Hi Rich!!

I wanted to welcome you to the forum. I am SO sorry about your difficult road with RSD. It sounds like you have already had most of the possible medical treatments for it. I have never heard of the DBS for RSD but am VERY curious to hear what other members have experienced or heard regarding it. Where is your RSD located??? Have any of the surgeries caused it to spread???

I wish you the best of luck with your treatment. I hope and pray that you find good relief when you are able to turn it on next week!! Please keep us posted on how you are doing. Welcome again to our little family. You will meet many caring, supportive, compassionate people here!! I hope to talk to you soon!!

rich
my neurosurgeon is a leading doc for dbs and he was goin to do dbs on me 5 yrs ago i have had rsd for 11 yrs i am not a canadate for scs had sepsis in spine 9 yrs ago but the reason we didnt do dbs was he thought that it wouldnt cover enough of a space to keep my pain low enough so i had the pump. 5yrs ago for me my pain stays about 7-8 on good days i have fentnyl in my pump instead of morphine (allergic). my grandmother has dbs for essential tremors she had it out in a year ago. but my neuro siad that they did dbs for rsd 10-15 yrs ago

-carrie

its funny that you are from TN thats where i had to go to get the surgery,i live in south florida. I would say if you have no other avenue for pain control i would try it (not an easy surgery) only as a last result until they get better feedback from people lik me. The funny thing is that the pain area is just to the rear and a little lower than the tremor part of the brain

momin my rsd started in my left arm after my pointer finger was amputated in a surgery, it spread to the right arm after a small injury. i now have rsd from my naval to my shoulders and all in between and my back. My DBS is turned on and working but it is on low it is doing an ok job i cant wait to turn it up. none of my surgeries have affected my rsd (knock on wood) when i had the DBS before it lowered my pain by 50% i got back to work and my family life became as it was before RSd, now that i have bi-lateral electrods im hoping for the same or even better.ill keep the reports coming as my system is turned up. thanks for the wishes

Rich,
I am so glad you will be able to turn it up soon, and I hope and pray it will give you very good pain relief!! I am curious, did you have any sympathetic nerve blocks before, during, or after your surgeries to keep your RSD from spreading??? or did you just knock on wood and that did the trick??? Many of us have heard here the importance of having the preventative blocks to prepare for surgery. I am VERY glad either way that it did not spread in you. You poor dear, you have enough pain as it is. Thanks for the update and for writing back!! Keep us posted on how you're doing!!! We all wish you the best!!

rich
did you go to vanderbilt?> that is where my pain doc is and neuroguy that does dbs. he is the best neurosurgeon that i have ever seen. i wish the dbs would of been an option. he thought that since my rsd is so bad that it wouldnt be enough to have the surgery and go thro all that pain assocaited with. so did you stay here in nashville? hope you liked our city

-carrie

Carrie
Yes i did go to vanderbilt Dr Neimat was my surgeon would highly recommend him listens to the patient and really cares about what you need and can stand. Im going to turn my systems up to see how much my brain can handle,try very hard not to upset or ill have to wait a little longer. The day after my surgery i was able to be driven home then i went back to work (construction Superintendent) 5 days later.

i havent meet him but the whole neuro staff and pain mangament docs are the same way. dr konrad is who i see he is great i will tell you that. he is the one that is tall and glasses
im glad that this is working for you and glad you are having less pain

carrie