United Brachial Plexus Network, Inc.

In April I was in a major car crash that resulted in my left arm BPI -- total paralysis, horible pain, the whole deal. I've been fortunate enough to be accepted by both UCSF and the Mayo Clinic for evaluation. I know both have very good reputations, especially Mayo, but I live in CA (about 225 miles north of SF) and don't want location to be my decision making factor. Can anyone give me feedback about either and/or both places?

I've had experience with both. I would recommend the Mayo without a second thought. UCSF is a great medical facility and research center with top doctors, but in my experience the BPI team at the Mayo had tons more experience and had researched reparative techniques for BPI more than any other surgeons or medical centers. Their team have literally traveled the world and trained with specialist doing procedures years ahead of what is happening in the States (specifically Asia, because their culture is more willing to accept greater surgical risks than we are here).

It's a pain in the butt to travel back and forth and I wish there was a hospital here in LA I could trust, but in the end, I would do what ever it takes to get the most function back into my arm.

Best of Luck,
Christopher

We have no experience with UCSF but Mayo is wonderful. The drs are very thurough and knowledgeable. They take all the time you need to answer questions. We have had my son there 4 times since his accident. I would definatly see them. Dustin will have his muscle transfer done by the Mayo team.
Sue

Thank you for your reply. Please tell me why it took 4 visits before they decided on this treatment. What were your visits like? Do they have a shuttle from the airport?

I went there once before surgery for my initial consultation and then maybe 4 more times after surgery. First time post surgery is for check up, then I got wrist flexion back on my own w/out surgery, so they released a muscle transfer that held my wrist stable from previously being flail, then I had a tendon transfer to be able to open up my fingers fully and a surgery to save my triceps that my sister & I came up with.

Traveling back & forth there is an obvious downside to the situation, but in my book it's the only option, something you just have to deal with if you want the best return possible for your arm.

Yes, there are shuttles from the airport, about $12 if I remember correctly. Some hotels provide shuttles as well. There is no need for a rental car, unless you have family traveling w/you. We made a few trips into the countryside and toured through the Amish areas. Quite beautiful actually.

Dustin went at 4 mos post accident the first time. They evaluated him, did an EMG and MRI. Since there seemed to be some signal in all nerves they decided to wait a bit to see what would recover as they felt natural recovery would be best. Second visit was 6 mos post accident. Most areas were improving but the bicep and deltoids were testing about the same as the first visit we had there. They decided that since he was 6 mos post accident he was at the outside for a nerve transfer so they prepped him for a nerve transfer. When they went in all nerves were intact so they cleaned out scar tissue. He has been back twice since then for EMG's and to check progress. As all areas were improving they felt it best to let it continue on it's own until there was no more significant improvement. However they did explain options for the bicep as it was still very slow in recovery. We have not seen enough improvement in the bicep to keep waiting and Dustin will have a gracilis transfer in Aug.

Visits were very organized and thurough. His first EMG lasted over 2 hours. We receive a schedule well in advance explaining where and when you need be at a certain area. What will happen. We already have the one for Aug. It is truely amazing. I am very confident in the team there, it's like getting 3 opinions at once. They are very candid, concerned and knowledgable. We came away knowing much more about Dustin's injury then when we arrived there.

They do have shuttles. I am not sure of the cost except that it is free between most hotels and the Mayo clinic and ST Mary's hospital. We live about 4 hours away so we drive. But once there we rent a hotel accross the street from the Mayo and never have to move the car.
Sue

Mayo is excellent! Melanie had her nerve tranfers and muscle transfer there in May, 2006. We were just there in June of this year for a checkup. The brachial plexus team of doctors, therapists, PA's and nurses are super. They really take their time with you and want you to understand everything that's going on. Nothing is hidden or vague. The shuttle from the Rochester Airport is $11.50 per person. Most of the hotels have free shuttles between the hotel and the various Mayo buildings and hospitals. The underground subway (walkway) is very convenient and then if the weather is bad you don't even have to go outside, except if you need to get to St. Mary's!

Thank you for for thorough replies. I go to Mayo at the end of August and UCSF at the beginning of Sept. I don't completely understand what it means to be at the "outside" for a nerve transfer? I hope things have gone well for you, I appreciate your information and candor.

Hello everone again~ I have another question about recovery from surgery: how long was it before you were all back on your feet again after nerve transfer surgery, and then how long was it -- if at all -- before you had any recovery to the paralyzed limb to which you had the nerve transfer? I live alone currently and am thinking about my future plans, wondering what kind of care and arrangements would need to be made. This site has been most useful in realistic information. Thanks.

I'm really very glad that you made the choice to head out to the Mayo, I think you'll be the gladdest after you've made the rounds. Once you get a chance to compare what the surgical options are that each hospital or team offers, you'll more than likely be amazed at the possible difference in recovery you'd get if you went to one place and not the other. I know that is a major part of the drive that keeps me on this forum, making sure people get the right info and best chance at recovery. If I had gone anywhere else I probably would have amputated my arm by now, no joke.

I was walking around at about 5 days post surgery. Both legs/calves had their sural nerves harvested from them and my left thigh had a gracilus muscle taken out as well to be transplanted into my biceps region. I believe it was over six months before I got any movement out of my biceps, but I'm a little foggy on that now, I'll check later and report back if I'm wrong.

My mother flew out and stayed with me in Los Angeles, after I was cut up, for a month, which I'm completely grateful for. Felt a little odd being 34 and having mom taking care of me again, but that's what you get for being single.

Best of Luck,
Christopher