United Brachial Plexus Network, Inc.

YOU GO GIRL!!!

Sali,
I certainly hope you feel better. Practice what YOU preach and do not ever assume my children are less important to me than anything else. What gives you or anyone the right to attack me for my OPINIONS, I thought we were allowed to share them. Well, you may have taken my opinion personally, but your thread was a direct attack on my charachter and my opinions and if it is an effort or anyone's planned effort to drive me away, I will not give you that satisfaction. Do me a favor, if you can't handle my opinion, don't read threads with my name attached, and don't make accusations and assumptions into what I wrote, twisting it to your pleasure, ask me politely to clarify it without attacking me. I would be happy to. Oh also, don't address my point of view either.

My head was already starting to spin after thinking about all this experimental surgery stuff, so forgive me for passing on the previous discussions. I just hope we can all try to understand one another and support each other. I hate to see how words often get in the way, especially when they are misinterpreted. So here it goes......I also share the opinion that true blue research is CRUCIAL! It is essential in the development of any medical treatment. For me, there is no way around it. Research is instrumental in developing the best treatment protocol for our children. It is the only way to truly learn what is really working for our children and what will stand the test of time. It would be a true SHAME if a child was not given the opportunity for treatment that appeared to be beneficial just because the research hasn't been done to show the outcomes of surgery, but it would also be horrific to put a child through unnecessary surgery or surgery that in the long-term may actually have more of a negative impact on the child. That idea is beyond frightening to me. Medicine MUST go forward, but shouldn't research be going forward with it? I guess I don't understand why it is not, at least why TCH has not actively participated in research regarding surgical outcomes since 1994, especially with their access to students at Baylor. As a parent, I feel that we should have access to information and that research should be actively conducted and published on the outcome results of all these surgeries. These are HUGE decisions we are having to make as parents, and some of us aren't blessed with guts that have always led us in the right direction (I thought I KNEW in my heart that I had the right person delivering my baby - WRONG!!!) I know this will probably upset someone, and please it really is the last thing I want to do, but personally I struggle with hearing so much about how different the injuries are. Yes, they are extremely individual, however, research HAS been done for YEARS and very good research continues to be done by BPI specialists around the world. To me, the fact that the injuries can vary so greatly doesn't justify the lack of research. Our children are often told they need surgery or surgeries within a few minutes of visual observation. If the injuries were so uniquely individual that they could not be studied then I don't think this would be a possibility. And if the injuries are so different, then without research how do they know which kids really need the surgery and which ones don't. I think they see a lot of children and they see a lot of similarities and trends with the injuries. And the results/outcomes of a lot of the surgeries often do share a lot of similarities, especially with the secondary surgeries. Even thinking of my father who has Parkinson's Disease and my cousin who fought a rare form of cancer, and the list goes on...there are many diseases, etc. where individuals conditions vary greatly, yet research has offered tremendous amounts of information that has significantly impacted the treatment of all these individuals. Learning from your patients is VERY different from objectively doing research with control groups, etc. And if so many children differ in their injuries than how can they truly learn from them and change protocols for ALL children in general. It seems that doing research and objectively creating groups of various injury severity, etc. would lead to more learning. And I struggle with the idea that other doctors don't support some of the surgical procedures because of fear? Part of me can comprehend that as a possibility but then part of me says if they are researching things then aren't they basing their decision on something of some substance? Reading these posts and thinking, I am also having a hard time with the idea that each surgery is experimental. If they are truly experimental in nature than why are so many of us told with great confidence the results that are child will have from the surgery. The whole village concept just makes me cringe. Everyone should be entitled to the best treatment available and to deny that for the sake of research is a very scary thought, but without research how do we know what that best treatment really is? I have met several people who have decided against surgery recommendations. Wouldn't these be great groups to study and follow? I have heard that others out there are collaborating to look into just that - suggesting the possibility that some of these kids are doing just as well without surgery as those who have had it. Of course, they would have to take the injuries, limitations, etc. into account, so they were comparing more equal groups. Like Patty mentioned, I too want other children in the future to benefit from what my child has gone through! I feel passionate about that. If I decide for a surgery or against one, and if I make the wrong or right decision, at least if people are conducting research my son can contribute in a positive way. And Dawn mentioned that Dr. Nath said they don't have enough data to show the correlation between size of glenoid and success of surgery, and why not? Just think of how many kids TCH sees and just how much their research could contribute to these children. Glenoid size and surgery outcome should be able to be correlated in some way. Sorry, if I sound frustrated but that is because I am. None of us should be faced with all these huge decisions for our children, it sucks!!! It is just so hard when you have a doctor on the forefront of research in the area of glenohumeral joint development, who is very pleased with what he sees and another TOP doctor who is not doing research who says surgery is needed. And why is dislocation such a big concern at one institution but several other doctors say it is not usually an issue? These are people who are doing research studies and following the joint development. These are people who are getting awesome info. from MRI's done with specific protocols, like Waters, Kozin and others. I personally, would feel much better if my child's provider was also involved in research. There is tremendous value in it and I think it is important that we recognize what it truly means for the treatment of our children and future children. This leads me to another question. I have heard in the past that doctors such as Gilbert, Waters, Grossman, Hentz, Clarke, etc. are creating a data base and collaborating research efforts to better the treatment for children with BPI. I don't know if this is gossip or if it is true, but I have heard that TCH is the only BPI specialists not involved in this? Does anyone know if this is really true? And if so, why? I am confused and not sure what to make of it.

