United Brachial Plexus Network, Inc.

I have been researching and talking to other parents recently about this and can't help but question. I hate to title this message this, it makes me cringe since my child has already had 2 major surgeries and possibly will have more, but do I need to face the hard facts. Are a lot of these surgeries for our kids still very experimental in nature? I just wish we would be told this by our doctors up front. If doctors are basing their surgeries on outcome data and true success (which some appear not to be), then why do many have different opinions. Why does Gilbert, Waters, etc. say NO mod quad before 2 but Nath is doing them at 12 mths. now? Why does Clarke say no to bicep lengthening and agrees with some other specialists that you will have residual weakness after cutting the bicep that will not fully return, and that contractures often reoccur years later because the intial imbalance is still existing? I go to TCH because I feel they are the best and have the most experience, but also wonder if the true objective research isn't being done maybe they don't know either. I get confused knowing others are doing research and question why my doctors aren't. I have tried to ask and get the run around. If surgeries aren't being researched and outcomes aren't being sceintifically and objectively researched is it more like experimental surgery with our children? Sounds awful, but I guess it happens in medicine all the time. What are your thoughts? And if you have any information that I can't seem to locate please share.

It is a perfectly valid question and one should always ask lots of questions before undergoing surgery.

The mod quad is based upon surgeries that have been done for many decades, involving tendon and muscle releases and transfers and nerve decompressions and neurolysis. If you will browse through the titles in the bibliography on this site, you will see that there is research on these surgeries that go back for a long time. I myself had muscle and tendon transfers on my shoulder back in the 1950's at Cincinnati Children's Hospital. It made a big difference in my life at the age of 9. I have also had the mod quad about a year and a half ago and gained significant new range of motion.

Here's the url for the bibliography:
http://ubpn.org/medicalresources/bibindex.html

There are lots of differences between the surgeries done by the various bpi specialists, timing is one of them. One of the reasons why TCH has been doing the mod quad at an early age is to try to help the formation of the glenohumeral joint. Dr. Waters at Boston has also been at the forefront of research in this area and has published some significant publications on this topic.

Nancy

Hi TerriAnn,

Just so you know your not alone in your thoughts and feelings. I have felt this way for a long long time, but what I have learned since Michael's birth is regardless of where we take our children the bottom line will always be... that we made our choices with what information was given and it was truely in the best intrest of our child. You can't beat yourself up for loving your child.

Patty

(don't mean to offend anyone - just voicing a different opinion with some religious content mixed in as well - so feel warned)

I believe that progress comes to a halt when you get bogged down in the studies. I also don't understand studies when each child is so different and each injury is so different, and each child's rate of recovery is different and each child's metabolism is so different and each child's therapy is different and each child's response to growth hormones are different and each child's response to growth spurts is different and how the nerve grafts are done (if they are done) is different, and how they will "take" or not is not guaranteed and each child's soul purpose on earth is different . See why I don't believe in studies?

I've always made my decisions on things by researching the concepts, examining the logic and trusting my gut (which I believe is my direct conversation with God).

respectfully,
francine

There was one more controversial statement I wanted to make...

isn't each surgery experimental? isn't each time a surgeon opens up your child for anything an experiment? how do they know what they will find inside? how do they know that they can fix it? how do they know that they can fix it well? how do you know that the surgeons hand won't slip?

I think each time is an experiment and a grand lesson in trust.

still said with respect,
francine

oh gosh yet more to add...

Gilbert said NO to capsulodesis. He said that they never touch the capsule - the ONLY thing they will do is release the anterior musculature. Well Maia's anterior musculature was already released - so what gives with that? I knew one thing however - Maia was in severe pain from her dislocation and something had to be done. An osteotomy - what is the most accepted bpi surgery - was NOT an answer to help her out in pain. Her bone had to be put back and sewed in and there was only ONE doctor out there willing to do that and confident enough to do that. The answer was extremely clear that capsulodesis is what Maia needed. And thank God we did it. Shoulder pain is gone since.

