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unknown rsd treatment
Hello my name is Rich
I have had RSD for15+ years i started like most on by taking meds then blocks and on to a morphine pump, the one thing that worked well for me was the scs because of problems had to be removed (no longer an option for me) left with little choice and alot of pain and swelling my Dr offered Deep Brain Stimulator (not FDA approved) i had it for about 8 years until a wire on my skull broke. last week i had Bi-lateral DBS installed,it took 7.5 hours which for most of you are wide awake it is working but i have to wait to turn it up (about 2 weeks) Has anybody else had DBS for RSD? |
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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 |
Hi Rich,
I haven't had the Deep Brain Stimulation (DBS) however my Doctors have said that it might be worthwhile as a last resort as I have very bad myoclonic spasms in my RSD leg! One of my friends, who has severe RSD and posts on here sometimes (Rosie) has also said that her Doctor has recommended it however it could cause a potential spread or make her RSD a lot worse because of how severe she has it! I would look into the treatment IF nothing else worked however, I think it is VERY risky and it is something that you would HAVE to do a lot of research into before agreeing to have the operation and weight up the possible benefits and risks as I am sure you have done! How well does the DBS work for you???? I hope you are getting some real good results even though it is still early days and wish you the best of luck!! |
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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 |
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Ali the surgery is a hard 1 but for me and getting my life back it was my last choice as i dont like drugs or what they to to me. Research is the KEY the best places to look are DR's that work with tremor and DBS i can say it works i have had it for 8+ years i would never have gone through the surgery again unles it helped.Saying that i would leave it as a last last resort,....................if anybody has this installed be ready for a headache that lasts a month and is the worst you will ever have, then it goes and all is good |
Hello Rich
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Welcome and thanks for the information. I am a full body RSD/CRPS sufferer for 20 years in July. I am treating with HBOT. I, for one will be really interested in your progress. Thanks for dropping in and informing us! I hope things go extremely well for you this time around. Rich... .that is what my mom calls my dearly :Heart: beloved father, Richard. Again, welcome. Di |
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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 |
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