United Brachial Plexus Network, Inc.

Hi all, DH is getting some more movement- still mostly just when he's laying down, but each new movement feels like such a triumph. And thanks to some earlier posts, he also got some pain meds that are helping immensely. He's sleeping again and so much more optimistic. Anyway,this feels like a silly question, but I'm wondering how you find people with BPI experience beyond the list on the main ubpn board. We are in upstae NY and if surgery looks likely, we will consult with someone in NYC or Phili, but given our location, the fact that we have a one year old and that DH seems to be healing, I would like to meet with someone more local but don't know where to start that search. Any ideas? Thanks-Amanda

Hi Amanda! My name is Kelly and my fiancee has a BPI since 2/17/07. We also live in the Syracuse area. My fiance was in a snowmobile accident when he got his BPI and was hospitalized in University Hospital for a month. We saw one physician here in Syracuse one month after he came home from the hospital. His best outcome was to fuse the shoulder and maybe get some elbow bending. My fiance did have a severe injury, avulsion C6-T1. We were not happy with any of the treatment here in Syracuse and found that no one was familiar with BPI. We went to the Mayo Clinic in June. We went there expecting to have test and consults and schedule surgery and ended up staying there for a month after he had surgery the week that we got there. They were amazing. Their staff is incredible. We were a little upset to leave MN after what great healthcare that we received from them. That is my best advice. We looked for BPI specialist in the area and we are so happy that we chose MN. Please email me if you have any questions. I would love to help you if you need it.

Kelly

DITTO what Kelly said. I searched all over the country for the best possible surgeries for return of function. Ended up at the Mayo for a month, and very happy I did. The best surgeons I met up with, in NYC and at LSU in New Orleans also recommended I take the Mayo option.

You'll find that most everyone that went there for this injury is very grateful they did. I've written this over a hundred times in the last four years and have yet to hear otherwise than Kelly's response. One of the board members from UBPN, Courtney, had a failed muscle transfer from infection from there (an incredibly unfortunate and rare reality) but thats the only negative thing I've ever heard and that is an unpredictable situation.

I'd go there or to John Hopkins to see Dr. Belzberg. Even the best surgeons in NYC said go to Mayo, because TBPI is so uncommon and specific in its treatment for the best possible outcome.

Read and Learn,
Christopher

Kelly-
Thanks so much. I think we're actually familiar with your fiance (though haven't met him) through a friend of a friend. We were actually hoping to be put in touch with him this weekend to ask just this question. Thanks! I will probably have a dozen more questions about local doctors/services as we go.
Also, thanks to both of you on your input on Mayo. We'll think on it until his next appt Monday and then perhaps get started in that direction.
Amanda

Amanda,
Wow what a small world. If you don't mind me asking, who are you seeing in Syracuse and I was just curious who the friend of a friend was? Is your husband doing physical therapy and has he worked with any pain management physicians? Like I said, please feel free to email me if you have any questions. I usually check the board frequently but you can email me to make sure that I get questions. Good luck with your appointment Monday.

Kelly

Hi....

And like all others I am sorry to hear about the accident. My husband is almost 2 years after injury with no hope of any recovery, the reason was time.....we doctored for almost a year before we even heard of the BP, so by that time all surgeries were out of the question.
We are in PA and we see 2 BP doctors, one in Wilkes Barre, Allen J Togut, off of I 80(570-826-2500) no longer does surgery but very knowledgeable,will do all he can to help! Dr Scott Fried in Blue Bell(610-277-1990), near King Of Prussia, amazing DR will not have any surgical options but will refer you to the right places, has amazing neurosurgeons from Drexel that he works with. If you have read about RSD these guys in Drexel are wonderful, my husband gets IV with lidocaine and that is the only pain relief!

Well best of luck to you!
Beth