United Brachial Plexus Network, Inc.

I'm scheduled to have a two week trial run w/a Spinal Cord Stimulator during the 1st week of May.
If all goes well, then they will fully implant the device.

I'll keep you all posted.

Christopher

PS maybe I can get my own video of the procedure for the record books


(video portion of story at link below)
http://www.courierpress.com/news/2008/m ... on-offers/

Sticking it to the pain
Nerve stimulation offers help against neuropathy

By Libby Keeling (Contact)
Sunday, March 30, 2008

Thomas D. Sparrow exudes the quiet, easy, no-mountain-is-too-high confidence of a long-time farmer steeped in years of self-reliance.

Being sidelined by chronic pain has been difficult — frustrating, irritating, depressing — for the 61-year-old resident of Ridgway, Ill.

"The hardest thing was when I had to quit work, when I was used to getting up and going all the time," said Sparrow, who once helped manage a 9,000-acre farm.

MORE...

Chris, I had that done, but did not like the way it felt inside me. I hope it goes well for you.

Cody

Cody,
Thanks for your reply. Any more insights about it. What didn't you like about it inside you? The wires going into your neck? The stimulator device under your skin? The wires going to the device? or the over all feeling that it generates in your spine? That was worse than the pain? Where did you have the device placed? How long after injury did you try it out? How long did you try it out for? Did it work at all?

I'm looking into having it place around my right chest area and a gel chest implant placed over it, since my right pectoral doesn't exist anymore and its all ribs and my left pectoral is pretty healthy sized.

Sorry for all the questions, but as I'm sure you understand. It's been given about a 50/50 chance of having any success, so I figured I've got to give it a go, just in case there is a small chance in might work. I'm schooling for a job that will require major concentration and 15-18 hours work days. The pain is really messing with this, so it's my one last try.

Thanks for anything you can tell me Cody!

Chris

Best of luck Christopher I know this is a huge step for you. As you can imagine we'll all be with you come May.
Peace out,
Scott

Chris, I had the trial stimulator done about a year after my first surgery. Because I am wired differently now, the doctors had trouble regulating it. I felt it in my good arm and down the leg of my bad arm. Every time I walked my with the stimulator turned on my whole leg would tremble. It really didn't help my pain, so I had them take it out early, because it was not worth it for me. I hope it works for you.

Cody

Thanks for the post Richard. It confirms what the pain specialists I've seen report. I.e. that there is not a lot of data out there regarding BPI and Spinal Cord Stimulators, and that the history of it's application is shady beyond ten years or so.

I'm still meeting with one more specialist before I take the plunge.

Christopher

The whole study is available for download if anyone else is interested. I'm reading it tonight.

http://www.painphysicianjournal.com/lin ... 11&page=81

Christopher,
Did you have SCS done? I just posted questions about this procedures prior to finding yours. My doctor just talked to me about it. I have been looking into it all weekend. I believe I am going to call him tomorrow to start the process for me to have the procedure. The more I can find out from someone that has had it the better I will feel. I would love to hear all about it. I will be glad to write you off line if you prefer.
Janelle

Janelle,
I'm still looking into it. I decided I'll have to wait for summer break from school.

I met up with a plastic surgeon a couple of days back to look into "masking" the stimulator implant with a hard silicon implant in my chest pectoral area. There is a significant disparity in muscle mass between normal and injured side. I figured, if I'm gonna get something stuffed in there, might as well try and improve the situation.

My understanding is that there is about a 50/50 chance of having any improvement at all, the improvement may not be significant, and it will never be total pain reduction. I'm fine with that. The surgeon that implants the device is a crucial factor. I would seek only the best. Most have never worked with BPIs.

IMPORTANT, most surgeons use different electrical leads for the trial vs. the permanent implant. In my opinion (from research and common sense) this is ridiculous. The surgeon has to locate the area to stimulate during surgery, and can only do this by asking you what you are feeling as the doctor pokes around through your spine stimulating this area than that area. Why remove the leads after the trial, if that is one of the most crucial elements to successfully masking the pain? Ask your surgeon if they use different stimulator leads between the trial and the permanent implant, this will give you some insight into their consideration.

I'm hesitant to commit due to the possibility of lead placement readjustment, down the road. Because the electrical stimulation leads would be placed in our neck area, that area is subject to more movement than the rest of the spinal cord (the majority of these devices are placed in lower spine areas). I'm an active and rigorous individual, and don't think I'll be slowing down for another 15+ years. I've read of people having to get their leads re-implanted because the leads come loose from the original placement. The question is, is how are the leads anchored in place? I understand some surgeons rely on scar tissue to be adequate. This is something I'm still looking into, and will need to feel secure about before moving forward.


Here is a new implant available. There are many options out there.
http://medgadget.com/archives/2008/04/w ... urope.html
http://www.sjm.com/devices/device.aspx? ... us&type=43


Good Luck,
Christopher



PS - I contacted a researcher conducting clinical trails on motor cortex stimulation on different types of chronic pain. I've included their email response below. Mind you, this is a study regarding brain stimulation.



http://clinicaltrials.gov/ct2/show/NCT00462566

Hi Christopher:

Dr. Brownstone and I discussed your case, based on the information you sent in your email. He feels that a spinal cord stimulator would probably not be of benefit to you. The results of his motor cortex study won't be published for another year or so but at the moment the results are not impressive either.

Best of luck to you. Please let me know if you have any other questions.

Paula

Paula Chiasson, MSc
Program Coordinator, Division of Neurosurgery
Queen Elizabeth Health Sciences Centre
Centre for Clinical Research
5790 University Ave., Room B26
Halifax, Nova Scotia
B3H 1V7
Phone: (902) 473 7809
Fax: (902) 473 7808
Web: paula.chiasson@cdha.nshealth.ca

Thank you Christopher. I'll look into the site you included in your response. I will be contacting my surgeon as well as the Pain Management Specialist that suggested it tomorrow. Friday was the first time I heard of this procedure. My damage is from the brachial plexus down my left arm. My spine was not damaged. I have a lot more to discuss with my doctors. Thanks for the tips about the leads. Just another question to ask. My left arm has started to spasm most of the time. This is the main cause of my pain. The resting pain is bearable the spasm pain is not. The past 2 1/2 weeks have been almost non-stop spasms. This is interfering with my life and activity. If SCS can stop the pain that would be great. What I would really like is to find a way of stopping the spasms. Any and all suggestions on that front would be great.

Thanks again. I'll let you know what I decide to do.
Janelle