United Brachial Plexus Network, Inc.

I find this doctor's website hard to understand-it's like there is stuff missed out, I don't feel I'm getting the full picture. Plus, pages disappear and then I assume that whatever claims they made have turned out to be wrong. I don't think this doctor is one of America's Top Doctors anymore, and yet his website makes it appear as though he is - not untruthful, but definitely misleading. This makes me uneasy about his claims for these surgeries. If he published his results I would feel a lot easier in making decisions about them. Like previous posters I am well aware of the risks of surgery and as it is elective and we know our kids would survive just fine without surgery, I really don't see how anyone can compare that to cancer treatment. If I make that decision about surgery I want more information to help me decide what's right other than what he gives out. I want other doctors to acknowledge that this is what works - other bpi doctors submit their work for scrutiny by bpi doctors worldwide-why not Dr Nath? People have said well, why should he? Because that would help me decide what surgery my child might need, as the work of other doctors already has.

"From what I understand, the TT does a better job at addressing the same issues the acromio did."

Yes, but the first surgery to "fix" her arm didn't stick AT ALL?!? That's great that the triangle tilt is supposedly better, but the first didn't do ANYTHING. What does "better" mean in that case?

HAS ANYONE HAD ANY BAD RESULTS OF THE TT. HAS YOUR CHILD LOST OR GAINED ANY ROM? THANKS FOR HELP.

Guest,thanks for your response, but I am still not seeing a CONCRETE answer to my question. Being conservative isn't reason enough for me. Why EXACTLY are people so against this surgery? Thanks.

Matt's dad:
on the off topic: eat my Yankees dust.. okay, I feel better now!

On the issue of surgery. Dr. Nath has done 2 of my daughter's surgeries, but still I have major questions about TT and about "acromioplasty" that came before it. One of the things I have noticed is that it works for the mild cases. The more difficult cases don't really seem to respond to it.

And, I have a problem with the lack of information sharing. I have to believe that if it really were the "magic" it is purported to be, that he would share the info and take the credit that would be deserved.

As for making these decisions...they are difficult. And I think the major difficulty is that the decisions are life ALTERING, not life SAVING. Life saving is an easy one. We would all do anything to save the life of our child. As for life altering, well that is much murkier. How life altering will it be? what are the chances of it not working, making things worse? These are terrible choices we have to make. However, we must keep in mind that they are life ALTERING. And so we have the option to NOT DO ANYTHING. Keep up therapy. Or move to sports. The only surgery that really has a time frame attached is nerve grafting. Other than that....is earlier better? In some cases. Not in all. And if you have questions, then wait. Wait until the questions are answered. No one ever feels "good" about surgery. Even if it is life saving. Surgery is scary. But make these decisions on your own time frame. Go to every doctor you can. Clear out the clutter of who likes whom, and just listen to the information.

This will never be easy. The doctors will never agree. Don't expect them to. There is nothing cut and dried about this injury, nor is there anything cut and dried about its treatment. Sad, but true.

good luck,
claudia

Way off topic, but as long as Claudia started:
Matt's Dad and Claudia......Go White SOX!!!!!

Sierra's mom, my child gained exceptional ROM from the tt. Her external rotation is remarkable now.

For anyone who equates BPI surgery to cancer treatment, consider this. What if that "experimental drug" had less of a chance of saving your child's life than established treatments? Wouldn't you want to know that information? What if it resulted in the same odds for survival but had significant, life-altering side-effects? Wouldn't you want to know before choosing it? What if it increased odds of survival, but was riskier to administer?

Choosing surgery - and especially *which* surgery - is more than just "choosing to DO something". It is about making the best choice with the information available. No one here is criticizing those parents who choose surgery with Dr. Nath or anyone else. Given the same amount of information, some people are just going to be more comfortable with the risks and unknowns than others.

BUT... What I *am* fundamentally uncomfortable with and disturbed by is the lack of information, real debate and discussion in the medical community over some of the choices available. I absolutely, positively HATE this trend towards BPI treatment as "big business" with internet marketing campaigns, secrecy and concerns over market share eclipsing the need to share and increase medical understanding amongst all practitioners.

Wouldn't be better if at least *some* of the time and money put into press releases, fancy web pages and recruiting at events was instead put into attending conferences, sharing results (good *and* bad) and publishing results in order to increase the quality of treatment for all? That is how medical treatment should work, if the best interests of *all* the children (not just the paying customers) are really at the heart of it.

Kate

kate's post is a bash of a doctor and needs to be removed immediately

To answer the original posters question, my daughter had mod quad with Nath at the age of 2 and has not had any other surgeries.

I think these discussions are great, and I always learn something (mostly I learn there's so much more to learn, ha ha ha). I'm glad that these discussions can be had on these boards.

One thing that I did when we had to go through the surgery decision was get as much input from my daughter's neuro, PT, OT, and pediatrician as possible. I took lengthy notes at all our surgery appt's and then reviewed them, along with the specific surgery literature, with each of the other members of my daughter's team. I shared information, concerns, skepticism, general thoughts, specific issues, etc. with all of them.

I do not have a medical background and it helped me tremendously because these others brought up concerns and questions that frankly I would have never thought of. I felt I had a much, much, better understanding of the pros and cons as they specifically related to my daughter.