United Brachial Plexus Network, Inc.

Since i watched that life line episode *and for the last 8 years* i was always wondered about a muscle transplant.

I always thought if a muscle was transplant to help the one active head in my bicep, and a muscul was transplanted to help the deltoid, and the nerves of these muscle conected to the undamaged section of the trunk, that i may gain more control of my are.

Kind of like the young man on the DHC show.

Who should i contact, to ask about this?

Thanks
Troy

Troy,

Here's the link to the Mayo TBPI website: http://www.mayoclinic.org/brachialplexu ... uries.html

The Drs. are Allen Bishop, Alex Shin and Robert Spinner, or as we call them...."the miracle workers".

John's stepdad,
Gene

I didn't realise they can transplant muscle for the deltoid...thought they could only do shoulder fusion up there. Which muscle/tendon to they take for deltoid transfer.

hi Troy,
I just had a mussle transplant done on 10-15-03, the Doc. I used is at the Mayo clinic in Rochester, Mn.; his name is Alexander Y. Shin,MD....
The doctors @the Mayo is really increadable.... Seems like a controlled cayoss... There you don`t meet with just 1 doctor, it`s a team of them; to discuss what would be the best treatment 4 you.....If you would like more info on these doctors that I`ve seen you can E-mail me & I`ll be more than happy to give you there names & Phone #`s..... good luck, I really hope you have sucess

Keith please contact me at Troy.Runck@state.co.us

Aurelia,

I don't know if other muscles are used for BPI function, but for John's surgery (shown on the Discovery Health Channel documentary) they took the gracilus muscles. These are in the inner thigh & you only miss them if you ride horses (i.e. they are used for gripping). The procedure used at Mayo was called a Double Doi. The first gracilus was used for shoulder thru elbow, and the second was for hand movement. John can now bend his arm & grip his hand -and he'd had total avulsion of all five BP nerves so we're thrilled with the progress.

Hope this helps!

Ellen Bramblett

Hi Ellen,

We are very happy that John is having such great recovery. It shows me that since my son Eric's injury and surgery in 2000 there has been a lot of progress in surgical techniques. As you know we had our surgery at LSU with Dr. Tiel and Eric's surgery is considered to be very successful but, unfortunately, his surgery will bring no recovery to the hand. We went with the best option at the time and there are no regrets because we are lucky to have what we've got.

P.S. Someone I work with promised me he'd tape the Discovery Channel special and they didn't follow through. Any chance that they'll be re-running the episode, or that they'll be selling it? I was able to purchase a PBS episode about a special they did that included the mirror box for pain.

Hi Nancy!

Gene & I are still trying to figure out the best option for making the 14 minute BPI portion easily "sendable" so stay tuned. We also need to check w/Discovery Health Channel to make sure we don't step on corporate toes with an unofficial version.

DHC will be sending us an unedited tape at some point - they took a ton of footage which wasn't included. So it might be that we could ultimately use portions of that as well for a version that would be more relevant to us BPI people.

I know what you mean about medical advances & "if only". The posts about reimplanting nerves back into the spinal cord make me realize the wealth of options that will be available for future BPI patients. Oh well...

Take care,

Ellen

Ellen and Gene~
I got an e-mail from your husband awhile ago; I have been a patient @ Mayo for 16 yrs. I had a muscle transfer-my tricep is now my bicep. I sow Dr Bishop, and Dr Spinner in May and they want to do more muscle transfers. It has been 15 yrs since my last. They believe I am a good candidate to transfer 3 more from my neck, back shoulder and upper shoulder. I would have a web looking shoulder from stretching but they believe I may be able to raise my arm!!?? I have C5, 6 and 7 avulsed from my spine. They have come so far what they can do now. I need my shoulder fused but waiting on that. Does your son want plastic surgery at all? I had it to "fill out" my arm and Dr Craig Johnson did my last 3 surgeries, he is @ Mayo.
Whats next for your son? I was 17 when my happened. I know how he feels. I'm 34 now and still going strong. Does he have pain?
Kathleen in Chicago~

Hey Kathleen -

The main thing John's working on now is building strength (via PT, OT, e-stim, pool therapy). Although he can bend his arm very well on a table, he's yet to do it against gravity, altho the most recent EMG is showing tricep flickers. John's hand grip will also need to strengthen.

At the Mayo checkup, the doctors noticed some "bowstringing" of the gracilus tendon on John's inner arm. (If you saw the documentary, you might have noticed it.) Mayo will monitor it to see if it improves on its own as recovery progresses - if not, there may be some minor surgery this summer. The only other potential surgery would be to clean up scar tissue if the rate of recovery seemed to slow - but too soon to know about that.

Thanks for the referral to Dr. Johnson re plastic surgery. We haven't even talked about that but at some point it may come up on the radar screen. Were you pleased with the result of your surgery? Could you email me before & after pictures?

How did your accident happen? I agree it's rough to be a teen, but after reading so many other posts on this site, perhaps it's good to be able to select a career that's realistic, before going off to college.

John does have pain but it's gotten better over time -partly from learning how to deal with it but also we think from the nerve regrowth he's had so far. He was able to stop taking amiptriptyline completely & has also cut his neurontin in half. He's planning to try cutting back on the topomax next. How about you? Also, have you had secondary problems (such as back pain from overcompensating) over the years?

What are your thoughts about the surgery proposal? Can you get referrals to others who have had this done? What muscle was used for the transfer 15 years ago? I'm curious how things have progressed.

Do you know Suzanne in Chicago? She had her accident in '99 & posts on this board too.

Ellen