United Brachial Plexus Network, Inc.

Marnie,

I emailed you last year about the TT. My son Michael had the surgery in November 2005. We saw Dr. Nath in Chicago in September and he also recommended another surgery. I don't want to sound like a complainer, but how much can these children take. Every time we see Dr. Nath there is something else. I don't think I can do it again. Michael has had 4 surgeries and I think that is it. I have come to know his arm will never be perfect and I don't believe the surgeries will help that. I just feel like to gain something you always lose a little of something else. Just my thoughts. I guess just like you I am venting. I love Dr. Nath but I think we are done with surgeries.

Ellie, how is Michael doing? What surgery is being recommended now? Was the triangle tilt a success for Micheal?

hi, I am new to the board. I used it a lot when my son had the mod. then a lot changed. Emersen in 13 and seen dr. nath in Vegas. he said we needed to do the tt as soon as possible. Emersen will be hitting a major growth spurt really soon and he needs to have surgery before that happens. I left it up to him to choose. He wants to do it. but now I'm not sure after reading the problems. Emersen has a lot of mobility and no one really notices because he hides it well. he is a lot weaker and has no supanation or pronation. but can do everything pretty well he doesn't wash his hair good or hit a baseball perfect, and he doesn't mind . he just wants to be and look the same and have a normal arm. any suggestions on what we should do? wait till he is older or go for it and risk the progress he has already gained. Thank you all for your input.

I think that there are alot of questions to be asked. We were told that regression in Peyton was due to growth, so if your son has the surgery, how will growth effect the results? Will he regress after having a major growth spurt? This surgery is so new, there are no long term results yet. If more parents would come forward and give their results from this surgery, I think it would help alot.

What a hard decision - especially since Emersen wants the surgery (since he is 13 and probably can mostly (or completely) understand what the surgery entails - does he understand all of the pros and cons of the surgery?). As I wrote above, my son has nothing but positive results from his TT. He is 5, though. One thing that came to my mind when I read your post is timing - I thought that this surgery could only be done up to a certain age (and I don't know what that is... if I am, in fact, correct) so how much time do you have to research and make a decision?

And.... this is something that I am struggling with as a parent of 2 older children who are not BPI but have some issues of thier own - at what point do the kids have the right to make decisions about their own bodies - even if it isn't the decision that we, as parents, think is the "right" one? Please don't flame me about this last part - it is something that I think about constantly (my oldest child needs daily meds, frequent doctor visits, and tests more often than most children - what do I do when he decides that he doesn't want to take his meds, etc?) Sorry to make this about me.... it wasn't my intention!!

I seem to recall seeing posts about taking your child's feelings into consideration when planning a surgery - but I only seem to recall seeing the opposite situation (the parent thinks that the "right" plan is surgery and the child doesn't want the surgery (for whatever reason))

Many hugs and best wishes for a decision that you are all comfortable with

Mom2Michael:
I first want to address your issue about "what if a child doesn't want to comply"? My son just went off his epilepsy meds (doctor approved). He is 11 1/2 years old. He took the meds for more than 6 years. Only at one point did he NOT take them and it was because he was unhappy at having had a "bad" eeg. We talked about it and he understood how important it was that he continue taking the meds. I am sure you are doing this with your child with medical issues. I think making your child aware of all the choices available and the ramifications of each choice allows them not only to see how hard it is to make those decisions, but also allows them to ask questions and to give their opinion. Remember, until they are 18, you are still the responsible party. Now, that doesn't mean you just decide... but know that you still can say "i'm the mommmy..."

As for the rush to TT... I worry when I'm told that I have to do things RIGHT NOW! Aside from nerve grafting, where the need to do it by about a year is well documented, why would TT need to be done RIGHT NOW? I would want to check out some other docs and see what they say. If a child wants to have a voice, then they should hear more than one option, as we do.

The medical resource page is fabulous. Call or email some of the docs there.

good luck,
claudia

Dear Emos'Mom,

My heart goes out to you and your son's tough decision regarding whether or not to do the TT. My son, though only 4 had his first ever surgery at the end of Sept -- which was the TT. Before surgery, he was similar it sounds to your son -- very strong, hardly any supination (w/o a really bent-up arm), internally rotated, a little bent.. but, he could do just about anything -- sports, etc. It was a tough decision for us to go into the "unknown" arm of post-surgery. But, I have to say, so far it has been amazing to see how nice and straight Zack's arm hangs. His suppenation is a beautiful thing to see, let me tell you. And, his scapula looks pretty good too. When he first came out of the splint during the day, he was overly suppenated, but that quickly corrected itself ( we do therapy 3 x a wk) and now our biggest challenge is w/ weakness and tightness getting his arm straight up. Dr. Nath said this will get better w/ time. Zack's arm is weaker that's for sure, and your son will notice that right away... but, he is 13... so, he will be able to understand the process of building up strength and stretching out that arm w/ the therapist than my little guy. After reading this whole post, I have to agree w/ one of the posts re: timing ---- I didn't think it was recommended past the age of 8. But, on the other hand -- the option is for the arm to just continue to do what it wants to do when the growth spurt that you mention occurs. It's a lot to consider, and sometimes when I watch the struggle we have with getting Zack's arm straight up, I do get worried... but, it's only been 1 1/2 months since we took the splint off for daytime...and, I am optomistic that it's going to get better and better. And, when I see the happiness on Zack's face when he can grab a ball with both hands normal - it's all worth it. I know we have a journey ahead of us. And it scares me to think of Dr. Nath ever suggesting another surgery or a re-do...that would be upsetting, for sure. I always learn so much from this message board -- these mom's are amazing advocates for their children. You have come to the right place to hopefully gather some useful information - And, if I can be of any further help to you - please don't hesitate to ask. Sincerely, April

Thank you all for the input. Emersen had a hard time making this decicion. he took 3 months we told him it would and hurt and showed him all the splints and how long he would be in it. the new thing we learned on the site is it was longer to sleep in it then we were told. 12 weeks full time 6 months at nite. the year thing is a little long. Emersen loves to swim and wake board in Arizona it gets really hot. and in the winter he snowboards and rides bmx he was willing to give up his summer but winter is pushing it. the time issue is bugging him now also my husband says he can do everything he wants and if he struggles he finds a way to do it and not be left behind. He doesn't want him to get it. but I do. Dr. Nath said we had till he hits puberty. or starts shaving. that could be now or in 6 months. The other option is the osteotomy.

Michael is doing great. He recommended possibly two more surgeries. Mentally I think Michael is done with them. He gained some from the triangle tilt, but I think he lost a little too. How is Peyton doing? I hope your holidays were nice.

Hello Everyone,

Let me start by saying I am so sorry to hear that some kids have regressed. My son Mark had the TT last august 2006 and he is doing wonderful. He was originally placed in the gunslinger after surgery but has recently changed to the SARO brace. Mark is 12 years old and this was his only surgery. Marks results are amazing and he seems to be improving all the time. When we met Dr. Nath last July he recomended we do the surgery as soon as we could because Mark was at the age when puberty sets in and growth spurts arise. Before the surgery Mark was unable to supinate at all, had an extremely flared elbow, was unable to bring his hand to his mouth ( while eating) without having his elbow close to ear level. Marks scapula was elevated and flared extensively. He has gained much of this back.Is it 100%, of course not but he has a lot more function and is thrilled at what he can do. However he does have a little overhead weakness which was too be expected. He is working hard in therapy 2 x a week. Always remember that every child is different. Its a hard decision to make when your child is having one surgery and to make that decision many times must be very difficult....my heart goes out to you....