United Brachial Plexus Network, Inc.

Hi, I'm very new to this site. I am hoping someone can tell me if they have had any experience with obpi at the mayo clinic in rochester mn. we are wondering if we should have my daughters surgery at mayo or go to texas. any info or insight will be greatly appreciated


thanks,
Rivers

Hi Rivers and welcome to the message board.

I will admit to you that I am completely biased. Our own experience is that after taking Maia to some other East Coat clinics - we made the decision to go to TCH where Maia has had 3 surgeries. We are very pleased with all that they have been able to do for her. We also love our doctor. We do not have experience with the Mayo clinic.

Sometimes a hospital's reputation gets in the way and clouds the water of the reality of a specialty area. What I mean to say is that some hospitals may have a big name and be tops - but they still might not know anything about bpi's. And I'm not saying this about Mayo clinic in particular - although I don't know if this is true for them or not - but for example - our local Children's Hospital in Philly is the #1 childrens facility in the nation and they knew NOTHING about bpi's and gave us horrible input. So the research you do has to be specific to the bpi doctors and clinic within any particular facility.

You also have to give credence to the facility itself. For example my husband and I feel more comfortable taking our daughter to a specialized pediatric facility versus going to a regular hospital for any service of any kind. You gotta figure that everyone there 'knows' pediatrics and all the equipment, etc. is designed for pediatrics. Just a personal opinion we have.

My suggestion to you is to get more than one opinion.
Go to Mayo Clinic and you can send a video to TCH and I'd even choose one more if you want. Do your research on the backgrounds of the doctors and the clinics and then trust your gut.

Here's how to send a video to TCH - http://www.injurednewborn.com/maia/video.html. I believe that Dr. Waters at Boston Childrens takes videos as well. His information and others can be found on the home page of this site in the Medical Resources section. Also - here is a list of questions that may (or may not) be helpful http://www.injurednewborn.com/maia/drquestions.html.

Also - if you worry about airfare and hotels (to any city you would be traveling to for medical services) - you can get discounted or free airfare http://www.injurednewborn.com/maia/travel.html and medical discounts on hotels as well.

The other thing I want to say is that many people on this message board go to TCH and you may find one or two that I can think of off the top of my head go to Mayo - so you see, it's obvious that we're going to say good things about the facility we go to. So if we slant toward TCH it's not going to give you enough information about MAYO - which may be an EXCELLENT facility. I would highly suggest you call down there and see if they have a support group or names of families you can contact.

I hope you (or anyone) doesn't take offense to what I've said. I'm just trying to be realistic.

The key is to do your research, get more than one bpi specialist opinion and inevitably when all is said and done, trust your gut.

Good luck in making this very difficult decision.
-francine

http://www.injurednewborn.com

Hi,

I'd like to suggest that you (and anyone else struggling with this type of difficult situation) take a look at the Medical Resources list for more information on particular doctors/clinics to possibly help you gain some insight about the resources out there that are available. Here is the link:
http://ubpn.org/medicalresources/

I took a quick look and Dr. Bishop of Mayo has apparently been contacted to participate in the resource listing and has not responded to date (there is a link that lists all the doctors that have not responded). That is unfortunate, as people like yourself cannot then read about their experience and philosophy in order to feel more comfortable.

However, there are many other doctors listed, it is very interesting reading, I think, and may help you to formulate some questions to ask Mayo over the phone or however they choose to communicate.

Good luck with your decision.

Bridget

I am from Wisconsin I go to TCH. Just my personal preference though. Seems to me that our state has no clue about BPI. The ones that claim they do have little experience compared to TCH. They have seen thousands of patients and have done thousands of surgeries I just feel safer using someone with more experince.

Hi Rivers,
My son has had 2 surgeries at the Mayo Clinic. They were, however, both with doctors whom are no longer there.
John is 9 now and had surgery at 3 and 5 years old. Mayo's protocol now is to do the surgeries younger than when John was little. He had muscle transfer surgeries as opposed to nerve surgery.

I also agree that second opinions are a good idea.

If you havew any specific questions or want more info please feel free to email me and I'll be happy to talk with you.

Pam Wiehe
wiehe@attbi.com

Hi Rivers
I have no experience with the mayo clinic but
my daughter had primary surgery at Childrens Hospital of Iowa - which is a part of University of Iowa Hospital in Iowa City, Iowa. Our experience was great and her recovery has been excellent (I do not give all the credit for her recovery to the doctors all people will have different recovery regardless of the doctors). If you are interested in more information please email me.

Leslie
richs5@hotmail.com

We have lived and California and now live in Illinois and have chosen TCH. We even moved to Texas for a year so that traveling wasn't such a hardship. of course the decision for us was easy, however not very well research, since we were forced to get our son evaluated for primary and didn't know any better. I can tell you that we don't regret our decision at all. Dr. Laurent, Dr. Shenaq, Dr. Nath, Lisa Thompson, Lisa Davis and everyone else there is TERRIFIC!!!!!

Good Luck in making your decision !!!

I would be interested to know that...although my experience with Mayo clinic and the Mayo hospital in Arizona are superb for my needs and now all of my doctors are at the Mayo clinic, but I tried to find pediatric occupational therapists for my daughter there and they do not have any..
My personal preference has also been with Texas Childrens Hospital..I feel very comfortable there (under the circumstances of surgery).....
I think Mayo treats mostly adults . I would be very interested to see if anyone has experience with them. I never even thougth of them and yet we have Mayo Health Plan for our insurance(which on a side note, they have been wonderful in covering everything we have needed for our 2 1/2 year old daughter, they have not questioned anything or given us any hassles)....I have spoken to them many times and thanked them--instead of having to worry about referrals and the red tape, I am able to focus my energy on my daughter and her therapy.

Thanks,
Tami

My daughter had a severe brachial plexus injury in July 98. We live in Rochester so it would seem only natural for us to go there. We spent about 6 months working with them and ultimately ended up going to Texas when my daughter was 7 months for surgery. We have since been back to Texas 3 times so far. If you want to know more detail about our experience and how we came to the decision we did I can email you directly. I am not sure where you live but if you are in the area I would recommend having a consult with Dr Bishop to see what he has to say. I do not envy your position.. We struggled with it for some time.

Missy

Thank you for your response. I appreciate everyone who took the time to share with me their experiences and opinions. I would like to know more about your Mayo experience. We have already met with Bishop, Spinner and Chin. I think it is interesting that even after 2 meeting and a surgery scheduled (which we've since cancelled), I feel that we will more than likely end up in Texas. Did TCH give you a "plan" to follow-up with after surgery?

Thanks again,
Rivers