United Brachial Plexus Network, Inc.

I just wanted to say that it seems like the majority of families that come on these boards are mainly directed to Texas Childrens Hospital, thus giving them the "Best and Only" for this brachial plexus injury and future surgeries if need be. Recently we took our daughter to Mayo Clinic in Rochester, where we recieved excellant service, wonderful Dr.'s who acknowledged our daughters specific problems, and a very educated, helpful staff. Please remember that there are other hospitals who have the same credentials, minus the "assembly line" affect which it seems like in some of these posts. Sometimes you have to remind people of other choices.

Tracey, with all due respect, when someone comes on here and says that they are new and how do they find a specialist - I ask them where they are from so that others can post if there is someone close to them. We cannot help that a good portion of us go to TCH - they happen to be the biggest clinic in the nation.

About your comment about assembly line. I do take offense to this comment - because this is just not true. We were just discussing how the protocols differ between one child's instructions and anothers for the same surgery. We ALWAYS tell people to ask their doctor about specific instructions because each child is different. Just because they do so many surgeries - doesn't mean that it's an assembly line. Each child is different, each child's injury is different and each child gets a different surgical repair.

Just today I was in my car as I drove Maia to 3 separate therapy appointments - yes, even though she is post surgery she still has therapy - and I started to cry thinking about how grateful I am that these surgeons are so devoted to our children. And how they keep on learning and trying to make things better for them. They are cutting edge over there - constantly striving to give our children a better quality of life.
I don't have any clue what I can do to pay them back for this.

Now about the Mayo clinic. I have offered this for the last year and will keep on offering it. If anyone wants to set up a web page about their experience in another hospital - just write it up and send me the text and the pictures, and I will put up a page and link it to Maia's page. Mary (Sarah's mom) already did it and she's the only one. If you want to announce how great Mayo is - then do it. I will help you with this. How else will anyone know about that clinic unless someone stands up and talks about it.

So there's your challenge.

I'll make you a deal - I'll help you with the website and put it up for you, but in return, please don't talk down about a place that's given my daughter a chance at a better life.

respectfully stated,
francine

Tracey, I don't know if you've been on the boards in the past when this topic has come up various times. I agree that the majority of the people who post here go to TCH and I don't know of any reason other than that it has the largest and most experienced BP clinic in the country. There are people here who post about other clinics too, but there aren't as many posts. Who are you directing this message to? Are you directing it to people who have gone to places other than TCH to come forward and share more about their experiences? Or are you directing it to the people who have gone to TCH and asking that we don't share our experiences? You have found a BP clinic that you are happy with and I think it's great that you posted about that. I'm very happy for you. I know that TCH is not the only place to go to, but it's the place that we've chosen to go to for Nicole's care. We've also gotten opinions at another BP clinic that is very good, but for various reasons have selected TCH for the surgeries. I know that for me personally, while I might recommend that someone get in touch with TCH I also recommend that they get more than one opinion in order to make a well informed opinion. In fact, I have noticed that many people here have gotten more than one opinion as well. Rather than assuming I know what you mean, I would like to ask you what you mean by your "assembly line" comment. If it is TCH you are referring to, then would you please share your basis for this comment? Also, I would like to ask that while you're speaking very highly of the Mayo Clinic, of what other choices are you reminding people? I believe that it is not necessary to speak down of one place in order to make another place look good. If it is good, then it is good, regardless of how other clincs are. Respecfully stated, Tina

TCH is the only hospital I know that offers free video consultations. For a new parent this is a life line. For me not knowing of any other specialists in the area it was wonderful to have them as a resource. They will e-mail and call you at home even on Sunday to answer questions. It would be remiss of anyone not to mention them as a possible resource. In the past 22 months I have seen many, many people post about other specialists as well. I make sure to do so as well. I use TCH as a second opinion as I have now found Dr. Waters in Boston but in those first scary, scary months knowing I could call Lisa or e-mail Dr. Nath was incredible for me. People have to share what has worked for them and it is the person sharing responsiblity to share what they know and each person's choice to research and get other opinions. It is really not fair to fault people for sharing their positive experience. I am also sleep deprived so this is meant very respectfully also,
Carole

