems are stemming from a problem with that spinal surgery, it is essential to get that thoroughly checked out because of the risk of further, even more serious problems. Ignoring that and focusing only on a diagnosis of CRPS could result in missing a more serious future problem. I'm not suggesting for a minute that treatment options for CRPS should not be pursued, only that both possibilities should be looked at in tandem.

Hope that clarifies. I don't think we are in disagreement.

L5S1 repair in 2003 RSD in 2008
 

There is already a lot of good information being exchanged here, so I'll keep it short. I had the surgery for L5S1 in 2004, which did repair the damage around my disk. I was diagnosed with RSD in 2010. 6 years. In hindsight, I now recognize many of the symptoms of RSD. I had never heard of RSD until the diagnosis of Type II Stage 3 ... the almost to late stage. Among the many symptoms and types of pain: Yes, socks are impossible, bed sheets too, and the edge of your pants rubbing the tops of your feet etc. Anything.

From this forum and likely other sources, you know what it is and how terrible it can be. Perhaps you don't have RSD. Great, but time will tell. I wouldn't wait to get help from a qualified medical doctor (neurologist) who has the credentials and expertise to treat patients with RSD. I would do it now. Early treatment is crucial. If necessary, the neuro will send you to a pain management doc and physical therapist.

After waiting at least a month I was finally able to get in with a Pain Management doctor. I did lots of research and he appears to be very familiar with RSD. Since my last visit to the forum my foot seems to have gotten just a very small amount better. The color is still bright red, but the swelling has gone down just the smallest amount. The bed sheets don't bother me anymore, and really I can tolerate most thing touching it. As neurochick mentioned before, he said its very possible it's not RSD. His plan of treatment is two rounds of cortisone shots to the S1 nerve. If that doesn't work he will do two rounds of cortisone in the sympathetic nerve. That's all fine to that point. What I'm concerned about is after that point, he went straight to doing the implant. Hopefully It won't get to that point. Isn't that option a little too soon after trying the shots? Seems like I read somewhere to avoid an implant at all cost?