Neurostimulators (implanted) and TOS
 

First a quick introduction , My TOS started back in 2008 after a serious aircraft accident . Took a year to arrive at that diagnosis. Had first and second rib (conjoined) resection . pec minor release and have tried virtually every pain medicine known to mankind . I still have sporatic and totally unpredictable bouts of severe , and I mean severe , pain . Up until this I didn't even take an asprin !
Its now been suggested a try an implanted neuro stimulator as some patients apparently had successful outcomes . Has anyone here on the forum used one or know of anyone that has ?

Thanks

Hello,
Long ago a member that had both RSD & TOS got a stim implanted and it was helpful for her.

We have a SCS subforum here-
http://neurotalk.psychcentral.com/forum118.html

Many members from our whole site post on there with the latest info on stim & implantable pain control.

You could have internal scarring built up after all these years, have any of the drs or surgeons mentioned that? It is possible to clean it out, but more may come back over time..

Jo*mar ,
Thanks for the quick reply , I already did a search here and at other forums but there is little directly related to helping with TOS pain. I've been extremely fortunate to have the best physicians there are for my care at Mass General.
Each surgery and treatment HAS made a significant improvement . Looking back I realize how bad I was early on and am always thankful in the knowledge that my pain episodes will pass (eventually) .The thought of additional surgery is considered as a last resort. But I have to think of the stimulator as another surgery.
I'm leaning towards the stim as the pain does wear you down , gets so bad (for just short periods ) that I occasionally pass out. I've had a few other medical issues since the TOS , like shingles , kidney stones , samonella , and a few broken bones etc etc ......ALL OF WHICH ARE A WALK IN THE PARK compared to TOS .

Again Thanks

Here is one of beth's post from 2006 about her trial stim -
http://neurotalk.psychcentral.com/thread2249.html

If it displays for you, you can click her username for more of here post/threads..
sometimes the search option doesn't go back that many years..

Yes, I've had a Medtronic Neurostimulator for 10 years...it saved my life!! Medtronics created stimulators and I feel the very best in client care. I had no other choice and thank goodness there was this.

So glad you posted this! I was just given a DVD about the Medtronic Neurostimulator today by my pain management dr. He thinks I am a good candidate. Again, so glad to hear good things about it.:)

etlgt ,
Thanks for your insight. I have heard many neurostimulator success stories but very little about successful use with TOS . Even my surgeon (probably the best), who also thinks I should at least "trial"one , hasn't had much first hand experience with using stimulators for TOS pain relief.
N1NE

The main reason I am considering the neurostimulator is the fact that since my injury that caused the TOS i happened to have a stroke that was thought to have been brought on by blood pressure spikes ( to the point of causing syncopy) from the extreme pain.The pain center physicians do believe it will help with the pain/bp cycle. With out the pain my BP is low normal to low with a standing pulse of 50 !
Thankfully I recovered from the stroke very quickly with no lasting effects.

Curious, were you on pain meds for the extreme pain when the bp spike happened? I'm asking, because after my surgery I was on pain meds for 2 months, and my normally very low bp was suddenly high. As soon as I was off the meds(Percocet), I went back to low.

brisco71 , The use of "pain meds" and anti-depressants did raise my blood pressure but not dangerously. One neurologist had me take BP readings often during a week long period and it rose almost directly proportional to the pain level. Periods of extreme pain caused a rise to over 200. At the time I had my stroke I was off all pain meds for quite a while after experiencing a negative reaction previously .