Seeking surgeon recommendations and general advice

[mmarieg]

Hello - I am new to UBPN. My son is 8 weeks and has brachial plexus injuries to his left arm. His hand and wrist is strong and also has strong shoulder movement, but is unable to lift his arm/hand to his mouth or up towards his head.

I am seeking references as to the best surgeon in the US - we consulted with the Texas BP Institute who is recommending surgery if our son is unable to regain bicep movement by the end of his 3rd month. I would love to get a second opinion. Has anyone been to the Texas institute and have experiences to share?

What BP clinic is considered the best/most experienced in the country?

Also, I'd love to hear your experiences with your babies experience either with or without surgery.

I truly appreciate hearing your stories and recommendations for a new mother going through this process.

Thanks so much,

Michelle (mmarieg@usa.net)

[katep]

I'm confused by what you mean by "strong shoulder movement" if he can't bring his hand to his mouth? Can you elaborate on that? If it is very specific movements/muscles that are dramatically "missing" even though everything else seems to have recovered well, then targeted nerve transfers (transfers of nerve "juice" to specific locations) can make more sense than general plexus reconstruction. They also have the added benefit that they can be done on a little more relaxed time frame.

More targeted transfers seem to be the future in nerve reconstruction for OBPI. I would make sure you get an opinion from one of the doctors who are doing them. I now Dr. Kozin in Philadelphia does (he's not the only one, just one I know of). I'm not sure if they mentioned this as a possibility at the Texas BP Institute or not. I know one child who had a targeted transfer to just his triceps at nearly 3 years old with Dr. Kozin with very good results.

Kate

[mmarieg]

To be more specific, he can lift his arm up a couple of inches by using his shoulder. He also has strong hand and wrist. And also a bit of tricep (resistance downward). But he cannot bend at his elbow at all or lift his arm very high at all (i.e. to mouth or head).

Thanks again for any advice/recommendations.

[Carolyn J]

mmarieg,
I bumped up a topic thread discussing BPI specialists..."Update here... 11Week Old..."
FYI, you can type in a word or Phrase in the "Search Forum" Box along the top of any page and posts on that subject should come up for you to read.

BTW ,WELCOME to our UBPN Family,mmarieg.
Carolyn J
LOBPI/72++

[katep]

To be more specific, he can lift his arm up a couple of inches by using his shoulder. He also has strong hand and wrist. And also a bit of tricep (resistance downward). But he cannot bend at his elbow at all or lift his arm very high at all (i.e. to mouth or head).

Thanks again for any advice/recommendations.

Thanks for the clarification. That sounds like a more typical presentation of BPI. Hopefully since he's only 8 weeks old and he's had some good recovery already, he'll get those movements too. Good luck in your search for a second opinion. Many doctors also do video consultations as well.

Kate

[claudia]

Hi!
and welcome to the ubpn's website.
Please go to our Medical Resource page. We have many doctors there, with their contact information. I always recommend that new parents get 3 opinions, difficult as that can be.

We take our daughter , who is now 11 1/2, to Drs. Kozin, Waters and Price. We have also consulted with Dr. Pearl and Dr. Armenta.

She has had 4 surgeries.

good luck. remember, ask lots of questions...both here and to the docs.

claudia

[Akelly]

I recommend Dr.Shin, Dr. Bishop and Dr. Spinner at Mayo Clinic in Rochester. Our daughter is now 8- she had a nerve graft and two nerve transfers when she was 3 months old. She is near perfect now! Climbing trees, monkey bars and playing softball. Other than external rotation on the shoulder (which make jump roping and crawl stroke in swimming difficult- but she can still do them in her own way) no one knows or notices her brachial plexus injury.

[anotherbpimom...]

Hi, you didn't state where you live. If you are near California, I would strongly recommend Dr. Stevanovic at Children's Hospital, Los Angeles. I researched like crazy, was very picky and was so happy to have him close by. I can't say enough about him.

[Nattydee]

Hi, you didn't state where you live. If you are near California, I would strongly recommend Dr. Stevanovic at Children's Hospital, Los Angeles. I researched like crazy, was very picky and was so happy to have him close by. I can't say enough about him.

I'm also having the same problem with my son and I live in CA. So, hank you very much about your advice. I will try to see Dr. Stevanovic, hope he can help.