I think that the docs at TCH have a vision that's not set aside in fear...even at the risk of not following the "herd".

still being respectful...
-francine

I feel that studies are crucial. As a parent I would much rather get some sort of estimated outcome - even given the different injuries, ages, and so on - just some general knowledge of what children who have had this surgery were able to do afterwards and how long were they able to do this before the next surgery was recommended. Were there things that were no longer possible to achieve once certain muscles were cut or moved? I realize that so many objectives factor in to the outcome of any surgical vs non surgical result - - but just some type of a general basis to go on - like what happens with the majority with this type of injury after this type of surgery.... I wonder how many parents were told before surgery that their children might not be able to put their hand on their hip after surgery or reach behind their back.... That the surgery may lessen the possibility of achieving this movement.... Two years ago when I first started posting and my child was eight - the majority on this board could not understand why I did not want my child to have the mod quad or bicep lengthening. I do try to trust my gut feeling - but my gut has let me down before. I had felt at the time that these surgeries were experimental and might not help my daughter even though they were recommended by the docs at TCH. Two years later I am thankful about the choices we made.. I feel for parents who just get done with a particular surgery and then come to the board to read that two weeks later this same surgery is now being done differently because they found the other way wasn't working as well.... I know that I often wonder if we have made or are making the right decision about surgery, but at the same time I'm hoping that a few years down the road the answers will be more obvious and we can make decisions from there. What scares me is the amount of confidence a doctor might seem to have in a surgery for your child - when there are so many other individual factors to consider. It isn't across the board for all - - but a general guideline of expectations is very helpful.
Christy

Studies are extremely important. It IS the reason why I still have Michael today. If it weren't for the parents of other children who have gone before my son the doctors of today wouldn't have any idea on the types, combinations and right down to how to give the drugs. If I ever lost Michael I know in my heart that he played a MAJOR role in providing a wealth of information for the next child and hopefully the next step to a cure. This doesn't only apply to cancer treatment. Studies are an invalueable source for a cure to anything. Oneday our childrens BPI surgeries
will lead to a 100% recovery and we should take pride in knowing our children were a part of that. Knowledge is power.

Patty

"Studies" - that is a big word really...of course they are studying this with every single child...and each child becomes part of the studies they are working on. I think that "historical input" is very valuable - they keep on learning from everything they do and they build on it. But, in the meantime...should we not be taking our kids for treatment because the studies are incomplete?

I think of the 'study' run by Gilbert and Tassin and quite frankly I get nauseated when I think about it. Two villages - one village's kids being treated surgically and the other village not being treated. So - one doctor trusts in his treatment and the other doctor basically tries to disprove it...so kids went without treatment and did poorly. So I wonder - how could this doctor sleep at night? OK - yes so our kids benefitted by this because it proved to the world that surgical repairs would make a difference... but we learned this at the COST of what?these children's lives in that other village. (and quite frankly - why didn't they just get rid of the doctors who were injuring all those kids???) See why I have a problem with this?

What about the firsts... sometimes I wonder - who would take their child to be the "FIRST" or even the "TENTH" - what guts it takes to do that. Some parent somewhere has to make a decision that whatever they are proposing sounds like it will work and to go for it.

And what about the mod quads that were done 10 years ago (were there any?)-- hasn't the procedure changed in so many years and haven't their skills been 'honed' in this time frame, too? And what about the other modalities that are being done concurrently? (estim/bracing/splinting/botox) - won't this muddy the longevity of the studies?

So I guess- I'm just a simple-minded mom who wants the best possible outcome for my child. I can't even understand half of the articles I have read and can't fake it either - the scientific language and formats just give me a giant headache. I've had to learn a whole new language just to understand brachial plexus injuries. I just think that for me, I research to the level in which I can mentally and intellectually handle it and the rest - well I rely on trust and faith and God to help me make my decisions. Some of it will work out, and some of it won't. It won't become evident for another 20 or 40 years. It's the best I can do.

still respectfully,
francine