United Brachial Plexus Network, Inc.

Although I've sat through a clinic at TCH while holding my breath that my 5 mo. old baby would finally have some hope for her severe and permanent injury, I never thought of it as an assembly line. If TCH is criticized because they hold two clinic sessions a week and most of the children there are bpi those days, then so be it. The second time we did a clinic there in the new Critical Care Center it was vastly improved over our first visit; the quality of the program is constantly growing as is their expertise with the injury. Other times we've had regular doctor appts. in our bpi surgeon's office but, then again, we had to sit in a waiting room and wait our turn...just like in every other medical facility including our pediatrician's office. We did manage to avoid this "assembly line" system when our surgeon saw us on a Sunday afternoon (his day off, of all things!) because I wanted to see him the day before a scheduled surgery because I didn't think I could carry on a coherent conversation on the day of surgery. Lo and behold, surgery was cancelled! We've bumped into this surgeon (who has seen hundreds and hundreds of families) outside of his office, clinic and even hospital and, you know what? He remembers who we are. We're not just a number. We're a family.

The reason why so many TCH families post here is because we know one another, we've met in the hospital or clinic waiting room, and we've created a strong bond. We see one another at our glorious picnics (open to one and all) and we celebrate our children's progress and mourn the bad news.

I don't know why families who go to Virginia, Miami, NY, St. Louis, Indianapolis, Pittsburgh don't post here. Francine offers over and over to post their information and help with their own websites but it never happens. We speak with enthusiasm and probably communicate that, FOR US, TCH is the best bpi place. Others have had success at other facilities and, for them, that facility is the best, FOR THEM. Thank goodness there are a number of programs around the country. TCH doesn't have the market cornered on bpi surgeries but they do have the most vocal cheerleaders! My daughter had 2 avulsions and you wouldn't believe her progress in 3 years. I fully expect her to recover at least 75% of all function and this is a conservative expectation. TCH gave me hope when I didn't think we had any and the team there continues to inspire me to help others. Ra Ra!

Hi francine, I just wanted to tell what I thought about this board and what I read. I didn't mean to start any s..., according to you. I know you are very active in the boards and with your web page about your daughter. That is great. But I also have a whole lot of issues going on with MY daughter other than one of these that you have the time to totally focus your thoughts and energies to. If I only had to worry about one specific area and or problem, I could be more focused as well. If anyone chooses to visit TCH, that is great. If anyone wants to get information about lodging, Dr.'s, air fares, etc. I guess YOU are the person so it seems. But if you deciede to go elsewhere, you get slammed on the boards for stating your opinion. You emailed me at home and wanted to know our situation, etc. prior to this post of mine and now I want to say that the WAY YOU also conduct yourself and run MY opinion into the ground is not called for. I guess the band wagon rules around here, and this shows me also how other simple opinion posts can REALLY get under peoples nerves when they go a different direction than the norm. You need to relax and let other people post differently than you, and quit making this a CHALLENGE for francine. Have a Merry Christmas, Tracey

Hi Debbie. The Mayo Clinic is in Rochester Minnesota. The whole experience was very nice for our family. Since we live out of town and had to travel to get there, everyone was very helpful in coordinating all our appointments and Dr.'s, and they allowed extra time for unexpected things to be added into the visit if need be. They work new families into the schedule fairly rapidly and it is a smotth process of getting medical records, MRI scans to them. Our daughter seen Dr. William Shaughnessy and Dr. William Bishop. Dr. Shaughnessy is the pediatric orthopedic surgeon and Dr. William Bishop is the hand surgeon. Along with there individual visits, other Dr.'s also came along for consultation. Such as a plastic surgeon to minimize scarring if surgery was needed. All your questions were answered directly and in terms you could understand. By going there and getting our second opinion, it turned out for the best. Our other option was actually going to have our daughter lose range and function. In my opinion, we did what was right for our family and life style. I give the Mayo Clinic a high five and five stars for there input into our daughters unique situation. There are many hotels around the campus (within walking distance to all the hospitals). Look up the web site and you can find additional information. Good Luck with your second opinion!!

I think we have a attitude problem here. Its not right that people who are reciving treatment in TCH is the only group of people who participate in this board . I am from Bangladesh which is very far from US, Its in south east asia. I always recived a response whenever I posted here . People who recive treatment in hospitals other then TCH are equlaly welcome here to participate in the discussions. But what we are observing is personal attcks in this case on Fracine . Its very unfair to blame sombody who is always trying to help everbody . Lets hope this will have a happy ending. Let there be peace on the board.
Respectfully stated.

Munam

Tracey;
Thank you for information, and doctors at Mayo.
We will definetly go there for a second opinion.
I will call after xmas for an appt.
Don't feel offended for voicing your opinion. Everyone is entitled to one. That's what gives us freedom of choice. Everyone has there own thoughts.
That's what makes us unique. I hope peace, and happy thoughts for this Christmas and New Year's to all of us.

I just want to thank everyone that gives information,
on this board. Without everyone's input, I would be lost.
I want to thank Francine also for all her help.
Like Munam, I say Peace to everyone.

woooo, Nelly!! I have been posting to this board since Nov 9. and I will agree that the most vocal parents have been the ones that have chosen to take their children to TCH. Having said that I applaud FRANCINE for her dedication to this board, her website, the chatroom and her desire to help the newbies like myself. I however live in Florida and have chosen Dr. Grossman (whom I admire for his dedication to the children) and have posted his website a few times and emailed responses to those seeking his information. I also feel that those that have gone to TCH have never dissuaded me in my decision. I ask that we all remain objective and continue to use this forum for exchanging information and thus learning from each other. We all share a bond of doing whats best for our children and we all should use this forum to grow since we have a long path ahead of us. This has been the 2nd posting I have seen where parents with opposing views are at odds. The BPI experience has been overwhelming for all of us and there should be no reason to add to our stressful lives by taking it out on each other. Happy Holidays and may your faith in God give us all Wisdom, Strength and Love.

I haven't really ever posted about my BPI specialist before because I haven't come acrossed anyone living close enough (I am not sure how they deal with cases that are far away). And in truth I think I was a bit concerned that others might not like it... but thoes fears come out of myself. I feel awkward not going with the majority. I assumed that since I wasn't going to TCH people would think I was missing the mark! I thought they would tell me that I need to see a TCH doctor. I have found this to be untrue. I finally put my toe into the water and posted info about a clinic in New York that I wish I had contacted when my son was a few months old. No one seemed to mind! Then I posted a question about the surgeries that were a consideration for my son. I failed to mentioned that I had seen a BPI specalist. The first encouragement that came to me was to see one! She did not say call TCH. And although Francine has been offering links to her site for sometime I had only heard that within the past few weeks. Now after reading all of these posts I have my eyes wide open and realize people are willing to let me share and not going to be bothered by my swimming in a different direction. So basically what I am getting at here is I think my fears of posting about other BPI Clinics have been totally unfounded! I hope that I can get past worring about what other people think of me.I hope that none of this is offensive to anyone. I am hoping that by being open and honest we all can see each others perspectives.
Always,
Kristie