Questions about surgery

[Lauren (Brooke's mom)]

Sorry about that--I didn't mean to start that post to Tina. I meant Lucy's mom and then Tina on the first line.

It's been a long day!

Lauren

[admin]

Thanks for all of your replies! It has been a crazy few weeks. We have gotten 2nd and 3rd opinions on Lucy's LOBPI. The 3rd opinion was just last Monday and it seemed the most optimistic. The Dr. did agree that she is still too young to determine if she will need surgery immediately. He thought that she had movement in her Lats and Triceps and was not convinced that there were any avulsions b/c her left arm has not visibly atrophied and is still the same size as the right (she has good muscle tone too). The first 2 opinions felt she definitely had avulsions at C8 and T1 because she has Horner's syndrome (which is actually just affecting the eyelid and not the pupil) and no movement in her hand since birth. She had an MRI last week and they detected pseudomenigoceles at C8 and T1 as well. We understand that the MRI is still not 100% accurate either.

Knowing what we have learned over the last couple of weeks we are going to defer surgery at this point b/c we are a bit more optimistic that she is getting some movement back and would hate to rush into a longer recovery time if we do surgery now. I truly appreciate everyone's insight and experiences. I'll keep you all posted once we learn more! Carol

[Lauren (Brooke's mom)]

Carol,

My daughter didn't have any hand movement at birth either. I think you should find a new doctor. There are lots of variations of this injury. Just because there isn't hand movement doesn't mean there are avulsions! Brooke ended up just having a severe stretch injury of all five nerves. Her hand IS returning--slowly. We had doctors in the beginning that told us the same type of stuff your doctors are telling you. It's BS-all they are doing is speculating.

I think you are making a good decision by waiting a few months to make a decision for surgery or not. If my daughter was grafted at 11 weeks she still would not have any function. She didn't need grafts! She has a ton of movement.

Good luck!
Lauren
(Brooke's mom/8 mos. LOBPI)

[Lauren (Brooke's mom)]

One more thing. I didn't know this in the beginning and thought you should. They don't graft for the lower roots. The regrowth process is too long and it has never returned function to the hand. Some doctors like to gauge the severity of upper root injuries based on the lower roots. So they fear the worst when the lower roots have been affected. Anyway, just thought it would be a good piece of info for you to have if you hadn't already been told that.

Lauren