United Brachial Plexus Network, Inc.

Did you have this done since your post? Pro's con's? Wha was your experience?

Texas Robin, pleas reply
you said your son got some relief, but not worth the trouble, can you be more specific about what kind of trouble. my daughter is getting ready to try it. was the procdure painfull. and what else should we know??

Shay

Kain,
Hi. My name is Linda. I have been struggling with RSD, for 3 years now. I also have had a spinal cord stimulator put in. I wouldn't or couldn't live without it. I'm not saying it has completely taken the pain away, but it has made my life better. It has help cover about 40% of my pain, and made it more tolerable. I'm not going to lie to you, I have had some complications with it, but it was worth it. If you need someone to talk to about it, you can reply back. I feel you must be at the end of your rope, before you consider this option.

MY NAME ALSO IS LINDA. I WAS DIAGNOSED WITH RSD AFTER A DRUNK DRIVER RAMMED INTO THE BACK OF MY VEHICLE APRIL 2005. I WENT THROUGH THE SHOTS, BLOCKS, DRUGS, PATCHES, TRIAL STIMULATOR, AND FINALLY THE PERMANANT SCS IMPLANT IN NOVEMBER. EXCEPT FOR THE 3 YEAR PART, I THOUGHT I WAS READING MY OWN THOUGHTS KNOWING I NEVER POSTED HERE. I WAS AT THAT END OF THE ROPE. I'VE HAD TO HAVE SEVERAL ADJUSTMENTS MADE BY THE PROGRAMMER, BUT LUCKILY I HAVE A GUY WHO WON'T GIVE UP TRYING TO GET ME AS COMFORTABLE AS POSSIBLE AND A WONDERFUL GROUP OF DOCTORS WHO FEEL THE SAME. AS FAR AS COMPLICATIONS, I HAVEN'T HAD BUT TWO MAIN COMPLAINTS:

I HAVE ALOT OF ROOM IN MY SPINAL CORD AREA AND THE JUNCTION, WHERE THE WIRES GO INTO YOUR SPINE, IS ABLE TO MOVE AROUND SOMETIMES. I DON'T KNOW HOW I DO IT, BUT I CAN MOVE A CERTAIN WAY AND IT WILL STICK OUT A LITTLE CAUSING DISCOMFORT. I'M TOLD I'M A VERY POSITIONAL PERSON; SO IT ALSO HAS SOME TROUBLE BECAUSE OF THE SCAR TISSUE IN THAT AREA.

THE BATTERY:
SOMETIMES I CAN LAY WRONG AND CAUSE DISCOMFORT IN THE BATTERY IMPLANT AREA, MY BUTTOCKS. (I KNOW WHAT YOU'RE THINKING: A REAL PAIN IN THE $$$, AND YES YOU ARE RIGHT). ALSO, BECAUSE I USE ALOT OF ENERGY (MY PROGRAMMER TOLD ME 75% OF THE PEOPLE HE SEES COULD NOT STAND THE POWER HE HAS TO PUT THROUGH ME FOR ME TO GET RELIEF) I HAVE TO "CHARGE" MYSELF MORE OFTEN THAN MOST. HE HAS BEEN PLAYING WITH COMBINATIONS OF THE IMPULSE AND AREA BY CHANGING THE FREQUENCY.
I HAVE HAD TO MAKE MANY DAY-TO-DAY CHANGES IN MY LIFE TO ADJUST LIVING WITH IT; BUT IN THE LONG RUN IT WAS WORTH IT. I STILL AM IN THE PROCESS OF FILING TOTAL PERMANANT DISABILTY, BUT AT LEAST I AM ABLE TO LIVE A LITTLE MORE THAN I WAS WHILE I WAS LAYING THE BED 24/7, DOPED UP ON MEDS WHILE MY WORLD WENT ON WITHOUT ME. I ACTUALLY HAVE BEEN ABLE TO RIDE ON THE BACK OF MY HUSBAND'S HARLEY ROAD KING (WITH PLUSH SEAT AND BACKREST),ONCE. MAYBE WITH A FEW ADJUSTMENTS AND MORE BETTER DAYS, I CAN DO IT AGAIN, OR RIDE MY OWN.
SORRY THIS WAS SO LONG. GOOD LUCK.

I too Karin, trying to find someone with scs too. I have all kinds of treatments for 11 yrs, and medications do not help any more. It sounds like a tens unit they implant in your spine. So if you find some one please let me know. Good luck to you.
MJ

Hi Linda,
I read what you said about the scs you had implated, if you don't mine telling me was it your lower lumbar that was giving you pain. I have been in pain for 11 yrs and have tried injections nerve blocks and had a spinal and neck fusion. This would be my last resort but if it feels like a tens unit I really don't know what to do. Please give me your advice how it has help you.
Good luck to you,
MJ

I recieved a SCS for Brachial Plexus related pain in 1991; I had it taken out again in 1992. The generator implanted in my stomach region was showing through the skin after the incision scar split from too little fat layer and backpacking in America. It was no loss.

At that time, in my neck of the woods, this procedure had only been performed for lumbar pain with some success. Like most of you blokes it was a 'Last Chance Saloon" option for me. Great theory but fairly useless.

In my opinion, unless the technology and pain control principles of the SCS have radically changed since then, there are better ways to spend your money. I am speaking only for Brachial Plexus though. I am led to believe SCS therapy for lower back and leg pain has been used with success for many years.

I am only knew to this site and it seems mainly for Yanks but Congratulations on you blokes asking the questions and getting this info out there.

Regards and best wishes, Greg Kimmins, Queensland Australia.

Kimmo,

The amount of research and development that has gone into spinal cord stimulation since 1992 is HUGE. The devices have changed significantly, there are more treatment options and programming has improved. 14 years is a *lot* of time... SCS was still pretty new in 1992.

Kate

Kate, Thanks for your info. I've sort of kept touch with what's going on through my long term specialist as I have a passing interest. Like SCS I've also moved on a lot since 1992 and have developed management strategies thar work best for me but are probably not suited to a fellow BPI patient..It's whatever works best for the individual based on the information, support and access available at the time.

On another note,out of curiousity has anyone had any experience with Deep Brain Stimulation a la Parkinsons treatment? I've been watching the research on that and there seems to be some promise. I'm not as Net savvy as you younger blokes so has anyone seen any research discrediting it?

Regards and again it's great to find this site and the level of info exchange occurring. Kimmo

Hi everyone

I am having a scs put in. After reading all the postings I am now very scared to have this done. I have read 1 they move around you and then they do not work. 2 They shock you. 3 you hurt form where it sits. Does everyone have the generator in the front? b/c they are talking about keeping mine in my back. There are a lot of diff. reasons people are having them put in. Do any of you have back pain and leg pain from a surg. gone bad? Has anyone gone back to work after having this done, from back pain?Thank you to anyone that may help me.

Hi
I had a TBPI in 1983 and lived with the pain for 9 agonizing years until I had a DREZ lesion (Dorsal Root Entry Zone)done in 1992 after which I was pain free for 15 years. The pain is now back and my Dr is going to do a 2nd DREZ. I can testify from my own experience that it is worth having it done. See http://www.neurosurgery.co.za/pain.html for more info and the procedure.