United Brachial Plexus Network, Inc.

2 WORDS MAYO CLINIC

THEY ARE YOUR BEST SHOT! MAN DON'T GIVE UP

BRANDON

Hi Mike, and welcome to the "club nobody wants to join". I'm the Ellen who was referred to several posts earlier. My son John had all five nerves avulsed when he was 15, and the Mayo Clinic team has done a phenominal job in giving him the ability to move his arm, make/release a grip - and have a degree of functionality he never would have had. Not only that, the movement John has regained from the surgery has enabled him to be completely pain free now... which frankly had been the worst component of this injury. (Not everybody has pain relief from surgery but we're so thankful John did.) btw, John's injury was right at three years ago, and his surgery was ~ 2 1/2 years ago.

Anyway, I agree with earlier posts that recommend you consider your surgical options for recovery before assuming amputation is the way to go. In my opinion, the Mayo Clinic is a premier facility that should be on your short list. Since they're comprised of a team of surgeons with different specialities (ortho, hand, neuro) they can offer surgical options not all other bpi clinics can offer.

Since you're in the military, you might consider going to the Naval Medical Center San Diego to see the Hand Surgeon/Ortho Surgeons there. Our favorite Mayo doctor, Alex Shin, was over their Hand Division for five years, and in fact trained all of their hand surgeons. Quite often, the Naval Medical Center will refer their patients to Mayo as they have an ongoing & excellent working relationship.

Best of luck, keep us posted & let us know if you have other questions. Also feel free to email me directly.

Take care,

Ellen Bramblett

Ellen, would you consider talking with me. I saw you son on the web site for the Mayo Clinic and tried to call to get your number. I need to talk to someone, but mostly my son needs someone his own age to talk to. He is 19 and had a car crash on May 07 of this year. We are tying to decide if we should have surgery and who should do it. Did you every consider Dr. Nath in Houston? Why did you choose Mayo? My email is dennelllukkari@yahoo.com.

How old is you son? What did you think of Dr. Nath and his staff and the hospital? My son is 19 and trying to decide what to do.

Sorry I am trying to get the hang of this site. Mike I would like to reply to you and am looking for someone to talk to my son. His injury is severe, most likely all the nerves are pulled from the spine and he is really confused. In Michigan where we live almost all of the doctors say amputation. But I just don't know. I can completely understand how you must feel, I watch my son dragging his arm around and say ok let's amputate and then I see someone like Ellen's son who got back some movement and think maybe the surgery is better. I just know if I could find someone to talk to Ryan it would help him decide and not feel so alone. He thinks he will never be able to do things he used to.

Hi Dennell,

I'm sorry I was unaware of your posts until just now. John is now 18 & was 15 when he had his accident. You're doing the right thing to ask a lot of questions because it's a lot to get your head around. If you're like me, you'd never heard of bpi until you had to become an expert overnight.

Feel free to give me a call, home 404-843-4453. We live in Atlanta so are on EST.

Re how we chose Mayo, we'd originally made appts for John at the primary three clinics we tended to hear the most about on the boards: Mayo, Nath & Kline/Tiel. Ends up the first appt was at Mayo and we were blown away by the whole experience & just kind of knew we were where we were supposed to be. For one thing, since the three primary Mayo doctors have different specialties & think independently, we felt we were already getting our "three opinions" right there. We cancelled the other two appts & just stayed on for surgery - and have never looked back.

If you read many of these posts, you'll see that people tend to be very loyal to whichever doctor did their surgery. There are many more than those "big three" we'd originally heard about. They tend to be either plastic surgeons or ortho/neurosurgeons, since both medical disciplines developed techniques for microsurgery.

Feel free to email me or call. Take care,

Ellen

Hi my name is caralyn and I just had my accident in January of 05 I am 14 years and I removed all my nervers from my spine all but the C5 but it was to damaged to work with. Listen, go to the Mayo Clinic that's where i had my surgery done. This is your own dissusion you still are really young and still have much life to live and many surgerys you can do. If you do decide to keep the arm get surgery done before it is to late. If you have any questions on how to do things e-mail me. at sunycara@yahoo.com

What Mayo clinic are we talking about? Are they are all the same. My son has an appointment on dec. 12th in Jacksonville, FL. Would it be better to go to the one in Minn? My son is 21 and his injury happened in Sept. 05. He is currently being seen by Dr. Zager from University of PA hospital in Phila., PA. Thanks in advance for your comments.

diane
mother of son with BPI

Hi Diane,

Everything I've seen points to the Rochester location for injuries sustained from a traumatic (adult) injury. Looking at the Mayo website, it looks as if the Jax location primarily works with infants. I may be wrong but that's the impression I got from the site. Give them a call to clarify. But since you already have the 12/12 appt in Jax, perhaps it's best to keep it & if they refer you on to Rochester at least you're already in the system.

(On another thread, Christopher wrote that the Minn location was fairly swamped right now since many Kline/Tiel patients have been referred to Mayo due to the hurricane damage in New Orleans.)

The following url shows the different Mayo locations & treatment options:
http://www.mayoclinic.org/brachial-plex ... njury.html

Take care,

Ellen

Just one more thought about Mayo's Rochester Minn location: The team there (three primary surgeons with different specialities) includes Dr. Alex Shin, who was awarded a Brunnel Fellowship that has allowed him to travel extensively this year, all over the world, meeting with & learning from eminent bpi specialists in other countries. That speaks highly of him & the expertise he's been able to bring back to the Mayo team.

Take care,

Ellen