United Brachial Plexus Network, Inc.

We have focused on therapy and turned down most surgeries we were told our child needed. We are very pleased. I think it is really hard to tell how far your child may have gone without the surgery. I know some may beg to differ, but I have seen several children who took the no surgery route, with extensive therapy and most have far surpassed expectations. I think it is a personal choice.

To the top for new parents.

Joshua was on the borderline of needing primary surgery. We did not choose primary because the odds were just about even whether it would make him better or worse.

He is 12.5 months old now, and still has significant abduction and external rotation limitations. We were willing to wait until he was 3 or 4 before doing anything, since sometime recovery can take that long to show up. Except that his shoulder joint is developing abnormally and he's starting to dislocate. If we let that continue, there would be a good chance any future nerve/muscle recovery would be seriously limited, and muscle transfers wouldn't be as effective. So he's going in for anterior capsule release at the end of this month to hopefully correct the malformation of his shoulder that has been occurring. We are also praying that once this is corrected, we will see that he has had nerve recovery that we haven't seen yet because of the bad joint mechanics in his shoulder.

Kate

bumping it up for new posters.

HI,

My daugter is 3 1/2 with no surgery so far. Although we have been told recently that she needs the mod quad. the doctors sing the praises of what this surgery could do for her. They never told me she could lose fuction in other areas.
I have spent the last couple hrs reading every response on the board, and I think the reposes are wonderful and respectful, and I think we all do what is in the best interest of our children. Each childs injury is different, and recovery levels are different.
The neurologist my daughter has seen since birth is a big believer in nature healing vs surgical healing. We continue to see him every 6 months or so and he is amazed her recovery (3 avulsions) she has far surpassed what the doctors said she would ever be able to do. lots of hand function, lift up 90 degrees, and so on. Kaitlyn is now being followed to see how much progress can he made with Therapy only.
Granted she has therapy several times a week. Swimming,horses(hippotherapy),OT,PT, lots of ROM at home, splinting, tapping,and (other stuff too, sorry brain freeze).
I am definately going to be asking more questions of the docs that want to do the mod. Because she continues to progress, and I don't want to hinder this. OK BIGGGGG "GREY" AREA.
More thinking, more questions, more frustration, more decisions, more prayer.......lots of prayer.
This is such a huge decision, and as parents (all of us) we make the best one we can for our children. so whether we choose surgery or not, lets all try not to second guess ourselves too much (very difficult).
Thanks so much for "listening"
Hugs and prayers to all
Jeni

Sarah is 3 years old and has had no surgery. We chose not to see a bpi specialist at all. She has and is having great progress and didn't feel the need to lost what we had just to get her elbow to stay down while putting her hang in her mouth. It was our personal decision and i respect anyone who makes their own decisions instead of following a crowd, no matter the choice. If in Sarahs future we need it, or she wants it, we can cross that bridge when we get there.

God bless all of our babies..

Mandie

Many of the centers do not follow the kids who decide not to have surgery, so they have no comparisons. Every child I've heard of who chose the non surgical route has had significantly better recovery than the experts predicted. If your doctor says your child needs certain surgeries, ask them how many kids they follow who have no surgery. You'd be amazed at how many have no long term records of these kids.

To the top for new posters, this thread is inspirational

to the top

To the top for people worrying about surgery. It's important to know that many of the children and adults in this thread have severe injuries and have had surgery recommended by bpi doctors, they decided against it.
There must come a time in all cases where the decision must be taken to stop the surgeries because unfortunately many people with a bpi just don't get full recovery and a child's quality of life needs to be taken into consideration.