United Brachial Plexus Network, Inc.

Good Morning! I am sorry to hear of your son's injury. My name is Mark and I was at Mayo in Mn on 9/20-21. I felt very fortunate to have been seen by the doctors and staff at Mayo. I saw Dr. Black, Dr. Kilfoyle, and Dr R. Spinner. I was one of the lucky ones who received a diagnosis of Parsonage-Turner Syndrome. It is a condition that generally goes away on its own over time. Thank goodness that I went to Mayo-I may have received an unnecessary surgery somewhere else. Your son will be in great hands at Mayo. One thing I learned at Mayo is that the Drs. are on salary-they don't profit by doing things that may not need to be done. I found that very comforting. Best of luck on the trip. Give my best to your son.

In my opinion, you can do no better than Mayo. My son (now 18) had complete avulsions when he was 15. Because the doctors at Mayo have different specialties & work as a team, they are able to offer surgical options not always available elsewhere. (Specialties are in neurosurgery, ortho & hand.)

Among other things, Mayo moved the gracilis muscles/tendons from John's legs into his arm, & powered that as well as bicep, tricep & deltoid with transferred nerves. (btw, the gracilis is used to grip inward, so unless you ride horses you don't miss them.) From having a completely paralyzed arm & immense pain, John now has the ability to bend his arm, move it in various ways & make/release a grip with his hand. Also, he is virtually pain free & is now off all meds.

John's 2nd surgery at Mayo was filmed by Discovery Health Channel for a special they were doing on teams at Mayo, and if you want to send your address to my email, I'm happy to loan you a video or DVD. This might help you understand what was done as well as "meet" the doctors (Bishop, Spinner, Shin).

Also, the (April? May?) issue of Outreach, which is published by this website, has a couple articles on Mayo - one outlining our experiences there & the other submitted by the clinic.

Please continue to ask questions, and take care. You are not alone.

Ellen

Here's one article

http://www.mayoclinic.org/mcitems/mc240 ... 48-s02.pdf

If you would like to be on the mailing list to receive Outreach, it is free, please email nancy@ubpn.org

Best of luck to you

Karen
mother to Ryan age 28, motorcycle accident Feb 2000

Richard - thanks for the url about the clinic. I didn't think to include the one that tells John's story when I posted earlier:

http://www.mayoclinic.org/orthopedicsur ... floyd.html

I'm so glad to have found you. My son was has an injury that sounds the same as your son's as a result of a May 1 fatal car accident. We thought that he had only a stretch injury to his brachial plexus, but found out yesterday that it is more likely total evulsion. His Dr. called today & has suggested we see the doctors that you saw at the Mayo Clinic. I would so appreciate any information or help that you may give us. I am encouraged to hear your son is doing well. We have so many questions...ANY help would be greatly appreciated. We are looking at going within the next few weeks. We live in RI.
Thank you!

To MarianneM

We have an appointment at Mayo on Oct 3rd and 4th. I will try to get back with you soon to let you know how it went for us. Jeanne

Marianne,

What are your questions? I bet no matter what, someone on this site will know the answer!

Ellen

Hello all, I am not tramitic injured but saw this post and wanted to comment. I was injured at birth in my right arm.

Anyway, I just wanted to say that even though I do not go to Mayo clinic at this point (I am still abloe to get my care through Shriners) My doctor is from Mayo. They have excelent staff over there and that is where I intend to get my treatment after I am out of the shriners system (when I turn 21).

The Mayo clinic doctors are doing much research on BPI's both TBPI and OBPI. Even my doctor is getting in on the research and has a few articles published.

A great Doctor at Mayo is Dr. Steven Moran (my doctor at shriners currently) He has done so much research in the last year, he is well on his way to becoming a bpi specialist. He is very kind to all of his patients and staff. He will take the extra minute to explain stuff until you are comfortable.

I have not met the others at Mayo, but I have heard great things.

Hope that helps,
Amy ROBPI age 18 from MN
hope16_05@hotmail.com

How does one arrange to see a specialist at the Mayo Clinic?