Primary Surgery

[admin]

Those of you with children that have had primary surgery - how were the results? What function did you child have before - and then after the surgery?

I have a 3 month old who may need it and I was just curious what I could expect and how long it would be after surgery before I could see the improvements?

Julie

[Francine_Litz]

Hi Julie,

Maia had 3 ruptured nerves so she needed surgery to repair them as nothing else could have helped really. That's about what it came down to for her. If the nerves are torn - they just don't know how to grow back very well and if they are avulsed (pulled out of the spinal column) well that is the most serious injury. Of course I don't know what Maia would have had, if we didn't do surgery - I can surmise that it wouldn't be much... and now she has a lot of function comparitively speaking. Is it the end all? Will it make it perfect? no - it's pretty much a lifetime issue if your child has a severe injury. And then again it all depends on the injury itself, your child's ability to heal, when you have the surgery (earlier the better) and many more things that come to play.

Primary surgery was a very difficult time for us. We had so hoped that she wouldn't need it -that it would all be fine - and then finding out that surgery was imminent and "here is the date" - it kind of punched us in our guts.

The good part is that now 5 years later I can tell you that Maia goes to kindergarten - has great fun there - she goes to ballet & tap classes, music classes, she can swim with a floatie (would probably swim better but she's allergic to chlorine so it's not often we get a chance to do it). She writes with her non-dominant hand - she works hard at it. She's very independent - thanks to some great OT's...and she's the love of our life.

She's had four surgeries to date and each one has given her more and more function. We're very grateful that primary surgery exists and that the doctors we go to have such tenacity to keep on working so hard at figuring things out.

I wish you the best for your child and hope that she gets the best recovery possible.

My suggestion to you is to educate yourself as much as you can about the injury, the surgery, and the doctors you have chosen.

Good luck and blessings to your little sweet pea.

-francine
http://www.injurednewborn.com
http://www.injurednewborn.com/maia/homepage.html

[Francine_Litz]

improvements - forgot to answer that part -

when you repair a nerve, it has to start growing from the beginning again - so it grows 1 inch a month

so at first there should be no movement and then it will start coming in slowly..... then we believe that maia had nerve regrowth for a very long time - years really.

The hardest part is waiting but once the movements come in, it's like one miracle after another.

[Beedle]

Julie....
My daughter is about to have her first opperation on Monday the 26th of October, she will be one day short of 19weeks old.
We've had an MRI done to see which nerves have avulsed. The nerves that have avulsed are C6, C7 and T1, although she doesn't have Horners syndrome. We were told by our Physio that it is quite common to loose all movement after surgery, especially where avulsions happen and need to have nerve grafts done. I was told this is mainly because of the trauma to the nerve, Kinda like going back to square one. Sometime movement remains in some way, depending on where they need to poke around.
I was also told to expect to have no movement for at least 3 months, possibly 6 months.
Good luck with your childs surgery.

[JaimeC]

Well, from a different perspective - My son didn't have primary surgery (a long story - but we didn't know it was available. This was almost 8 years ago). Because of it he has little function in his hand and forearm. He can bend his elbow and raise his arm, thanks to the mod-quad, but had he had primary, I feel sure he would have gotten more function. I'm very regretful I can tell you that.
Good luck
Jaime

[admin]

Thanks for the info. A few more questions, If a child gets the secondary surgery and not the primary does that mean they wouldn't see as good results? Can a child just have primary and no other surgeries? What does the primary surgery do? What will a child be able to do after primary that they couldn't do before? Is there any downside to waiting until the child is closer to a year old (or maybe 7 - 10 months) to do primary?

Are there any good doctors for this surgery other than just the ones in Texas. I would like to speak to a few before I make a decison on who to choose.

Julie

[njbirk]

Julie,

UBPN has a directory of bpi specialists on this website arranged geographically. It includes not only contact information but answers to questions we asked each doctor/clinic about the kinds of surgery that they do. So be sure to check out the Questionnaire responses for each doctor/clinic as well.

http://ubpn.org/medicalresources/

Nancy Birk
UBPN President

[admin]

Hello-

My son was born on 8/14/03 with a brachial plexus injury to his right arm.

He is now 10 weeks old and has been going to therapy since he was one week old.

He has made some really nice improvements since birth.
He has lots of hand, wrist and finger movement, shoulder movement and triceps movement.
We just started to see a little initiation of bicep movement 2 weeks ago.

Does anyone have any insight on what doctors look for in a primary surgery candidate? Or I guess I should say, what kinds of movements should a child have in order to skip the primary surgery.

Jason is our first child (the love of our lives), but this has been a very trying time for us.

It's nice to know there are others out there who can lend support.

Thank you.

[Francine_Litz]

Hi Julie -

Primary is suggested when they know for sure that there is a serious injury - meaning a rupture or an avulsion. Sometimes when a child has primary because movement did not come in it could also be because of nerve compression (which is not as serious) so scar tissue just has to be removed. I don't believe that anyone does primary on a whim because it's quite a serious surgery.

Primary surgery is not always necessary - that is for a specialist to decide.

Secondary surgeries are not always necessary either. There are many different types of secondary surgeries and a specialist will keep on watching the child and assessing things as time goes by.

Muscle imbalances are common with the children as are disclocation. When a major muscle doesn't get innervated in time, they may want to transplant a new muscle in it's place. They may do other surgeries to try and get hand, wrist and finger function. There is a HUGE list of possible surgeries for a bpi injury.

I know of a child who had avulsions, got primary surgery, and needed only one very minor secondary surgery...and it's years later and this little one is fine. Nothing else in the future.

And my daughter had partial ruptures and has had four surgeries.

There's no pattern you can even follow - so we are always telling people on here not to compare children.

There are people who opt to take a conservative approach and not do any surgery and find themselves a doctor who agrees with a conservative approach. And there are people who find doctors who take an aggressive approach and follow that path.

There are plenty of doctors around the country who now do this work and families have had great results with. I'm sure they will come forward to add to this post.

You and your partner have to research all the information out there and make these kind of decisions. And you need to trust your gut on what you feel is right for your child. The more educated you become - the easier it will be to make these decisions. There's no right way or wrong way.

There is a great bibliography on here that may be helpful (on the homepage hit the link to the Medical Resources and there will be a link to the bibliography there).

I do wish you the best,
francine

[Francine_Litz]

Dani - they look for strong hand to mouth function with the child in a seated position (not using gravity to help) between 4-6 months. Also - they first look at the hand,wrist and fingers... if there is no hand,wrist, finger function, then surgery is actually done much sooner.

On the home page check on the page called INFORMATION FOR NEW PARENTS - the time line is explained there.

-francine