Mayo Clinic BPI website - John's story

[EllenB]

Mayo just posted a writeup about what they did for John (who, for those of you new to this site, avulsed all five BP nerves in November '02). He had two surgeries last year to move muscle/tendon/nerves from his legs (called a double Doi, or free muscle transfer), and also to reroute living nerves from his good arm, chest & left lung.

Of course, the Clinic can explain all this MUCH better than me, so take a look if you're interested.

Also, we have finally found a source to transfer the edited portion of the Mayo documentary to DVD. If you are interested in VHS or DVD, just email me directly w/your address. (And many thanks to Courtney, who may have already handled all those requests!)

Ellen

[EllenB]

Must have had a brain fart - forgot the url. Here 'tis. Just click on John's picture on the right to get to the writeup.

http://www.mayoclinic.org/brachialplexus-rst/

[cbe411]

Glad to have helped out Ellen! I was very interested in it myself and searched out a copy from Chris (hdcrash) and made copies from there, even sent 2 to the UK! Best of luck to John with recovery!

Courtney xo

[Susana]

Ellen, even though I knew your sons story it made me cry. I am so happy that there is hope even for people with root avulsions.

[admin]

My son -18 years old - had avulsed The nerves from C6 - T1 ( they have to do more tests to see about C5. Happened on 26 Nov 03- and I was worried about time running out for surgery.
We live in South Africa, near Cape Town and only has one hand neurosurgeon, who is also treating brah. Plex. injuries- It seems that the experts on BP all went overseas to practice there. Seems like we shall have to start thinking about costs if we want to give him best change on recovery. How far did your so recover?
Greetings
Elgonda

[EllenB]

Hi, Elgonda.

I'm so sorry about your son's injury. Your timing is very good, since most surgeons prefer to operate within six months of the injury. John had two surgeries, first just before three months & the second about two months later. All that to say, if more than one surgery is recommended it is best to move quickly.

If you do head to the US for consultations, you'd be smart to include the Mayo Clinic in Rochester. One advantage of Mayo is that it's three doctors, with different specialties, who work together. Each of John's surgeries was around ten hours, even with the three working together - so you can imagine how hard that would be to duplicate elsewhere.

But all I know about is the US. Other posts are high on doctors in England & Germany, so you may want to explore that as well. Since your son is 18, your family could stay at a Ronald McDonald House (many hospitals have them nearby) for just $10/night (which includes use of a large kitchen & much donated food).

In terms of recovery, John can bend his elbow & make a fist - and all five of his nerves were avulsed. A lot of his therapy now is to build strength. We have a film of his second surgery - if you want a VHS or DVD copy, send your address to my email.

Ask any questions you have - this site offers much support. And please keep us posted as you explore your options.

Ellen

[admin]

My Son received a brachial plexus injury avulsion on C5, C6, C7, C8 and T1 snowboarding in Colorado. He is 17years old and I am seeking the best possible place to take him. I don't receive much encouragement from Dr's. here nor at Stanford. I want a more positive prognosis than I have been getting. They tell me that if this operation was really successful then more people would be doing it. I was encouraged to read John's story. I am trying to get an appointment at Mayo. There is a Dr. in Texas that sounds good..His name is Rahul Nath and I have been talking to him via e-mail, however, no one knows him. Mayo has an excellent reputation and I think my Dr. here would feel more comfortable with me going to Mayo than to Texas. I live in California and I have insurance but travel expenses are an issue, as my husband is on disability and my income only covers our medical insurance and prescriptions, so I can't go and check out anything. I need to make a decision soon. (He was hurt Jan. 26, 2004. Thanks, Pat Wallace

[EllenB]

Hi Pat,

I'm so sorry about your son.

Just letting you know I'm sending you an email. You are smart to be moving so quickly forward in researching the next step, since a long delay would ultimately limit the surgical options a doctor could offer. How do you already know all five are actually avulsed? (EMGs & myelograms aren't 100% conclusive.)

Take care - there are a LOT of us out here to support you.

Ellen

[EllenB]

PS - Pat, if I read it right, sounded like one of your doctors said more people would be doing "Mayo" procedures if they really worked. If that's referring to the free muscle transfer (called a Double Doi) that was done for John, I don't think other doctors can offer it unless they work as part of a team, each having different specialties. It's an extremely complicated procedure - and the operation took all three surgeons over 10 hours (i.e. 30 man hours).

And in my opinion, it did work. John's was a worst case scenario (all five avulsed) and he can already bend his arm & make a fist... from surgeries last February & April.

Hope that helps...

Ellen

[admin]

I already had surgery with Dr. Nath, do you think I should go to the Mayo clinic to see what they have to offer me?