COMENTS ON SPINAL STIMULATOR - Reflex Sympathetic Dystrophy Message Board

pooki · 05-14-2002, 06:24 PM

My husband is having a spinal stimulator put in to help his rsd pain. He has had rsd for 8 years. He would like information from people who have had this done good or bad results.

Ken333 · 05-21-2002, 05:55 AM

Hi Pookie,

One of our RSD support group memebers had a stimulator put into her hip, enclosed tpye, and 2yrs latter shes having extrame pain, more than usual.

Due to the normal extreame pain from the RSD, she didn't notice that what pain she was having was not RSD pain but pain from her body fighting off the stimulator intrusion into her body.

The results, she lost alittle more than half of her hip tissue, muscle and had to have several skin grafts.
Theres been a few others thats had simular results but not as severe.

Not trying to say all results will be the same but just becareful as the pain that RSD creates is sometimes hard to tell from pain of other problems arising.

There are no "experts" on RSD.

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KenS

Gabrel · 06-09-2002, 11:22 AM

I'm fortunate to see one of the leading doctors in RSD in the country. This based on his starting a RSD center at a major university teaching hospita, working in RSD for over 15 years, he teaches, is well published, and does continuing work in the field of RSD.

He's against spinal stimulators (SCS). That is unless no medications work (we're talking methadone, oxycontin, duragesic, morphine) do not work at all. The reasons are that too much can go wrong with the SCS. Once you have it in you, it's surgery to do anything. Infection can be a major thing. As well as finding a doctor to work with you if you ever move.

Just my .02.

LivingWithRSD · 06-12-2002, 06:46 PM

Hi Pookie, I was diagnosed with RSD in 1990, with symptoms going back to 1985. I had a trial stimulator implanted somewhere around 1994. I was at the hospital (where my doctor was located) every single day having them adjust it. After 10 days, I begged the doctor to remove the stimulator. I was in much more pain with the stimulator than I was without it. I just cannot imagine how in the world the stimulator is suppose to work with RSD considering I cannot even handle the vibration of pushing a grocery cart!
That is my experience and my opinion. I will also say this:
Your husband has to try for himself. I do know of people who have had the stimulator and have been very happy with the result. This is one of the things with RSD, even though we all suffer from the 'same' disease' we all respond differently to treatments. Your husband has to make up his own mind and not go on others experiences.
Good luck!

nikkilee · 06-25-2002, 04:58 PM

Hi There, I am new to this board but have been living with full body involvement for 3 years following a tumor on my Sciatic nerve. I had 2 types of stimulators put in and unfortunately neither one worked well for me, not to mention the pain in my back from the surgery was horrible. It appears my epidural space is too large and that the leads were actually hitting my spine sending shocks around my ribcage and back. I hope that you have better luck with yours. Let me know. Like they say, everyone is different.

Also, I would be interested to find out who that lead doctor in RSD is located. I would love to present my case study to him/her. Thank you in advance, and May the Lord Bless you, Nikkilee