United Brachial Plexus Network

Hello, I am going on my second year wiht left BPI. After several medications, thoracic injections and brachial plexus blocks I am left with only temporary relief. My doctor has suggested having a Spinal Cord Stimulator implanted and I was curious if anyone has experience with one, good or bad. Thank you Karin

I can tell you I have had the SCS in for over 1 year and I am still on medications and I still have a lot of pain but I am not saying that it did not help at all because I am sure it may have but I am still struggling everyday. Lots of advantages and disadvantages, Good luck

I have ust made the appointment to have a temporary spinal cord stimulator placed. My pain is from a spinal cord injury to the C-spine and the pain is in my right arm. As you know and probably experience, the pain is constant and burns so much at times that I want to cry. I cannot take pain pills, so I am living with this daily with no relief......it has been two years now and I feel that this is my last resort......
Any comments ????

I would like to hear any comments regards the SCS, I sufferd a TBPI 3.5 years ago, still not getting any improvement with the pain and recently told my arm isnt going to get any function back, so thinking about the chop
Good Luck
Mitch

Hi y'all,
My wife Carrie received a spinal cord stimulator a few years ago after a TBPI (C5-T1 avulsions) and hasn't had any luck with a reduction in pain. We were hoping for some improvement with renervation, but that hasn't happened yet. She's had it reprogrammed several times. The stimulas reaches her fingers, but it doesn't replace or reduce the pain at all. Hopefully the reason for it not working properly is because of her specific injury and not the positioning or design. I've heard some good results from the SCS's and I hope it works for you. Good luck, Dick

Chris DON'T GET THE CHOP! The technology of the future may help you. I had my BPi in Jan 96 (8+ years), I had the option of amputation and seriosly considered it. Until that was, a friend pointed out the speed of which todays technology is excelerating. So think long and hard before you do. Don't forget just because the limb has been amputated, it doesn't mean the pain will go. I don't mean to be patronizing, I just wouldn't want to see someone make a decision they may later regret. Good Luck!

Hi Kathy, I am very sorry to hear about your situation because like you I have several problems with pain, as my pain threshold is very low and I have had back problems for many many years and most of them I have been taking some serious doses of pain killers including Oxicodone and Oxicontin with the asistance of the Duragesic patches,and I do get some relief but it is only temporary.Just today as a matter of fact, my inssurance approved the installation of the Spinal Cord Stimulator, so I am very hopeful that it will help me. However, I am curious why can't you take pain meds? Is it because of the Narcotics, but if it is not the case, you should talk to your Dr. about Duragesic Patches, I am on them and they are helping some what with the pain,the medicine in them is also a narcotic called Fentanyl Transdermal, and it comes in different dosses, the lowest being 25 microns per hr.
I sure hope you get some help and if you need someone to chat with feel free to email me at r8dersfan@msn.com.
P.S. believe it or not I am only 32 years old but I have a back of a 80 year old man.

I have just gone thru the trial spinal cord stimulatorand and found that to be a very good help I can say my pain level went from 8 down to a 5 I have had rsd for ten years and this has been the best treatment so far....my rsd is located in my entire left side...when my doc implanted the trial lead he was looking at decreasing just the left arm and shoulder area...but wow I actually got coverage on my whole left side..so for me this has finally been the first thing in ten years that has given me hope at all...just yesterday they pulled the trial stimulator and are in process of scheduling the permnant placement of the unit...I have been wanting to talk with someone about the surgery itself..I know my doc has said it is not an easy one so I really would love to talk to someone that has gone thru it please feel free to contact me at ldybluesilk@yahoo.com

> I have just gone thru the trial spinal cord
> stimulatorand and found that to be a very good help I
> can say my pain level went from 8 down to a 5 I have
> had rsd for ten years and this has been the best
> treatment so far....my rsd is located in my entire
> left side...when my doc implanted the trial lead he
> was looking at decreasing just the left arm and
> shoulder area...but wow I actually got coverage on my
> whole left side..so for me this has finally been the
> first thing in ten years that has given me hope at
> all...just yesterday they pulled the trial stimulator
> and are in process of scheduling the permnant
> placement of the unit...I have been wanting to talk
> with someone about the surgery itself..I know my doc
> has said it is not an easy one so I really would love
> to talk to someone that has gone thru it please
> feel free to contact me at ldybluesilk@yahoo.com

I am having the trial stimulator procedure done on 11/8/05.I am very nervous.I am also looking to find someone who has gone thru the permanent placement of the unit. Feel free to contact me.jmbacct@hotmail.com

Dear Julie,
I had my spinal cord stimulator implanted on 11/2/05. It helped with the pain in my left leg, both my knee caps, 85% of my back, but came back worse in my right leg since the trial. I am now having an epidural only in my right leg on the L-4, L-5 nerve root on 11/17 to see if I get any relief. The Dr. is talking about pulling the whole thing out, which I don't want to do. It makes no sense to pull it out if the rest of it works on me. He said the next step is pain meds for chronic pain -- methedone. Is this what happens to a person who goes in for back surgery (I have had 3) and they fail to work? Do we end taking and doing all of these horrible things to get better? How did your implant go? Did it work? I hope you feel better. I am at claudlandy@aol.com