United Brachial Plexus Network, Inc.

My son is being seen by the clinic on the 16th and 17th. I know most of the tests that are performed....but what can we expect from the doctors? If they are to perform surgery, do they do it immediately or do you come back in a month or so? My son will be three months out from his injury on the 26th of December. Is it possible they would perform surgery this soon if no nerve signals are found? Can others please share their experiences? Will anyone else be there those days?
Thank you all again for all your help and thank you to UBPN for the wealth of information on here!

We came to the Mayo Clinic when my daughter was 5 months out from her accident. They did lots of testing and pretty much knew from those tests that at least 4 of her nerves were avulsed, so they knew surgery was certain. Because we came from PA and she was already close to the 6 month nerve surgery cut off deadline they decided to do the surgery while we were there. They got us in within one week. The "brachial plexus team" at the Mayo Clinic are absolutely wonderful. They are all so professional yet realistic and they take their time to explain and talk to you about everything! They spent over 3 hours with us on our first meeting. They know their business inside and out but they have a very personal touch. You will be impressed and relieved when you meet them. As it turned out, my daughter had all 5 nerves avulsed when they did the surgery. The care she received was excellent. We are not expected to go back until March.

I think it will depend on what they find from the testing....we went the first time at 4 months post accident and they were hopeful that it was a stretch injury that would improve on it's own, so we decided to give it more time. When we returned at 7 months post accident they did move forward with surgery and they were unbelieveably accomodating in scheduling it and getting us home. We've been back once more at 6 months post surgery and will go back at 18 months post surgery. The team is unbelievable...actually the entire facility is like nothing I had ever seen in medical care. Every person we met, from the people at the info booth to the doctors themselves are incredibly kind, helpful and gracious. We are also impressed with the time the team took with us and that they were upbeat, but realistic. And one thing we loved was at the final meeting after all the testing, the entire team comes in- doctors, PT, nurses,everyone- to evaluate and discuss. We found it so helpful to hear about options from different perspectives and especially refreshing that we didn't have to retell the story and answer the same questions 20 times....I know that might sound small. But after 4 months of floundering to find good care, we had answered the same questions 100 of times over. Best of luck to your son- you will be so pleased you made the trip! Oh, and on a totally seperate note- there are lots of fabulous restaurants in Rochester too, if you need "distraction" in the evenings

Thank you both! It sounds promising.
BensMom, do you think you could share any restaurant names? I have been looking that up....Any suggestions would be appreciated!

restaurants? I cantell you the place like the back of my hand! I have made over 50 trips in 17 years, and 23 of them in the past two years. Where are you staying? Yonkers is great. There is a great restaurant across from St Mary, too. My husband got breakfast from there a lot, he now knows the owner. They have a chain restaurant in the mall, Applebee's
http://www.apachemall.com/html/mallattractions.asp and the mall across from the clinic has a food court. In the clinic on the subway level, attached to the clinic there are a lot of sub and sandwich shops. The Kahler has their own restaurant (2 of them) but the coffee shop type is nice as well. Anything you need as far as your stay, let me know. I can honestly say I think out of everyone on this board I have gone the most often and the longest. 50 some trips, 12 surgeries and 17 years of traveling. I will be there next Wed.? The 17th. 12th floor plastic/reconstructive surgery.
Kathleen
Chicago

Sure thing---

Our very favorite place to go while there is Sonte's http://www.sontes.com/ It's a great tapas bar, lots of great wine and fun cocktails too. Another yummy spot, especially for seafood, is the City-Cafe http://www.cccrmg.com/city_cafe.htm

Newt's is a nice casual spot for burgers and beer. And Metro Restaurant (in the skywalk) is another good spot for sandwiches/salads/burgers. The Canadian Honker is supposed to be another good one- we've never been there, its down near St. Mary's which wasn't convenient for us, but everytime we're out there, it's been recommended.

Dos Amigos was good for Mexican- nothing out of the ordinary, but yummy.

There are lots of lunch options in the underground subway area and in the galleria. And right across from the galleria (on the side away from the clinic) there is a little sandwich place, I think the name starts with a "c" but I can't think of it...anyway, it was good for something different (Subway lunches got old after awhile).

There is also a fun martini bar in the Kahler!

Sounds like all we do is eat while we're there....but we figured if we were spending all our "vacation" money on trips to Rochester for the next few years, we might as well make the best of it

Let me know if I can answer anymore questions-where to stay, transportation, whatever.


Message was edited by: bensmom


Message was edited by: bensmom

Bensmom,
You've got it. It is sooo much better to treat yourselves as much as you can when at Mayo or any other hospital experience. It is, after all, a break from usual routine days, but I can't say our experiences in my son's childhood[14] times were a "vacation", but I did call those days at Children's Hospital of Philadelphia our "other home away from home".

Hugs to you all..you inspire me alot!
Carolyn J
LOBPI adult

I agree...it's no vacation by a long shot. I just meant all our money that would have been used on a vacation has now been diverted to Mayo trips---no family vacations in our future for a long time, but we're making the best of it

that is all you can do! Make the best of a bad situation. We took the kids with us once, 4 of them, I can't remember what hotel it was but we had reservations in a suite away from the main street and the clinic.I walked in and walked out-no way. It reaked of smoke and it was dirty. We drove around looking for a room, and big enough for 6. I was getting scared, I guess a convention was going on and everything was booked. I think it was the Raddison on the main strip that I finally got a room, but I had to get two of them. I asked if the Penthouse was still available and he yes for 800.00 a night. I said"come on, $800??? when is the last time you rented that out?" He laughed and said about a month ago. I said"why don't you let us use it, its the same as two rooms as far as cleaning and its not being used anyway" To make a long story short, I got he manager and he gave it to us for $275 a night! My kids felt like "Zack and Cody". It was GREAT! We had a private key to our floor and the view was amazing. We also were located on VIP floor and we had breakfast free on our floor and in the evening it was cocktail hour (also free) wth sandhiches and hot food. My husband enjoyed his cocktails and we got two meals free a day!!!We had a great time!!! So ask next time for an upgrade and see what happens............................
Kath

Good luck to your son with his appt. We were there just last week with our son. You got some good suggestions on restaurants in the area and another one is Victorias, a little itallian place around the corner from Mayo.

Kath... looks like we need to take you with us next time, maybe we can get VIP like you, LOL !