United Brachial Plexus Network, Inc.

Boy, Guest that is a tough question...I would think that the answer lies in the child...how mature they are, how easily they understand the risks vs. benefits of surgery, etc...I work in the medical field, it is the field of geriatrics and I often see others making decisions for our clients when they have not been deemed incapable of making their health care decisions...I often have to remind children, etc..that the client is still in control and while we listen to their opinions, they do not have the final say...I would imagine the same applies for anyone else...Our children are not considered competent to make their own health care decisions until they are an adult by law...I would hope that I would be able to listen to my child and be very respectful of their wishes, but ultimately until they are 18 I am entirely responsible for the end decision...No matter what age we deal with, making decisions for someone else is really tough to do...I think there is always an element of doubt, no matter what, especially with this birth injury and the fact that medicine is not an exact science and there are always risks involved, and some are very unpleasant and scary...I know this probably doesn't answer your question...it is more food for thought...hope it helped a little...

Bumping this up.

I think it's great to see so many people posting their non-surgical experiences. It's also great to see that the thread has remained very respectful.

In our experience, our daughter has had 4 surgeries. To date, we have had each surgery recommended. However, I just wanted to point out that just b/c we have always done what's been recommended, it doesn't mean that we always will. For us (and perhaps many people here), we don't feel that "once a surgery, always a surgery" applies. There are a few surgeries that might benefit Nicole in the future, but I don't know if we'll have any of them done. So far the decisions have been pretty straight forward and I have no regrets. However, some of the future surgery might be more involved and / or might not necessarily make that much of a difference compared to where Nicole is physically now. So, I have always looked at each surgery as an individual decision. In fact, she actually went to 4 specialists prior to having her first surgery at 10 months old and they all agreed that she should have nerve surgery and that it s/b done asap. We've also sought second opinions for her other surgeries. One thing I'm thankful for is that Dr. Waters has always welcomed us "back" for his opinion, knowing that we've been going to TCH for Nicole's surgeries. He's never talked down about TCH nor has he ever made us feel uncomfortable going back to him.

While it's hard to say exactly what treatments have attributed to what progress (although some of our surgery results were immediate), I believe that they have all taken their place. We've done a lot of therapy, esp. post op, and I certainly feel that w/o that the surgeries wouldn't have been so sucessful. Of her therapies, I think the pool therapy has been the most beneficial. I also attribute Nicole's attitude / personality to her progress. She's always been pretty agreeable to post-op splinting and therapy, which has made it easier to make our decisions. I couldn't imagine sitting through a 30+ minute therapy session with a screaming uncooperative child. I think that even before our children can speak, they have ways of communicating their feelings to us about all this "stuff" we go through.

Anyway, I apologize b/c I'm getting side-tracked here. I also wanted to point out that had Nicole's injury been less severe, it's quite possible we would've foregone surgery (esp. the nerve surgery). At the same time, I understand and respect that even with severe injuries some parents choose not to have surgery regardless. I know that people have their own reasoning and as long as they're comfortable with explaining that reasoning to their child when the time is appropriate, that's really what matters. Anyway, those are my rambling thoughts.

-Tina

Our son Gavin ( 12yrs robpi) had his third surgery 3 years ago when he was 9.5 years old.
We felt the surgeon was correct that he needed surgery because we noticed he had lost a lot of his previous function.
Gavin was NOT keen on having surgery, we were fortunate that at the hospital where his surgeon is based there is a wonderful clinical psychologist who works with Prof Kay and his team - Dr Bellew was happy to discuss Gavin's issues about ahving surgery with him.
It transpired that it wasn't the surgery he was worried about, he was worried that he would ahve to have an IV drip sited in his hand whilst he was awake
and also that he might wake up during the surgery.
Dr Bellew was able to reassure Gavin that he wouldn't wake up and that Gavin and she ( Dr Bellew) would meet with the Anaesthetist prior to the surgery to discuss all aspects of the procedure.
Gavin was very reassured and with the promise of a enw bicycle as a "reward" he went happily into
surgery.
I don't know what I would have done if he was still unhappy about the surgery, I am sure that had I forced him into having it against his will, it would have broken our bond of trust.
I think that probably I would have asked the surgeon
if it was vital that the surgery be performed then, or if he could wait a while to see if Gavin changed his mind.
As it was after the surgery Gavin told me he was pleased he had undergone the procedure as his arm felt much better and he was able to play basket ball easier with his contracture released.
I think as our children get older it is the most awful dilemma that we face, if our children are against surgery, i think that at some point we MUST respect the opinion of the child, even if we try and find out the exact reasons they are against surgery and deal with that aspect first, but if they still are against it, then we must take our childrens viewpoint into consideration.

