United Brachial Plexus Network, Inc.

I just want to scream and throw a big tantrum! I am not sure what to do about my daughter and how much time I have. Alexyss is almost 8 months old. We are supposed to go back to the surgeon later this month, but that might change to even later. The surgeon wants us to get a second opinion at Scottish Rite for an orthopedist whom she does surgery with. The appointment isn't until May 16th. The surgeon said she wanted to wait to see if Alexyss makes any more improvements b/c that is what the EMG said that she has function. Now her arm is swelling and the orthopedist I go to believes it is b/c the muscles are pushing down on the nerves. We go for an ultrasound in the morning to re-check her shoulder and all. Alexyss did get return of her bicep, but it is taking over the weaker muscles. I know she is not going to get any more return and she is not doing anything new. She still can't externally rotate, bend her elbow, or bring her hand to her mouth. In August she will be a year old. By the time we might be looking into surgery, she will be almost 10 months old. Does anyone have any opinions on how much time she has and how much return she might have being that it is so late in her age? Does anyone know if they do muscle release, what is the likelyhood that she will not need nerve surgery? I doubt that to happen though. I just need advice! Thank you.

Tracey - how about a 2nd opinion from TCH ? You can send them a video and all the info about what you know so far and their team will look it over (no charge) and give you their opinion about it.

http://www.injurednewborn.com/maia/video.html

Sorry I can't help any more - I just don't want to give you any misleading information - you are working with dates now that are very important and you should get your information from the experts.

Good luck - please share with us what you learn.

God Bless,
francine

Hi Tracey
Sorry you are going through so much. Time does seem of the essence. It sounds like you should get a second opinion real soon. There are many great doctors out there who do not even charge you to review video tapes and will give you personal feedback on the phone. Texas Children's Hospital, Dr. Grossman in Miami & Dr. Waters in Boston are all very willing to review video's and offer feedback. Some of the doctors will even call you personally and give you direct time on the phone which is real nice. If you need any further info. feel free to email me personally at mountainmusc@ispchannel.com Not to stress you out more but I would really jump on the opportunity to get feedback from true BPI specialists real soon. Good luck!

I can not advise on such and issue I can only tell you about my daughter and our experience. We were told to wait and then see a specialist in LA. Then back to Ohio and wait some more. They told us she was doing great. Then we were in LA in December 2000 and they scheduled surgery for January. I was so uncomfortable with these doctors I freaked and found the injurednewborn website. I sent a video to Texas Children's overnight and emailed dr. Nath. They got right back to me and explained everything. They did the surgery (nerve graft)in Janurary. Gabrielle was nine months old. They said we should not have waited and they hoped they could help her. I was told that the closer you get to the first birthday the less percentage of mobility may come back. Gabrielle did well and they felt she would do well because of the size of the graft needed (very small). She can lift her arm up over her head now!

See a specialist as soon as possible. Even if she does not need surgery I believe the more you know and the sooner you know you can get her on the right rack. Good Luck.

Hi, Tracey. Just going to echo comments from the others and also suggest that you contact one or two BP Specialists asap. Also, you said that she got return of her biceps, but that she cannot bend her elbow. Did you mean that the EMG indicated biceps, but that they're not strong enough for her to be able to bend her elbow? The biceps are mainly what bends the elbow. Regarding the muscle release surgery that you asked about, that is secondary surgery that isn't usually done until after nerve surgery (if nerve surgery is indicated). Nicole was 10 months old at the time of her nerve surgery and most drs. will still do it at that age; however, if you can get it done sooner it would have a greater chance at being more successful. Not to stress you out, but take into consideration the time factor for getting a surgery date from a surgeon and also getting insurance issues resolved before the surgery date. Wherever you decide to go, you should have them book a surgery date for you asap -- even if you later decide to cancel at least you'll have something set up and can be working on insurance approvals. I hope this helps. I know this is a difficult time and these are not easy decisions. Take care. -Tina )