United Brachial Plexus Network, Inc.

We saw Dr. Grossman and Dr. Price last week in NYC. My daughter is 10mo, has great range, crawls normally, weight bears equally, can move arm above her head but is still internally rotated and can only supinate to neutral. If fact, those are really her only issues right now. Bicep, tricep, deltoids all are strong. Dr. Grossman suggested that we still have nerve surgery. We were shocked. All other BPI specialist (we have seen 5) have said no nerve surgery because she has so much movement. Dr. Grossmans theory is that we can still re-innervate (not sure term) the nerve that supplies the external rotators that she is lacking. He said he has had great results and he is publishing an article on this next month. We have pretty much discounted his opinion because we dont want to loose movement and he is the only dr who recommmend this..also because of her age we would have to do it ASAP and we are not comfortable with that. Has anyone else done this?
Thanks

It's possible that she may not lose any movement (permanently) depending on how the graft is done...

for example - is he cutting anything out? or is he just supplementing...

I have a picture of the nerve grafts that were done on Maia on her site in the primary area... they cut away the dead parts of the neuroma, kept the live parts and did what they called a "bypass graft" meaning that they didn't take away what she had but added to what she had...

they sewed the nerve in above the neuroma and below the neuroma while keeping the neuroma intact...

anyway - just figured I'd give you that info so you can ask more questions...

when in doubt - trust your gut - you'll know what you should do because you'll feel really good about it... don't stop asking questions until you feel really good about your decision - whether it is to do this surgery or not to do this surgery...

good luck,
francine

thank you francine. we saw these drs to help us make up our minds about mod quad and now we have a whole new set of decisions.

Hi, Sabrina (my daughter) has had surgery done with Dr. Grossman. I can tell you I like him very much and he isn't one that is very surgery happy. If you have any questions feel free to email me.
sleeplessinfl2000@yahoo.com
My name is Dana and Sabrina is 3.

well
Grossman advised us to have surgery asap also, we declined and my son has more than fine recovery, Ms Ramos also went on to tell me that if I didnt do e-stim with my baby he would never have good recovery, I remember saying, what else can I do...like, they are surgeons, they dont know anything else (well ok, many do, but sometimes thats what it seems like)
that is one of the reasons I know today that surgeons and specialists dont know K N O W anything, they can only guess, and he was wayyyyyyyyy wrong with his guess about my son, who is doing fine without surgery over 4 years later.
Do not discount your gut
YOU are the most important specialist in your child's life!

Hello, my daughter too had surgery @ 7months with Dr. G in Miami and continues to see him in NY now. We are all happy with her results. I can tell you that Dr. G is a conservative when it comes to surgery. Did you share you doubts about surgery with him? and what other doctors have said? I'm sure he would be happy to discuss and invite other professional opinions to clarify his recommendation. From what you wrote, and from my own experience, it sounds like your daughter is doing GREAT. But as a parent only you can make that final decision. I wish you all the best for you and your family.

have you talked with the therapist about the internal rotation and supination? my son i 9yrs now and the internal rotation is a major problem. check with the doctor and see what percent the external rotators are innervated. it can make a huge difference in the long run. jacob is only about 20% innervated and he was too old for nerve graft surgery when we found the right doctors but he did get the mod quad which has helped some but not enough to balance the rotator cuff muscles so that the bones form normally. discuss this openly with the doctors and have them explain it carefully. every child is different. good luck