My dd did not have primary,nor was it recommended from the 1 surgeon we saw (at that time didn't really have a clue what it was, why it was needed and so I didn't get other opinions). Around 18 months I realized this injury was way more than I thought it was and sought other opinions. She was recommended the MQ by TCH around 18 months in a video evaluation. In her hands on eval prior to surgery they also recommended the Bicep Tendon lengthening surgery. I was pretty clueless about that one and felt very uncomfortable with that last minute "add-on". I put the brakes on surgery, got about 5 more opinions from all over the country and decided in the end to got back to TCH for the MQ, but declined the BTL. So far no more surgeries are recommended by TCH, and they don't forsee any. My original choice for surgery though was prompted by an intuitive feeling that our present course of no surgery (which was my goal) was not working for her any more. At that point I decided to seek surgical options. I'm still happy with my decision but also recognize that if I went the no surgery route I'd probably be happy with that route too, but for different reasons. We always wonder the path not chosen, but find ways to justify the path chosen.

oh one more thing, I also received several non-surgical recommendations from 4 therapists and 2 pediatricians. If I had thought about other things that might have been beneficial like acupuncture or chiropractic work I would have sought their opinions too. The area where I live is very conventional and conservative when it comes to this injury and I hadn't educated myself at that time on alternatives to just therapy, surgery, no surgery options as related to this injury. Also, there are two dr's in my family so my personal support system is more biased to the medical community. If I thought we might have to go down the surgical route again I'd start right at the beginning again and I'd open the questions up not just to dr's, surgeons, and therapists, but this time I'd also seek advice and opinions from alternative medicine practioners, sports medicine folks, anyone who may come across this injury and knows alternative outcomes in the long run.

The only surgeon (or for that matter "BPI specialist") my dd sees now on a regular bases is TCH surgeon, for annual follow-up based on her previous surgery. I view the therapy team, and mostly myself though as the ones guiding her care. I envision the therapy team getting smaller (now it's at 3) as my daughter gets older (3.5 now) and being replaced by more conventional physical activities that she does on her own and also as she starts taking more ownership of her injury (which she's already starting to do).

Hello, I an so happy to hear that I am not alone with not going the surgical route with my daughter. She also had very little movement early on. Now she can raise her arm to shoulder height. She still has a slightly rotated shoulfer and forearm as well as a contracture in her elbow. We are still in ot/pt and will be for a long time but felt the pain of surgery might not be worth it. Still sometimes second guess ourselves but I think that's normal. My husband doesn't want to come to the picnics because she is doing well now. I think we should go and support UBPN though. Thanks so much for writing!

I just posted more or lessthe same question over on the OBPI section.
I am 25 and never had surgery, nor do I see myself having any in the future.
When I was younger they did offer it but trust me it didn't sound like it would benefit me at all and could have had more of a chance it could make life worse. However that was years ago and technology has come so far.
Still not for me.
But I don't think I'm alone anymore.
-Traci

Traci,

Isn't it nice to not feel so alone? I am so glad that you posted and simply shared that it is not for you. Thanks for sharing! I hope to hear more from you on this board since I sense I could learn a lot from you.

Thanks to all who have shared on this post. It has been enlightening to hear from those of you who have chosen different paths. Often times I think we forget that we have choices regarding surgery vs. no surgery, and that often the answers aren't as clear as we think they are.

My daughter is 9 and she will be having surgery next week.I feel the same way,we waited, she has great muscle tone but can't bring her arm past her shoulder,and her arm is shorter than the other.I'm glad we waited but it is time now to have a tendon transfer and we all discussed it and it was my daughter who really wants it .It will give her 30 percent more movement.I'm really scared of opening that can of worms.We are hoping for the best.Good luck to you and your son.