My daughter has also had this since birth and I have done all the range of motion, OT, PT, e-stim, pool therapy, etc. And I am still doing it today. We also knew nothing about these injuries, and had to do our own research. My comment was not directed as a put down, slam, whatever or however it was read. I was only saying that it seems like TCH is the only place that is talked about on here whenever I do find the time to come and see the boards. It's wonderful that people can find the time, resources, find others to care for other children and maintain somewhat normal for them as well. I would like to see more people telling there experiences with other places. Everyone is entitled to there opinion, and all I was doing was stating mine. I am sure there are wonderful Dr.'s throughout the United States, who would like to have there clinics mentioned as well. By assembly line, I mean to read "you sit among others and wait for your child to be evaluated when its there turn?" Sounds to me like an assembly line. I also want to do the best for my child, and I know I made the right one. Just because one doesn't jump on the band wagon and fly down to TCH and stay .... means I am any less of a parent? I want to know that someone isn't performing needless surgery and have my daughter "just be a number" in the waiting room. Forgive me for being different. Of all places, you would think different wouldn't be judged here.

I am from Wisconsin, and would like to know the doctors names that deal with bpi. I would like to get a second opinion.
Thanks
Debbie

I am not sure either why people who have choosen other places for their child have not "shared" here. I know of a few people that have gone to other drs and had surgery, but I never see them post here. It would be nice to hear their comments and experiences. Oh well. PS--Is the Rochester clinic in New York?

I think what she means by assembly line is a practice carried out in many teaching hospitals throughout the USA. They put the kids in rooms and the doctors and their students go from room to room. I don't think this means a child gets a lesser value of care. It is pretty common to carry out clinic procedures this way for logistics. I feel that if my son's visit will help to train more people to be specialists in this area then it is a good practice. Of course all people are different and may want more of a private conference but I just feel more training is needed. It is good there are places closer to others but we found TCH closest to us. There aren't enough specialist in the country to go around.
Peace! Have a happy holiday!!!
T.

I would really like to know WHO and WHEN ANYONE said YOU or ANYONE ELSE was less of a parent for not going to TCH. I've been on here for over three years and there's been a few times where major bullshit has been thrown around but never have I seen this kind of thing on here.

What I do see is people sharing what they've done for their children. That's all they know and CAN share. And yes - the majority go to TCH - because it is the biggest clinic. How can that be avoided, when they are seeing thousands of bpi children versus 10, 50 or 250.

The purpose of me asking people to put up a website about their other experiences is so that we can attract more of the people who decide to go to other places, here. If they don't know this place exists then how will the conversation EVER get balanced?

We have a lot of Dr. Water's patients parents on here - so somebody must be telling them about this site. So Tracey- are you going to go to Mayo Clinic and make up a poster or bring some UBPN brochures there and ask the doctors to hand them out to patients?

How about all you folks who go to other places - what are you all actively doing to bring people into this forum?? You can't blame those who go to TCH for the imbalance. We're already here. Where's everyone else?

And finally, do you think TCH performs needless surgeries and that our kids are only numbers? What are you basing this on? Have you been there? Has your child been treated like a number? Have you agreed to have a needless surgery there? I'd like to know what you are basing this comment on. My daughter has never had a needless surgery and we've NEVER been treated like a number. As a matter of fact, it's easier for me to contact TCH and get an answer then it is to contact my own primary physician who is 10 minutes away!

So, Tracey and anyone else - if you feel that this message board is too one sided - then become proactive and change it. Put the effort out and get more people to come in here and exchange information. And if you're not going to put the effort out then don't complain about it.

To Tracey,
Hi. I was not very clear in the last email above.
I would like to know the names of the doctors in Rochester, MN. For we are 5-6 hours away from there.
It would be nice to get a second opinion.

To Francine, I am grateful that there is a TCH, in the US I have sent them a tape of my son for them
to give me a 3rd opinion.

It is nice to have so many opportunities out there.
When my son was born, there was none, that dealt with brachial plexus injuries. This messageboard, has made me felt like part of a family. With people that have been there, and done that. It is a good feeling. Good communication for all.
Merry Christmas,
Debbie