Francine, do you know why Gilbert doesn't do the caps surgery or why he wouldn't in your daughters case? He recently just emailed me and shared that he would NOT do the bicep lengthening on my son, not at this age and that he rarely does them. It is maddening to me!!!! These doctors have to base their opinions on something, but I would feel much better having objective research versus personal opinions.

Please forgive all of my ramblings. I am just trying to learn, question and make the best decisions for my child. My loyalty is not to one particular doctor or institution, my loyalty lies with my child. And in all honesty, right now I am questioning ALL doctors and don't know who to believe. I am thinking I will just flip a coin or go to a psychic! (ha!)

Ok, from what I have seen so far, you gals are very long-winded! I still never got to see about the little one yet, nosey little me. I see this as a very interesting topic and I have been trying to keep up with it the last few days. I don't get how someone can live and breathe this and be so mad. I look at my daughter and praise God that she is here in my arms for me to love and care for. I praise the Lord that she is healty and so darn beautiful. So what if her little arm isn't like everyone else? Some wear glasses, some wear braces, some walk with a limp, and some look 'average'! This injury, as horrible as it is for some, is what makes your kid original! I personally think that originality is what the world needs. People obsess about what they look like and what the other looks like so often you skip the inside of it all. You ever stepped back and asked your kid how they feel about their arm? Because I sure will ask my little one the moment that she is able to communicate with me. IF it ever came up that my baby was suggested to have surgery for her injury, I honestly believe that I would pass it up until SHE can decide. Sorry if I have offended anyone. Better get to the baby. Ashlie

Elisa -

he said that dislocations are caused by contractures of the anterior muscles - period. Release the anterior muscle and it all goes away. This was NOT the case in Maia's case. Her anterior muscles were already released in a previous surgery. They did not have a contracture - they seemed tight - yes indeed -BUT as soon as the bone was put back in place - they were no longer tight. So it was the bone out of place that was pulling on the muscle and making it seem tight.

We had NO CHOICE but to do this surgery because Maia was in daily terrible pain. She was grinding bone to bone and it was evident. I am VERY grateful that Dr. Nath looked beyond what his colleagues were doing to offer Maia a chance to put the bone back in and get out of pain. So far so good.

I thought over the summer she got re-dislocated but Dr. Nath showed me what to look for - severe internal rotation - and she does not have that...so it's holding up nicely. I think that some doctor's are scared away of doing certain things - don't know why but they are. I'm just grateful that TCH is so innovative in trying to help the kids out.

