anyone in western NY area with TBPI?

Treatments, Rehabilitation, and Recovery
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pdegre
Posts: 2
Joined: Thu Feb 16, 2006 7:24 pm

anyone in western NY area with TBPI?

Post by pdegre »

We live in Buffalo, NY. My husband was injured 6/20/05 in a motorcycle accident. We were referred to Dr. MacKinnon in St Louis but that's 12 hours away (driving). She just wants to see him for a consultation.
Then we were told by our insurance that Dr Tomaino in Rochester, NY could treat my husband. Anyone ever hear of him?
Does anyone else know of a doctor (BPI specialist) in the WNY area who is also reputable? Any leads are appreciated.
Brian
Posts: 18
Joined: Mon Apr 04, 2005 4:17 pm

Re: anyone in western NY area with TBPI?

Post by Brian »

I have never heard of him, but thats not to say he is not good. I am from Ny and the best doctors did nothing for me. The Mayo clinic is the best and only option if you want the best for your husband and his future quality of life. I now have a chance to have some movement out of my arm and hand. I have already seen great results and will be back at Mayo next thursday for my six month check up.
EllenB
Posts: 604
Joined: Sun Jan 12, 2003 1:22 pm

Re: anyone in western NY area with TBPI?

Post by EllenB »

How far are you from Johns Hopkins Hospital in Baltimore? Dr. Allen Belzburg is highly respected by the Mayo Clinic doctors, and might be closer to you - plus I don't think he has a long a waitlist for appointments.

Take care,

Ellen
pdegre
Posts: 2
Joined: Thu Feb 16, 2006 7:24 pm

Re: anyone in western NY area with TBPI?

Post by pdegre »

Thank you Brian & EllenB. What are your stories?
Isn't it crazy how doctor's simply don't care? We are basically left to find all this out for ourselves. I am really glad I found this site. At least I can read up on some experiences and resources.
Patty
EllenB
Posts: 604
Joined: Sun Jan 12, 2003 1:22 pm

Re: anyone in western NY area with TBPI?

Post by EllenB »

Hey Patty - the attached url will take you to an overview of John's story, which was posted on the Mayo Clinic website. We have been more than pleased with the doctors and the facility there and highly recommend them to anyone. But I also know that Dr. Belzburg (Johns Hopkins, Baltimore) and Mayo frequently send patients to each other, can offer the same surgical options - and is located closer to you. I expect you'll also hear from other patients with doctors in your more immediate area, but still hope you'll put Mayo as well as Belzburg on your short list to consider.

Take care,

Ellen

http://www.mayoclinic.org/brachial-plex ... floyd.html
cbe411
Posts: 1393
Joined: Sun Jun 01, 2003 8:27 pm
Injury Description, Date, extent, surgical intervention etc: MVA in 2001, nerve graph in 2002, Median Nerve Transfer in 2004 and an unsuccessful Gracillis Muscle Transfer in 2006. I am living life and loving it! Feel free to contact me :)
Location: Grosse Pointe Woods, MI
Contact:

Re: anyone in western NY area with TBPI?

Post by cbe411 »

Im not sure how far you are from NYC either, but Dr. Wolfe is there. I have not personally seen or spoken with him but I have heard good things from others here on the boards.

Courtney
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Christopher
Posts: 845
Joined: Wed Jun 18, 2003 10:09 pm
Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02

Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed

BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.

Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)

"Do what you can, with what you have, where you are."
~Theodore Roosevelt
Location: Los Angeles, California USA

Re: anyone in western NY area with TBPI?

Post by Christopher »

I've met with Dr. Wolfe in Manhattan, he's great, but even he recommended that I stick with the Mayo because they could offer more options and more return of function. Which I did and am glad I did.

Please don't let too much time pass before choosing a surgeon and surgery date, as 4 months post injury seems to be the best timing to determine what kind of surgeries are best and operate.

Best of luck to you and your husband.

Christopher
peter
Posts: 34
Joined: Sat Jan 07, 2006 10:33 pm

Re: anyone in western NY area with TBPI?

Post by peter »

Go with the Mayo clinic. Don't worry about how far... you want the best right?

Call them up, fax your paperwork, Jeannie will call you back with an appointment the next day for you to go there 2 weeks from then.

You go there take tests for 2 days in a row. 3 surgeons will sit down and have a consultation based on those tests and if surgery is an option, they would operate on the third. They run a tight ship. Hotels are either right across the street or maybe a block away.

I'm from NYC, and after I researched, the Mayo made the most sense. I asked Dr Bishop how many of these operations he has done, he told me he did over 150 last year alone. He's been doing this for 19 years.

I got into my accident(motorcycle) 7/10/05, got operated on last friday....... PLEASE DON'T WASTE TIME, call as soon as possible. Don't worry about money and distance.

Ex: There are 2 stores. There's one on the corner and the other is in the next town over.
The corner store has spoiled milk, the next town over has fresh milk delivered this morning......... Now which store would you go to?
Brian
Posts: 18
Joined: Mon Apr 04, 2005 4:17 pm

Re: anyone in western NY area with TBPI?

Post by Brian »

I would love to help you and anyone else I could with my experiences. Ellen was great with guiding me to the best help possible at the Mayo clinic. Call me Brian 914 557 8536
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: anyone in western NY area with TBPI?

Post by admin »

Thank you everyone!
We went and saw Dr MacKinnon in St Louis last week and she will do surgery next week. So hopefully this will work out. I would definetely recommend seeing her. She was quoted in the Wall St Journal article 02/21/06 "new treatments for paralyzed limbs". Patty
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