United Brachial Plexus Network, Inc.

This is insanity...not one of you, including myself is a doctor, so NONE of us should be speaking to this subject at all. Kate-yes, if intraoperative testing would have shown avulsions or complete ruptures..yes, she would have been grafted. It would have been her only chance.

As far as EARLY primary surgery with children with full ruptures and avulsions..yes, it is a NECESSITY. There is no other chance otherwise.

Is there even a "good" chance of recovering hand function with a graft...NO!I was TOLD THIS RIGHT BEFORE MY DAUGHTER'S SURGERY AT 4 MONTHS OF AGE BY THE BEST DOCTOR IN THE NATION...so argument will not help here. Is it worth a shot if the nerves are avulsed, yes. Is anything possible, yes, I believe that.

ENOUGH SAID. EVERYONE'S OPINION HERE IS MERELY THAT...AN OPINION. I SUGGEST YOU TALK TO YOUR DOCTORS. JUST MAKE SURE YOU'RE TALKING TO THE "RIGHT" DOCTOR. (YES, THAT MEANS WHAT MOST OF YOU ARE THINKING).

This is why I HATE using this board, everyone has to attack and get their 2 cents in...what I have to say to that is GO TO MEDICAL SCHOOL AND SPECALIZE IN BRACHIAL PLEXUS INJURIES AND THEN...AND ONLY THEN...SPEAK AS IF YOU ARE A DOCTOR ON THIS BOARD (Kate that's for you). READING A FEW (or a thousand) ARTICLES DOES NOT MAKE YOU AN EXPERT.

I'M DONE HERE...STICKING TO THE OTHER BOARD WHERE PEOPLE ARE RESPECTFUL OF OTHERS.

Take care everyone and best of luck to you all-

Lauren

I am not a doctor, but I have spent my career in biomedical research: working with side-by-side with surgeons and neurosurgeons, writing papers with them and researching what other doctors have published. I put a lot of stock in seeing what experts put in writing for judgement by their peers. No, quoting "experts" doesn't make me an expert, but it does give me more information than I would get from just talking to my own son's doctor.

This claim goes against what top specialists in BPI are now reporting:

"Is there even a "good" chance of recovering hand function with a graft...NO!I was TOLD THIS RIGHT BEFORE MY DAUGHTER'S SURGERY AT 4 MONTHS OF AGE BY THE BEST DOCTOR IN THE NATION".

It is so very important that this statement be challenged, because it is not based on the latest published evidence concerning brachial plexus palsy. BPI treatment is a rapidly evolving field... That is why it is so very important to get multiple opinions! Numerous experts in BPI treatment have now publicly declared that this belief is NOT TRUE!! I can't say that strongly enough: Parents out there with children who are globally injured and are considering primary surgery right now need to know there is HOPE!

My statements are based on publicized "opinions" of numerous specialists in the field (a few are listed below). Don't just take my word for it. Get the papers and read them for yourself (if you need help with that, email me). Email the authors (email addresses for authors are usually included in the paper) and ask them questions directly. Many parents have successfully consulted with top specialists across the country and around the globe this way.

Kate


References:

http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum
Pondaag W, Malessy MJ: Recovery of hand function following nerve grafting and transfer in obstetric brachial plexus lesions, Journal of Neurosurgery, 2006 Jul;105(1 Suppl):33-40

"CONCLUSIONS: Useful hand function was restored in 69% of the patients in the presented series in whom reanimation of the hand could be fully attributed to the surgical reconstruction. The authors conclude that restoration of hand function should be the first goal of nerve repair in infants with a flail arm caused by an OBPL, but that the optimal strategy for different types of lesion remains to be determined."

http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum
Haerle M, Gilbert A: Management of complete obstetric brachial plexus lesions. J Pediatr Orthop 24:194–200, 2004

From abstract: "the results at the level of the hand were encouraging, showing 75% useful results after 8 years, even in patients with avulsion injuries of the lower roots."

http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum
Hentz, Vincent R: Congenital brachial plexus exploration. Techniques in hand & upper extremity surgery [1089-3393] yr:2004 vol:8 iss:2 pg:58 -69

"Reconstructive goals for upper plexus injuries include shoulder and elbow control. The paramount goal for babies with global palsies is hand function. "

Kate-

Responding to you is definitely not worth my time. I am not the only one who feels this way about you...but I think you already know that.

