no secondary surgery

[sarahmae]

I have heard that it is uncommon to have primary surgery, and no other surgeries. Our Doc said no surgery. We are 3 months post nerve grapht. Have any of you had this happen? If so did you need surgery later on? Do you wish you would have had it done earlier?
Thanks

[Clint]

It's probably accurate to say that most children who do not have full recovery by 3 months are advised to have further surgery (MQ, Caps, etc.). At least that has been my experience in talking to TCH.

We had hoped that primary would be our only surgery. Unfortunately, it didn't work out that way. But Hannah has had great results from the MQ.

I also think 3 months post-op is a little soon to determine the future.

Good luck.

[Francine_Litz]

At 3 months post nerve graft there's really no way to tell if further surgery will be necessary because it's only 3 months - 3 inches - of innervation. There's a lot more to go.

Like Clint said - I think that if a child has a serious enough injury to have nerve grafting done, then mostly likely there will be more surgery and maybe even multiple surgeries.

I do know, however, of one child who had avulsions and did not need muscle/tendon transfers/releases and she's doing great. But I think that this result is very rare. She is truly blessed.

I ask the docs about this and he said that kids who have avulsions had nothing - then the nerve graft is done and it all gets connected at the same time. Where kids who have ruptures may have some innervation - so innervation happens differently and muscle imbalances occur.

BUT with all that said - EACH CHILD IS DIFFERENT. I hate predictions because it almost sets you up for failure. I rather know the worst possible scenerio and have it not have to happen versus knowing the best possible scenerio and then be completely disappointed. That's a protective stance because I was SO disappointed to find out that Maia needed nerve grafting - I was dead set that she was going to get better and it would be perfect!

3 months is really soon...just keep on praying for more and more innervation! The more the merrier!

have a nice holiday weekend,
francine

[sarahmae]

OUr Doctor really didn't even want to discuss another surgery. He has said from the beginning (directly after surgery) that he didn't think Payton would need any more surgeries. I am just wondering since he is now 10 months, and they don't want to see him back for 6 months, if we should look for another opinion. I know TCH's website says the like to do MQ @12-15 months. That would put us past that. I don't know much about MQ, but I really don't want to have it done. My son already has things out of place, I don't know if I want him rearranged further. Do they know if there are any complications that may have resulted from MQ? Like other joint, muscle, tightness problems?
Sarahmae

[thetylers]

I suggest getting at least another opinion or two and not just stopping with a TCH opinion. There's several schools of thought around muscle transfers and joint related surgeries, so find what you're most comfortable with for you and your child.
Steve T.

[admin]

Steve T,
could you please discuss further the other schools of thoughts beside TCH? I am intrigued by what else is out there - so often everything else seems obscured by TCH. If you check back with this message board, could you please discuss more the other schools of thought and give other doctor's names who you have come across as being well-versed in bpi issues?? Thank you. If you don't check back with this post, I'll try to e-mail you individually.
Thanks

[Francine_Litz]

"Like Clint said - I think that if a child has a serious enough injury to have nerve grafting done, then mostly likely there will be more surgery and maybe even multiple surgeries."

I will rephrase this sentence by saying - that surgery will probably be RECOMMENDED

recommended does not mean that you have to agree to it

just wanted to clarify....

and yes - it's always best to get more than one (or two) opinion(s) if it's possible.

-francine

[Kathleen M]

Dear Guest

If you are in need of information you can check the Medical Resource Directory provided on this site by UBPN In Touch Program.

The goal of this project is to provide a comprehensive resource listing to aid families and individuals in their search for specialized care. UBPN believes in supporting families in their search for full and accurate information and resources to assist them in making completely informed medical decisions.

http://ubpn.org/medicalresources/

I hope this will help you it lists bpi medical centers from all over the world.

Kathleen Mallozzi
UBPN In Touch Chairperson

[m&mmom]

What type of injury did your child have? If some scar tissue was removed maybe that's all that will be needed. After mod quad we were told that Matthew may not need surgery until the age of five, well here we are not even one year past mod quad looking into another surgery.
If you look into TCH from my experience two surgeons there have different approaches so keep that in mind if you check into them.
There also seems to be varying opinions on cutting the pec muscle during mod quad.
But hopefully your child will not need further surgery and you won't have to worry about all this stuff.
Good luck
Cindy

[sarahmae]

C6 and C7 were ruptured. The did cut scare tissue also. They put 10 graphts in each or the effected nerves. I did e-mail Dr. Nath (thanks to the UBPN directory! thank you) He e-mailed me back (same day) He wants us to send a video, and seemed rather frustrated that we were told no surgeries, but I am not so sure I want to take his word either (depending what that may be) If he says surgery now, I may seriously question both docs. I am not anxious to have more surgery. I would love to belive we are not going to need more surgery, but I have to be realistic!
Sarahmae
p.s. thanks for all the responses.