-francine

Elisa
I may be able to address one or two of the points you raised in your thread.
You ask about the collaberation of the bpi specialists around the world on the various treatments for children.
This is correct,that was the Internaitonal Symposium of BPI specialists which I attended in Paris in january of this year. There were 120 of them ( I think about that number) who all presented the current research they were working on, for discussion by their peers. They were all keen to share with each other.
I don't think Dr Nath was there for that day of the symposium, but I could be mistaken on that point.
You mention that Professor Gilbert e mailed you and said he wouldn't do caps surgery on your son, but you feel frustrated when he wouldn't say why.
I am not sure about this, so forgive if if I am wrong, but over here in Europe ( I don't know about the states so forgive me if I am making presumptions) all medical professionals in any field of medicine are prohibited from making derogatory comments about the practices of another Doctor, so it might be that prof Gilbert doesn't agree that the caps surgery would be a useful surgery, but he wouldn't say that for fear of offending the surgeons who do perform it.
Unless he thought it was downright negligent, he would be unlikely to say anything about it.
Or alternatively, because it is not a surgery commonly performed in Europe ( or the parts of Europe I am living in) then he simply may not know much about it
(although that seems unlikely too LOL)
You are quite right that your loyalty is to your child and it's always a difficult decision to make when surgery is advised.
Whenever Gavin has had surgery, I have asked the surgeon straight out how many they have performed and what their success rate is and also if they can put me in touch with other parents who have had the surgery for their child.
I've been lucky, as no-one has refused yet. LoL
Another thought has just struck me as I write this thread that Gavin has had 3 surgeries and each was performed by a different Doctor - I guess you could call that shopping around LOL
although that's just the way it's turned out,
don't know if this has helped at all, and I hope I haven't caused offence to anyone,
Karen

Karen - I can't speak for Gilbert but I can speak about my experience in communicating with him. Gilbert is a man of few words in an email. He does not want to comment that much especially when he has not examined the child himself. Maybe THAT's why he didn't want to discuss it that much. I believe he has GREAT respect for the doctors at TCH - he's the one that got them started and set up the clinic. But I also believe that TCH docs are trendsetters - moving fast to find many ways to help the children - and the other guys take a more laid back approach. USA docs are now learning about caps and more of them are beginning to see its benefit and beginning to do it. It could be a matter of 'let the other guys work out all the bugs' scenerio.

Pulling from previous conversations with people who were at the international symposium I can say that I believe TCH is not too well accepted in the international BPI community but what the heck, other people's opinions should not be the sole way I judge an institution-
that said- I totally agree and believe what Fran originally posted about studies...I also agree with what Rich said so...no profound conclusion from me-
IF I thought that Texas was "researching" with their surgeries it wouldnt bother me, however if I thought they were not publishing and sharing their research in a non biased objective manner THAT would bother me, ie open disclosure to parents about what might go wrong and also...a pet peeve of mine, the "valid" happy lives of many many BPinjured men and women/boys and girls, real live people-(to pull from Jenny's line of thinking above) who have pain free happy well recovered lives without surgery, maybe their arms are shorter, maybe they have impaired function, maybe they have excellant recovery or maybe they are completely FUnCTionless...but they are happy with the way they are ...and painfree and...well I think happy says it all- How do we know that surgeries are not the source of inacceptance and UNhappiness and pain? I want to input also that I ask and infer the same things about NOT having surgery too- buth sides should be addressed(in marys world...)
oh and it bugged me when someone made a comment that the she believed the belief that "an arm is just an arm "is "ridiculous", I respect her belief, and I also respect her emphasis and strong opinion, as I hope she will respect mine in the opposite, that for me, ITS JUST AN ARM...
I strongly feel that the only disability is attitude.
I MOSTLY WANT TO SAY I FEEL GRACE READING THIS EXCHANGE, AND LOVE , AND RESPECT-
THANKYOU ALL THAT HAVE POSTED this has been a very informative and healthy exchange in my opinion.

Hi Karen,

Thanks for the input. Sorry, if my post was confusing. My head was just spinning as I wrote it, as you can tell. What I meant to say was that Gilbert said no to bicep lengthening. Actually, he was very adamant about it and stated he RARELY does the surgery and would NEVER do it at my son's age. You are right, I think he was professional in not saying anything negative about any other opinions, however, his email was clear and strong on his opinion. I want to ask why, and probably will, but I have heard other opinions from several others also and I know why they are often against it. Just so darn confusing!