Thread: Expert?
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Old 01-30-2015, 01:29 AM
LIT LOVE LIT LOVE is offline
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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
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Well, that depends on what you're in need of and how confident you are about your depth of knowledge about CRPS. It took me a few years to recognize the signs of doctors that claim VAST CRPS experience and are quite honestly CLUELESS. Considering the small window of time to have the best shot at remission, it's best to err on the side of caution when choosing a doc, IMO. If you or a family member were diagnosed with cancer, wouldn't you travel to the best doc you could find? I think a diagnosis of CRPS should be treated just as seriously.

(I'm guilty of advising people to seek out an "expert" and that is insufficient of course. The newly diagnosed should read as much as possible about CRPS--some docs discourage this... They should get the best care possible and this might include farther travel time than they'd prefer. They should check the reviews of other CRPS patients. They should check out their closest CRPS support group and ask about local docs. Some of the CRPS websites have lists of experienced docs as well.)

I really respect my current doc, and he seems very invested in trying to put CRPS patients into remission. I travel 90 miles one way to see him which is a logistical nightmare every month. I trust him to perform stellate ganglion blocks, and ketamine infusions, but he hasn't convinced me that a spinal cord stimulator won't cause spread and if suggested amputation, I'd be seeking a second opinion from one of the big dogs on the east coast.

There is a doc in SoCal that has very impressive credentials, but is 1)a jerk 2)thinks he knows more than he does 3)isn't particularly honest, so even though he publishes and lectures at conferences, etc. if you read reviews from his patients you quickly find out not to trust this guy because he's simply trying to make BIG money off of expensive programs and procedures.

If you live in a place that isn't terribly populated, the reality is most docs are just not going to have seen very many CRPS patients. I had one doc that I respected that had at most a half dozen CRPS patients at any given time, but he kept up with the current research better than the docs in Socal I would call "experts" in the field. If I experienced something he was unfamiliar with, he'd go research it! He obviously directed his staff to schedule me before lunch or as the last patient of the day to give me as much time as I needed. I would refer patients to him in a flat second.

The doc in my previous county (population 840,000) that is probably the most experienced with CRPS patients works at a pain clinic. He does stellate ganglion blocks in house that are substandard to what I've had done by two other doctors. He also performed a radio frequency neurotomy that exacerbated the severity of my hypersensitivity permanently and refused to admit that the procedure made me worse. He might be the local "expert" but although I really liked him as a person, I would never recommend him.

What I have found is that docs in smaller communities will not disagree with their local colleagues. It was a waste of time to seek a second opinion locally. When I've gone to docs that were out of the area they didn't rubber stamp the first opinion, so at the very least get an "expert" second opinion for intrusive procedures.

(I'm sorry this might be scattered, but it's the best I can do tonight.)
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