CRPS/RSD MDs,Specialists in the PNW ?
 

I am in Alaska and was diagnosed with CRPS/RSD in February 2012. I refuse to have Stellate injections or an SCS due to lack of effectiveness and long term complications, and they seem to be the only options being pushed by the MDs here.

I have read hundreds of pages on research, treatment, diagnosis, etc., and I feel I know more than the MDs treating me. Remember this is Alaska so the "pool" of medical professionals is slim compared to the majority of the country.

My question is about MDs or clinics in the PNW that understand and treat RSD effectively (as can be these days) without pushing invasive and damaging treatments, does anyone have any contacts that may be of help to me ?

AK,

First line of treatment are blocks and the sooner they are done the better the chance for recovery.

Something you can do at home is TDCS. As far as dr.'s you may want to try RSDSA.org

I have read a few hundred pages of info on that site alone and the information there is a large part of the reason I choose to avoid injections.
One major consideration, personaly, is that the affected site is my left upper extremity and left hand. An infection, poorly inserted needle, etc. could potentialy leave me paralyzed from the neck down. I refuse to put myself in that position, at this time, for the risks far outway the benefits. Pain is far more tolerable than paralysis in my book.

Thank you for the reply.

Glad to see you are doing research before jumping into...or being pushed into a treatment you are not sure of. My RSD is left hand/wrist and now arm. The rest of the arm was not involved before but after the stellate ganglion block guess what??? spread and now whole arm and shoulder. I put the block off since mid July....and finally desperate and went for it and I am sorry I did. I had no relief from the pain, it intensified and caused a major flare up. Just thought I would give you another side of the block.
Good Luck...and continue to do research and ask questions

The odds of paralysis are very minimal. Is it worth it for temporary relief? Not in my opinion. BUT, if done early enough they can put a patient into remission, and there is no way to know if your relief will only be temporary until you go through a series of them. It is a serious medical procedure that should be done by a skilled and meticulous doc via fluoroscopy, and the patient should have a massage afterwards. Even the meds injected make a big difference. It shouldn't be treated like a block given in child birth, which only needs to be effective for hours and does not need the precision an RSD patient does.

Tens of thousands of patients have undergone SGB for RSD. It's not as if this an untried course of treatment.

The thing with RSD, is spread can happen for a variety of reasons or for no reason. You have to figure out what calms your system down asap when any abnormal pain starts. Lidoderm patches, warm baths with Epsom Salts, prednisone, massage, tens unit, additional pain meds, etc.

Once a person goes beyond the 6-12 month window, your odds of recovery fall. I've had RSD for 10+ years. There is a big difference in coping with severe pain for months as opposed to years, btw. By the time many of us are diagnosed, the window is past. Add to that, the amount of reading required, and learning how to respond to a dysfunctional body, and we're left with wishing we could go back in time with the knowledge we now posses. So please understand that's my prospective. Of course get the best care possible, but don't be so fearful of the what if's that your window closes on you.

And apparently those that start out with a cold limb/s have been found to have more severe cases.