United Brachial Plexus Network, Inc.

hello all! Jason hasn't had the implant done yet. we are still waiting for the insurance to approve it. but is looks promising. I have a video tape so if anyone wants to take a look at it i'll send it to you. I'll will need to have it back though so we can share it with others. Just let me know. Right now it's in Delaware. I don't really know that much about it except there are two types. One is worn outside the body and the other implanted in the abdomen or butt. They are both battery powered and i think the battery lasts about 10 years. As far as drawbacks go, the internal one can be uncomfortal if in the abdomen. The one in the butt just feels hard through the skin. With the external one you have a little pack you carry around your waist. You cann't go scubba diving with them either. That's really all I know. It sounds promising though. I will keep you all updated.

Amy and Jason

Here's a link to a Medtronic pump. This particular one is used to pump in medication to reduce spasticity caused by cerebral palsy. What Jason will use might be the same pump with the exception of where the catheter is placed- as Amy reported..in the neck area (rather than the lower spine for a CP patient).

http://www.medtronic.com/neuro/spastici ... romed.html

Therapists that work with CP children might have experience with this pump and you could probably talk with the parents to get an idea of what the insertion was like and if there are any complications... or pros and cons.

Also - Leslie McKibben PT (Melbourne Florida) has experience with children with CP using this pump. You may want to contact her for her take on this lmpt@worldnet.att.net. This pump was included in the TES course she gave in Philly recently.

anyway - hope this is helpful,
francine

Hi Amy, nice to see you posting again. Sorry about Jason's continuing pain :0( I know his surgery was not long ago, most people report the pain gets much better when the grafts 'take', bpi surgeons are now doing the grafts even in cases where they know there is not likely to be any functional recovery just to ease the pain. Once the nerves reconnect he should start getting some relief. These implants are not usually recommended until every other avenue has been explored, but obviously everyones case is different. What does your bpi specialist say about the implant? Is he happy for you to go ahead with this while the graft is still in the healing process? If you get pain relief, how will you know if it's due to the grafts or the implant?? The pain felt by tbpi is not like 'usual' pain, in the case of avulsions it's an injury to the central nervous system, often non specialist pain clinics have no real idea of how to treat this pain and any treatment should really be overseen by your specialist.
Since you last posted some of us have started a new tbpi website and there is an article about pain control etc in the medical section. It's still very much under construction (everyone involved has only one usable hand-these things take time!) but there are message boards and I know at least one of our posters has had the implants. Maybe it might be worth posting there for some input from people with experience in this treatment. Here's the URL http://tbpiukgroup.homestead.com/Index_1.html let us know how Jason gets on!

Dr. Nath and ever other specialist said that this surgery wouldn't do anything for the pain. It is strictly to attempt to regain some movement. They all tell us the pain may not ever go away. We are coming up on the 1 year anniversery and I don't think it has subsided at all.

As far as the meditronic stimulator, it does not pump medication. It blocks pain signals with electrical stimulation, similar to the muscle stimulators. Instead of pain signals it is supposed to send tingeling feelings to the brain. Dr. Nath accutally suggested it in May. The stimulator will go in the butt with leads to the neck. Since Jason doesn't have any nerves left, nothing is growing from there so it shouldn't interupt the graft since it was from the rib cage. Who knows if it will even work. But the pain specialist, one of the few here that treat bpi's, has had success with it in the past.

We still haven't heard back from the insurance yet. But I will let you all know how the trial run goes.

Thanks all!

Amy

Hi Jason and Amy

I have all 5 major nerve roots of the brachial plexus avulsed. I had an intercostal nerve graft too, about 9 years ago, and it did stop the pain to a degree as well as giving me back elbow function. I never now get pain from my upper arm. I was told at the time, that in a good percentage of cases, with the particular grafting technique I had, the pain is also lessened noticably in the thumb and forefinger.

Obviously, everyone is different...has different surgery according to their needs, what is available etc but almost everyone I have discussed surgery with have told me that they have had a reduction in pain when the particular muscle(s) that was 'aimed' at was reinnervated. (Usually the biceps first) This takes a fairly long time...(peripheral nerves grow at a frustratingly slow rate....) nearly 9 months in my case.

I wish Jason all the best of luck with the trial run of the implant, but I have to say, neurostimulators like the Medtronic one have been around for quite a number of years, and empirical as well as anecdotal evidence does not support a good result on neuropathic pain arising from avulsed nerves.

Feel free to email me; we have a support group here in the U.K. and many years experience of living with this injury between us all...

Best wishes..

Liz B

I'm surprised none of the specialists you spoke to knew of the relief of pain following nerve grafts in tbpi, this was known about after the Second World War (altho the pain relief then was not permanent, the grafting process was not as efficient as nowadays)and many studies have since been published about it. It's no longer a theory, it's accepted medical fact, although there are many different theories about HOW the grafts ease the pain, there is no doubt that they do. I looked into this very thoroughly when researching the pain article on the tbpi website. Some tbpi patients have had nerve grafts many years post injury for the sole purpose of pain relief. If you are interested I can give you the names of the papers and their authors, who are all world renowned in the field of tbpi surgery, some were its pioneers. Without going too deeply into it, patients reported lessening of the pain at between 3 days and 3 years after the grafts, the average being 8 months. It didn't work for everyone, but then the grafts unfortunately don't work in every case. Prof. Rolfe Birch (who has specialised in tbpi since 1980) now states that nerve grafts are increasingly the most important treatment of all for pain relief. I also found reports that the pain actually got worse in some cases, the theory there was that the surgery itself may have caused more damage.

I've been where Jason is now and I truly hope he gets that much needed relief soon, by whatever means. Good luck to both of you!

Hi Liz! We must've been typing replies simultaneously! In reading your response and thinking about all the long term tbpi we both know, who between them have had every bpi treatment known to science... it just occurred to me-when we talk about 'relief of pain' we actually only mean relief of unbearable pain, I have to say I don't know any tbpi with no pain at all........do you? Anyone painfree please post here, I want to know your secret! :0)

OH stimulator - not pump - sorry amy...I got it wrong. I wonder if this is what this woman I met recently had implanted. She said however that she was part of a study and that the stimulator she was using was trying for FDA approval....hmm...complicated stuff.. good luck to Jason - I hope he finds so
me relief soon.

-francine