Some of the most knowledgable people in the bpi community created their own board BPFF support board, to avoid these conversations with people like you.

Take care, good bye..I don't ever want you to speak to me or respond to my posts again.

Thanks

Oh, Lord... now it is the "and everyone else hates you, too, so there!" argument. What are we, in High School?

There are parents here trying to become the best informed they can to make very difficult decisions for their children. It makes me sad that they have to wade through so much nonsense to get information. This is Brachial Plexus Injury... the experts don't agree much of the time, so of course the parents won't either!

I don't expect anyone to automatically agree with me just because I said so, or pointed out some expert whom I agree with. That's why I provide references, so people can do their own research. Parents can look at the papers (again, email me if you need help with that), and if they already have a favorite doctor, can ask him/her about the opinions in them. Their doctor might very well say "hogwash" and that is that. But you can't ask if you don't know the questions.

We are all put in the position of having to go against some expert, somewhere, in nearly every decision we make for our children. But limiting the available information is NOT the way to solve that dillemma.

Kate

Lauren,

You actually invited Kate to respond on this subject. Now it turns out that Kate gave another answer than you expected. Your reaction is that she may not respond to your posts anymore. That's not fair to Kate.

I actually value the contributions of Kate very much. I think that she is very polite and certainly is not attacking anyone. I read her posts very carefully and she just using logical arguments.

I wish you lots of fun on the other messageboard where apparently only one opinion is allowed (yours I presume).

John

well said John!!!

Parents should know that the "intraoperative testing" I mentioned that I would like to see more information on is a new technique whereby Dr. Nath apparently stimulates the nerves through an incision in the armpit. I did not mean to imply that he was the only specialist who stimulates the nerves intraoperatively! He is doing it through a separate incision, while during traditional primary the nerves are tested at the roots (and sometimes on either side of neuromas).

I would not want anyone to get the impression that the only surgeon who tests the nerves intraoperatively, in order to determine their function prior to grafting, was Dr. Nath. That is definitely not true.

Kate

Within this topic, I sent a private message to Lauren. Lauren then chose without my permission to distribute it to a person that was then hurt. I feel at a complete lose to understand and appeal to some level of decency that private message should be kept as private.

That brachial plexus injury to that loved child is horrible; it is so obscure and controversial. Parents have their limitations as to what information they can learn, and to whom they will trust. This state is extremely difficult. We need to make some kind of reflection, some prayer, some promise to respect that fact.


dunloe

This should be a prime example to everyone about what should NOT occur on the boards. I did not mean for dunloe's e-mail (name) to get out and it was a HUGE mistake on my part.

Kate and I have reconciled and our communications here should show everyone what WE SHOULD NOT DO TO EACHOTHER.

Kate and I were both wrong here and both openly admit it.

So sorry to waste everyone's time with this mess.

Take care everyone,
Lauren

I'm sorry that I had not been able to post back in regards to everyone's replies but my grandmother passed away Saturday the day before Easter. It has been a long week.

I first would like to say thank you to everyone who posted and trying to help just another mother who is trying to make sure she is making the best decisions for her son.

Secondly, I was sad to see that my one question turned into angry replies and pointing fingers. One of the things I give thanks for is this Board and the wonderful people on it. We all have different stories and circumstance and not everything works for each child but I have enjoyed posting and having people just give me there experience and support. I hope that we can continue doing that..supporting each other and our innocent children by being open and accepting to everyone's opinions.

Once again, Thank you all for your input and support.

Maria
Amaru's mother (ROBPI) 5 months old