United Brachial Plexus Network, Inc.

luvmykidz, anything that is new needs time to have long term outcomes. Even the smallest thing needs time to see the final outcome years down the road. Again it depends on the indivual as well, as Peggy said. It is one of those things that you have to follow your gut on. You need to have faith in your docotr 150% or might want to check with other docs. Me personally if I were not happy with my surgeon and what he said, I would no longer see him! That is a scary thoguht for me!

Just my two cents.

COurt

lovemykidz,

How can you question other parents decisions on surgeries that they have decided to have for their children? I can tell you that my son had this procedure with Dr. Nath 3 weeks ago and for me to come on this site and read your post is really hurtful. My family put alot of thought and prayer into our decision to have this surgery for our son. We decided to go ahead with it because 1. we trust Dr. Nath 2. Peyton's shoulder joint is very deformed, he had bony overgrowth that was hindering function and needed to be removed 3. We have talked with several parents who went ahead with this procedure and they have been very satisfied.

I thought that this board was for support, if you don't agree with someone's decision to go ahead with a surgery I think you should take others feelings into consideration before you spew your opinions. I am sure that like my family, every family who has went through with this procedure has thought long and hard about it before they went ahead with it. I know what is right for my child as I am sure you know what is right for your child. I would never come on this website and post or question your decision or anyone else's decision to go through or not go through with a particular surgery. How are we going to have long term research on this surgery if no one has it done? I believe this was the right thing for my child.

lovemykidz - I agree with you! I do not think that you in any way were not supportive - just stating your feelings and fears. I also have fears about new surgeries (and old ones!) It is great for all of us to just share our feelings and perspectives - kind of just all talk it out - and I do not see that anyone was saying "do it vs don't do it". What feels right for one child, injury, family, etc.. might not be what is right for another one - but sharing our feelings is so helpful,
Christy

Thanks for the support, Christy. Marnie, I am afraid that you mistook what I was saying. I was in no way being disrespectul towards or judging anyone that has chosen this prodecure for their child. I was under the impression that these boards were a place of learning and growth. The beautiful thing is that we do not have to agree, we just need to disagree respectfully. I agree that you must perfrom the procedure in order to do research, what makes me uncomfortable is the scale on which the research is being done. When you perform a controlled research study, you perform the prodecure on a select few and watch how things go. That is not being done as far as I can see, please correct me if I am wrong. From what I read and hear, this is being done a lot. I am not saying that this is a bad procedure, what I am saying is that we don't know what this does long term. Short term, it looks great, but I just worry about what will happen in ten or twenty years. What actually worries me more than the long terms affects, is the fact that no other BPI Specialist will perform this procedure. I truly hope that this is just really cutting edge technology and that I am worried for nothing. This procedure is great even up to age 12, correct? My child is still young, there is time to gather information.

You have a perfect right to express your feelings, and
please don't let anyone keep you from it. That is what
this board is all about. I feel that challenges such as
that of Marnie should not be posted as it shows a degree of hostility. YES, everyone has their own concerns and thank you UBPN for having a place to
express these!!!

Grandma

I believe it's very important for people to know all the facts about a particular surgery... that is a big part of the decision process. It's important for parents to be aware about potential downsides and criticisms about the Triangle Tilt or any other surgery or treatment. It's then up to the parent to decide if they agree or disagree with the various positions on it's effectiveness, long-term data, etc. But it's impossible to make an informed decision if you aren't aware of the fact that there are parents and doctors who doubt this procedure! If you already know all the potential criticisms, though, when they come up you can say "yeah, I know about that, but I'm confident my surgeon has adequately addressed those concerns with me."

We chose a different surgery for our son - the anterior capsule release - and it too is somewhat controversial within the BPI specialist community. There are some BPI specialists who do not believe it is the right thing to do (and some who do). It is relatively new, so there are not 10/20/30 year studies on it. We even had to make a difficult choice between two doctors who do the surgery quite differently, with one insisting that the way we ended up having it done would not be effective (only time will tell if he was right). If I hadn't known about these "controversies" over this procedure, hearing them, as I did, expressed by another BPI specialist in Baltimore would have been devastating to me. BUT... I already knew about potential criticisms, and felt comfortable our surgeon had adequately addressed them. BTW, so far he seems to have been dead-on and the results from the capsule release have been truly amazing.

Support is one of the goals of these boards. But education is another very important one. Sometimes there ends up being a very real conflict-of-interest between supporting parents who have already chosen a particular path and informing parents who are still trying to decipher the maze of choices. Discussing the possible downsides of any treatment can be really hard on the parents who have already made their decision, but it is a very important part of the educational goal of these boards.

Kate

It's a hard place for all of us to be...the maze of decisions as Kate calls it. I can appreciate all the posts I have read here today and I too hope that this turns out to be the miricle surgery for OBPI! The answers are never clear for me when it comes to OBPI and I am think they never will be. I just hope that when my daughter grows up she will be as amazing as all the adult OBPI I have met here on this message board!!

Best Wishes to all!

Lenni

BTW-- I still cannot Log-In to my account! Sorry...

Lenni
I could not log on for the longest time when I used my newer computer.
I discovered that I had to turn off my firewall sign (log) in and it worked!
I checked the box to allow auto log on when I come to the site.
Thanks for the kind words about adult/obpi.
We tend to be very strong but the way I figure it OBPI made me stronger.

Kath

luvmykids - i agree with you 150%. i also don't find anything you said slashing at parents that have had their children go thru with the surgery. it was suggested to us, by nath, to have the surgery and that is why i went for a 2nd and pretty soon, 3rd opinion.

iluvmykidz - i agree with you and feel you have said nothing wrong, only stated facts. it's up to the parents and their intuition to decide what is best for them.