United Brachial Plexus Network, Inc.

hello
I am seeking information New England Doctors.
Seems everyone favors Mayo, does anyone have any experience with anyone closer to New Hampshire

Poly
25 Tbpi Nov 06

Poly,
Welcome, but sorry you had to join us. Ask away, as much and as often as needed, that's what we are all here for. I am proud to say that I am a fellow New Hampshirer. Where abouts in NH are you at? How did you get your injury?

There's Dartmouth Hitchcock Medical Center up in Hanover, NH ( http://www.dhmc.org ). I grew up in Hanover and spent most of my youth in and out of that hospital getting patched up for one thing or another. It's a fine hospital, great for many things and one of the very best in New England, but you'll find this injury requires very specialized and progressive surgeons that are hard to find and are not common. I now live in Los Angeles, but couldn't find adequate help here, believe it or not, and that was a blessing, because it made me look elsewhere. I ended up having my surgeries at the Mayo Clinic in Minnesota, after traveling all over the U.S. and even to England to try and find the best out there to help get the most functional return back possible in my arm and shoulder.

If I were you, I head down to Boston to Mass General Hospital meet up with Dr. Peter Waters for a start ( http://ubpn.org/medicalresources/wa ... ntact.html ). He's with Harvard University and probably the best that I know of in that area. Problem is, he deals mostly with infants and the situation is a bit different for adults. If I could make a suggestion, to just go ahead and schedule an appointment with the team at the Mayo Clinic ASAP anyway, as they are booked up for months in advance, you can always cancel later if you decide to go with someone else. They recommend surgery around 3-4 months after injury. The Mayo offers surgeries that just aren't being done elsewhere in the States, and if they are now being done now by other doctors, no one will have the experience and team work approach that the Mayo offers (3 Drs. working and operating together). I only say this, because I hate to think of anyone getting less return of function than possible. If your injury was back in November, you'll want to get surgery very soon, of course depending on what kind of damage was actually done. But at the very least you need to make sure you get accurate diagnostics done very very soon. No diagnostic imaging will be as good as the initial exploratory surgery though, unfortunately.

Do you have any idea how bad your injury is yet? What kind of tests have been run on you so far, ie; MRI, CT Scan, Myelogram, X-Rays etc.? Is your arm, shoulder and hand totally paralyzed, or does some of it still work? Do you have insurance (I hate this question!)?

If you want to talk and ask questions, feel free to give me a call (323-464-6366) I know one handed typing is a pain in the butt!

Live Free or Die,
Christopher

PS Here's a bunch of info and images I've collected over the past four years since my injury that might help you learn a bit more about what you're dealing with ( http://homepage.mac.com/cljanney/PhotoAlbum8.html ). If I can ever be of any help, please feel free to call or email. Best of Luck. Any snow on the ground or what? When I went back for Christmas it was the worst snow year of my 38 ever! Be well.

How about Johns Hopkins in Baltimore? Dr. Allan Belzberg has a pretty good reputation for tbpi. Not New England, but closer than Mayo.

I can add that Dr. Belzburg & Mayo Clinic often refer patients to each other - i.e. there is a great deal of mutual respect between them, and the surgical options offered are similar. Dr. Belzburg doesn't tend to have as long a waitlist to get in, either. But I will also add that we used Mayo & were very pleased with them.

Take care,

Ellen

i have to clear something up.

It is my son whom has the injury.He had an MRI and has damage to c5 c6 c7 and t1, the extent is gray due to swelling.The arm and hand are totally paralyzed.He does have insurance.The injury was a car accident.

We live south of Manchester,in a small town. stone throw way from Mass. Bostons about 2hours. Still no snow,not that i mind.

Thanks for the advice.I am sure i will have plenty questions.Any clue on the sucess rate of BPI surgery

Success rate of bpi surgery? Varies as much as the injuries do. It certainly is not like bone surgery where the chances of healing are usually very good and the odds fairly clear.

In comparison, not a lot is known about nerves, other than that they can be easily traumatized, and recover very slowly, and in some cases, can't recover. You will hopefully hear from other mothers whose kids have had similar injuries to your son's. Our son's has turned out not to be so bad, no avulsions or serious damage at the roots. In that case, surgery is usually advised sooner rather than later.

Best of luck. It's a scary injury with a long and uncertain future.

Wherever you go for medical help, make sure the surgeon has experience with tbpi.

Small town, south of Manchester... anywhere near Mont Vernon?

Ellen

Hi,
It's a small town called New Ipswich, closer to the Mass line. Mt Vernon is about 30 minutes northeast.

if you would like to chat My Aim name is MLVaillan

poly

Hey - I don't know anything about online chatting. But my brother's family lives in Mont Vernon (my sister-in-law is Emily Archer, of Milkweek Arts: http://www.milkweedarts.com) and I didn't know if you lived nearby or perhaps had seen her work at craft shows or other events. We love the area up there - it's SO beautiful!

Take care & let us know how we can help with your bpi questions.

Ellen

Hi Poly -

As you are now probably aware you are not alone in this. This message board is a wealth of information and support.
My son is now 26 and injured in a car accident 6.5 years ago. It was a tough road but things do get better and eventually it's possible to move on. We live in Connecticut but Eric had his surgery in New Orleans with Dr. Tiel. At the time of Eric's injury we were told that was our best option. Dr. Tiel is part of Dr. Kline's practice and Dr. Kline has been a leader in the repair of BP injuries for many years. Eric's surgery was considered to be successful in that he gained some connection to either his deltoid or bicep (I can't remember which it was so trust me when I say that you move on). Anyway, I believe that Mayo is now the best option because of their team approach. I thought I'd respond to let you know that there are not many surgeons who specialize in this field so plan on having to travel for the best. It is a little difficult not being nearby for follow-up care (we traveled to New Orleans for 5 yearly follow-up visits). Also - we met Dr. Belzburg at a UBPN gathering and he was great too. He really understood the injury and especially the pain involved. Good Luck!

Nancy