hi and welcome sorry to have to meet this way but welcome !!!!
i wouldnt do the sympathectomy this really isnt done anymore. i would be careful with the SCS as this isnt for anyone. i have had rsd for 11 yrs and its full body and internal. i had a pump put in 5 yrs ago and this has helped me a great deal. like you blocks dont work very well. but SCS and pumps should be the last option in my opioin .

your question about the right doctors i have found that Pain managment doctors are the best they have the knowledge most of the time but there is a wide range of drs that can treat us. like ada said her PCP treats her


carrie

My husband is awaiting approval from w/c to recieve the scs trial. he drives for a living and will not be able to keep his cdl and drive if he has to stay on the pain meds. The blocks worked for a few hours each time. He's on dilaudid for pain right now. The pain is too bad for PT still. Our lawyer has told us to expect a fight with w/c, if they deny it, we will continue to fight it, but might proceed with our private insurance, For us its a fight against time as his arm is already showing distrophic signs and again, could be the difference of keeping the job he loves or totally turning his life upside down. If it doesn't work we will deal with that, but need to find out if the scs will be the answer.

We have been to many doctors but now he only sees his Psych and Pain managment doctor. The pm dr is wonderful and been the most helpful and informative with regards to crps/rsd.

I wish you the best.

One of my doctors said the effectiveness of sympathectomies and amputations are about the same; 10% get total remission. The rest are rarely helped much and a large number have the RSD come back "angry". Get a second opinion from someone who is well versed in this.

It's said the only pain worse than RSD pain is phantom pain from an amputated limb.

i had a SCS put in about a year after being diagnosed with RSD... the trial worked great for me, however the perminant one caused my RSD to spread and then failed to give me the pain relief afterward. Needless to say I had it removed about a year and a half after having it implanted.

If you scroll through a couple pages of topics on here there are some surveys I posted from a bunch of different people with RSD that i took for information for a paper I was writing (That as well is posted on here some where). But one of the questions on there asks about the treatments/medications they've tried. That may help you out some.

Hi New and Lost Jennelle,
Welcome to Neurotalk and a large family of compassionate, informtive, and friendly group. I have learned so much here, and hopefully have encouraged others. I know I don't feel misunderstood or alone. Most of us had no idea what RSD was or how our life was going to change. Sure, we all miss our good health, but have learned many ways to cope with disabilities and pain. I agree with all the above comments regarding SCS and Sympath.
I have been helped by physical therapy and massage therapy. I had frozen shoulder following surgery (really rsd, but wasn't dianosed for 4 years) Started therapy right away to get use of my left arm. took 100 massage therapies followed by 100 p.t. I paid for the mass. therapy, felt it would loosen up and help speed up recovery of range of motion. I never regret that. I have full use of arm. Then a few months of relief followed by sudden frozen shoulder in right arm. (They told me that might happen) More therapy.
Full use of right arm. Then left hand frozen from injury while water skiing. Wrong diagnosis. Changed Drs. and diagnosed with RSD in different state. Started therapy in hand and got partial use. It's permanently partially paralyzed. Have full body now. Both feet started to turn upwards, toes. Dr. had me start water therapy and in a few months, my toes were touching he ground again. My Dr. is a neurologist, psychiatrist, and pharmacologist, so he basically manages my pain and rsd.I've been seeing him for 5 years and it was this smart Dr. that told me my rsd started 13 years ago following my benign breast surgery. The next day my arm swelled and shoulder froze up. Not even the Rehab Dr. and physical therapists recognized the rsd. We desparetly need rsd education in this country. Every state needs new laws passed. I attended the national rsd annual meeting here in Scottsdale last week. There are 50,000 new cases of RSD being diagnosed every year now!! We can't afford for people to have 4 years pass before being properly diagnosed. More and more children and teenagers are getting it. If you go for water therapy, the water needs to be at least 86 degrees. Cold water is not good for us or ice.
I'll pm you an evening when I'm feeling a little better and share more information that has helped a lot of us. At the top of the page is a 4 page list of suggestions that Mom in Pain has started with a lot of good suggestions from different ones that has helped us deal. You can also read the introductions to learn more about each one of us. It takes time, but the more you can read, the more you can learn what helps us and avoid things that make our condition worse. I'll post some information about the annual conference soon.
Please take care, loretta

Dear Loretta

I have been keeping an eye on the RSDSA website for any information that may have come out of the Scottsdate conference - especially new treatments recommendations. Hopefully it will be published soon.

Sandy