United Brachial Plexus Network, Inc.

hi all!

i've been reading, with great interest, some of the threads on surgery; esp. ellen & john's story!

i've never even been told if my nerves are stretched, ruptured or torn from the spine! i have a right tbpi that is almost 2 years old now - due to surgery.

my 2 questions are this:

1. i'm wondering if there is any surgery that would give me my hand (or even thumb and first 2 fingers) back. i know each case is different, but a generalization would be nice *grin*

2. as i live in canada, i don't think any visits/consults or surgery would be covered by our provincial health plan. i'm on disability and do the "creditor dance" alot, so paying for myself is out of the question. does anyone now if there are any charities or organizations that would help with expenses, or does the mayo clinic have anything to help with costs?

thanks,

jan
oh, i'm 43, divorced and live with my mum who's a senior and on a pension, so nothing there.

Hi Jan,

I'm glad you were interested in our story. One reason you might want to at least talk with Mayo is because they're one of the few bpi groups this side of the world that can do muscle/tendon transfers. The potential advantage to you is that since they are bringing new muscle into the arm, original atrophied muscles aren't such a restriction. Because all of John's nerves were avulsed, the best he will get from his surgery is the ability to make & release a grip.

But since you already know you have some nerves intact, you might look into an article posted here recently (page 3, thread Interesting Article). Basically, a portion of the musculocutaneous nerve going to the muscle called the brachialis is transferred to the portion of the median nerve that controls finger flexion. However, in the US, the Mayo doctors felt there are other more reliable options (ie tendon transfers) that would be lost if you transferred the nerve written about in the article. (But it seemed the patient was able to achieve individual finger movement.)

We've found that Mayo is enough respected that many insurance companies will work with them - even as in-network (which saved us a huge amount of money). Call the business office & see if they can advise you. Their tollfree number is 800-660-4582. Of course, I have no idea if insurance companies will cross borders!

One reason I think insurance companies like working with Mayo is that the cost of surgery is much, much lower than other, privately-owned clinics. The Mayo doctors are actually employees & thus on a salary.

If it isn't feasible for you to head our way, see if you can get a referral to someone in Canada. I have two numbers for Mayo bpi support people, and if they aren't the right people hopefully they can point you in the right direction: 507-266-0537 (Jeannie) or 507-284-0475 (Tammy).

Doesn't hurt to ask, does it!

Take care & keep us posted.

Ellen

thanks, again, ellen!

i'll check all that out and let everyone know.

i can't make a fist or even close my right hand, the fingers are just kind of half-curved when relaxed. i can only straighten them using my good hand.

the mayo clinic is well known and respected up here too!

hugs,

jan

PS - forgot to address your other question about expenses. Somebody on the boards had learned that American Airlines (I think) provided free transportation for medical purposes. Good luck & don't give up.

Ellen

thanks, ellen.

i will be calling them, hopefully, this week.

however, i realized that there will be questions they will probably ask me that i better know the answers to! lol!

i figure some of the questions will be regarding when/where/how i sustained the injury, but i think i may have to call my neurosurgeon (not the one that caused my tbpi!) and ask him the following questions:

1. which nerves are affected?
2. are they stretched, ruptured or avulsed (sp?)?
3. what does he know/think about nerve graphs/transfers for my case? why or why not?
4. what about other surgeries?

can anyone think of any other questions i should ask him so i can be fairly prepared when i call the mayo clinic?

thanks again,

hugs,

jan

Off-line, I'll see about putting you in touch with somebody else who will be going there for the first time next week. He'll probably remember what kind of information he was asked to provide initially.

Neither the EMG nor the MRI are 100% conclusive - so the chances are good that early on, no patient can say definitively the extent of their injuries before surgery is actually performed.

You might also want to ask if the fact that you have your bpi from a less common cause would limit your surgical options - and if Mayo has had experience in cases like yours.

Keep us posted - good luck!

Ellen

great, thanks, ellen!

hugs,

jan

The Mayo Hospital has a terrific reputation for treating TBPI.

I had the great pleasure of hearing Dr Spinner present a paper on "Delayed spinal cord lesions following a post-traumatic brachial plexus injury" at the symposium in Italy recently. Drs. Bishop and Shin were also there, but sadly, I didn't have time to get to talk to them...maybe next time!

It can do no harm to contact them, but I do know that there are at least 2 Drs. in Canada who are treating these injuries. I could pass on your email address to two people in Canada who have been treated for a TBPI if that would help? Let me know anyway..liz@tbpi-group.org

Lizzyb

Speaking of Mayo: Dr. Alex Shin is the orthopedic hand surgeon on the BPI team. He was recently selected as the Sterling Bunnell Traveling Fellow for the American Society for Surgery of the Hand. He will be the 5th Mayo Hand Surgeon in the past 24 years to have received the award.

Dr. Shin's travels for 2005 will focus on Brachial Plexus Reconstruction, and include visits to Bangkok, Beijing, Shanghai, Taipei, Japan, Korea, Montreal, London, Paris and Amsterdam. The visits will be to prominent BP surgeons around the world.

This is one of those times I'm convinced John had his doomed bike ride just a few years too soon...

Ellen

hey lizzie!

thank you! check your email =o)

hugs,

jan