United Brachial Plexus Network, Inc.

I don't really know how to ask this question, but here goes. Does anyone feel like there is always another surgery for these kids. My son has had 4 surgeries. I would say he has about 75% use of his arm. But after seeing Dr. Nath, he recommended 2 more surgeries. How much can these kids take. My son had the triangle tilt and gained alot, but now he is recommend the bicep lengthening and the one they cut the bone (I forgot the name). My son is now 10 and does not want anymore. When is enough, how do you know how to make the right decision. Of course we want the best.

Here would be my answer to that question, Sometimes we wish that there would be another surgery for us (I guess in this case I am referring to older bpi people, and at the least, myself) I would say that since your son is 10 years old and doesnt want any more surgery, dont make him. Those two surgeries are ones that dont really have a time line so they can wait for if and when your son decides that he wants another surgery. 75% is really not that bad, if he fuctions well on a daily basis let him choose. At that age, he old enough to know what he wants.

Good luck!
Amy 19 years old ROBPI from MN

I'm in the same position with my child. We had a long talk about this and made the decision to set up a "life plan" which includes giving the affected arm attention with specific exercise, e-stim, bracing and splinting and anything else we have to do at any particular time to keep function and movement maintained. If something changes and we cannot keep the status quo and all of the non-surgical things we are doing fails to maintain the status quo, then we will have to consider surgery. I think that we just can't stop giving the arm (and the body) attention because then in time you will lose the gains you've made and things will reverse. And unfortunately sometimes the reversals happen fast.

My son frankie had two surgeries 11 months and 2 yrs old then I went to a clinic when he was 5 they said they wanted to do the mod quad but would only get about 10% more movement he has a bad bpi he said no more I try to let him decide and the doctors felt if he didn't want it he wouldn't do the therapy now at 13 he has decided he wants more he wants to get as much use as possible at any cost cast, surgery's or therapy I don't know if it will be easier now or not but he wants it.

My son is eight and has a ROBPI. I thought too for awhile that there would always be another surgery for him. Before we saw our doctor at a satelite visit....I dreaded hearing those words again, but we didn't. There was a surgery that we could chose to do, but that the doctor said he wouldn't do it to his child because for my son, it would not gain function only cosmetically improve him. We chose not to go with the surgery. If my son was recommended for surgery at 10 and he didn't want it....so be it. At this point I would give him a choice.....it is not like it is life threatening......I cried when I heard those words from my doctor...only because of the relief factor....if my son decides later that he wants to improve his"LOOK" then off we go to get surgery for now, we are done. !! GAYLE

Ellie:
The decision to engage in more surgery for your child is your decision. So many people never had (or have) the opportunity to have surgery and have gone on to accomplish all they want in life. There is only one surgery that is really time specific and that is nerve grafting. After that, it is up to you. Are muscle transfers better earlier? Logic would say so, but has the science? And even so, you can wait.

If your son has function that he is happy with, let it go. At 10 years old he can tell you that he has had it. And if he can do the things that are important to him with the function he has, then listen to him. Have you gone to other doctors for 2nd opinions? I am always amazed by the differences in opinions. And I am happy for them, as they give me more questions to ask and more to learn.

BTW, we did biceps lengthening on our daughter and would NOT recommend it at all. It severely weakened her biceps and her contracture is slowly coming back.

The decision to have surgery is a difficult and personal one, but there is nothing wrong with just sitting back and focusing on other parts of your life and your son's life. Perhaps telling yourself that you'll leave it on the back burner for a year and revisit it then will help you feel like you are just taking a different road, not giving up.

By the way, things are changing so quickly now in bpi treatment, you never know what will be available down the road.

We all want the best for our kids. Hard as it is, sometimes the best for our kids is to just let it go. Let them just live the life they have. I know that when I start to get agitated, I think about Nancy and Kath and John and how they just live their lives. They had (have) careers and children and families and did not focus on what they couldn't do.

just my opinion,
claudia

After reading how well Jessica (just turned 3) is doing, I again wonder if we made the right decision to have any of the surgeries so early. Should we have let nature take its course and waited until later down the road to see if surgery was needed? My best wishes to you in making a decision for surgery!

one thing I forgot to mention, that if we dont want the surgery we are certainly not going to work hard in therapy which really defeats the purpose of surgery.

If your child decides to have surgery they will most likely work harder in therapy after. Making the best gains possible!

Amy 19 ROBPI from MN

Surgery is a personal decision that each family has to make on their own and I never regreted our decision to wait. If something WOULD happen to Sarah for us to consider surgery, it would def. be her choice. It is her arm afterall.


Good luck to you and your son in all you do.

~Mandie

I think we all hope that "this one will be the last". I'm thinking that right now. Our daughter having had 2 surgeries already, and scheduled for her 3rd this Dec. They have all been "successful" for us so far. With each child being different on top of every injury being so different your questions are hard ones. Weather you're considering an intial surgery, another surgery or not to have one at all is dependent on what is best not only for your child at this stage in life, but what is best for your family as a whole. With all the continued studies and advacments for these injuries there most likely will always be "one more" that could be done.