United Brachial Plexus Network, Inc.

I had an evaluation by Dr. MacCinnon and then had a second opinion with Belzburg. I ended up with with Belzburg at Johns Hopkins just because it is closer to where I live. They both gave me the identical advice and I would strongly recommend either one.

We're currently researching surgeons for our son Chase(age 7) and have continuously been brought to the following: Susan Mackinnon @ Washington University (she wants to see Chase asap 4/22), Allan Belzberg @ Johns Hopkins (waiting to be scheduled), and Spinner, Bishop and Shin @ Mayo (scheduled for 6/1). We're not up for travelling to all three as we're coming from California and have 2 younger children, but want to make the best choice for Chase. We'd love to hear about your experiences, opinions asap either privately or on the forum. Thanks!
Lourdes

Since all three are highly regarded, you might want to go with whoever can see Chase first. (Although perhaps a more relevant question would be which doctor could schedule surgery the soonest. Dr. A might see you next week but there's a 3 month delay for surgery. Dr. B might not see you for 2 months but typically patients stay on for immediate surgery.)

Another thought - assuming surgery will be recommended, it's likely there will be regular followup appts for quite awhile. (John returned to Mayo 4 x year until more recently when it changed to twice a year.) So perhaps you should consider relative travel expense in there too.

Take care, & keep us posted.

Ellen

I read your comments on Susan Mackinnon. We have a 9 year old daughter with left hand paralysis, from brachial plexus injury. Did dr. Mackinnon work with a gracilis muscle transfer with your son? Please let us know, we would appreciate any information

This is really a question--does your daughter have use of her arm? I can only curl 2 pounds after 6 weeks of OT but have use of my arm. Shoulder hurt like blazes. This is 4 month after car accident and the hand is getting worse. Thanks

It is good to read such high regards of Susan MacKinnon.

After my daughters Orthopedic Surgeon died suddenly in late 1996. I was referred to Dr. MacKinnon, and took her several times in 1998. Dr MacKinnon had her see another Dr. too. And several tests were done. EMG and exrays.

My daughter was born severe LOBPI in 1984, and to date has never had any BPI surgery. Although she did get functional return, with years and years of therapy. Her original Doctors said they were sure her nerves were avulsed, her injury was so severe.

In my daugters case Dr MacKinnon did not do anything.....said nothing more could be done. She was age 14 then.

Dr. MacKinnon did my rt. TBPI nerve transfer repair 6 years ago. I had severe internal damage and am almost, if not completely avulsed. Nothing happened for 16 months but I now have good elbow flexion. She was actually a pioneer in these types of repairs. She received some press early in her career for it but others are now doing the same thing. I do remember though lying in bed reading the New York Times on a Sunday morning about 5 months after my surgery and there she was inside the paper, picture and all, looking gorgeous talking about stem cell research!! She's impressive, talks fast, honest, not ego-driven like a lot of surgeons and the doctors, nurses and her physical therpists are extraordinarily loyal. That says a lot about a doctor.

Your sons injury sounds similar to my sons. His shoulder did not move and he had some movement in his arm. Luckily we were referred to Dr. Mackinnon and he had nerve transfers 5 mos after his accident. It has been 7 mos and he is getting muscle movement and is expecting it to timprove more over the next year. Hope your son has improved too. I guess it takes a lot of time.

My mother has a TBPI from a gunshot wound in Jan2006. She lives in Missouri and has been very happy with Dr. Gelberman at St Louis University. He specializes in BP and the hand, believe he is the Chief of Neuro there. She is also going to Mayos and pursuing surgery through the team there... good luck. annie

Hi there,
great news about your son. dr mackinnon performed nerve transfer surgery on my husband (03/09/06. but so far he has not seen any major improvement. currently he is experiencing sharp shoooting pain up and down his arm. did your son have a lot of pain during his recovery?
Patty