United Brachial Plexus Network, Inc.

Hello everyone,
I just want to give an update as to my son's condition. He has had some trembling motions in the bathtub, but nothing else that significant. We are still hopeful. We have our first scheduled appointment at the Mayo clinic in Minnesota on August 11-13. I would love to hear about some of yalls (southern, I know) first visit. We are VERY excited and can't wait. We were told that we would be receiving a letter, does anyone know what will be in the letter? I am so curious. Will they tell us a plan of action and maybe an explanation of what procedure they will be doing? My son (Jay) has a million questions for me and I don't have the answers so I am hoping that some of yall (again southern, I know) will be able to help shed some light on whats to come. Keep us in your prayers and we will keep everyone informed.
Rosaline

Hi Rosaline, Another southerner here ! My son is a patient at Mayo. Hes been there a few times. Just e mail me if I can be of any help to you. He just had a gracilis muscle transfer there 5 weeks ago.

Priscilla

Oh I was just like you as our first visit neared, excited, anxious and ready to crawl out of my skin! I'm not sure if it's the same for everyone- but our "welcome packet" included a schedule of tests my husband was to have done--for him it was an MRI and EMG and descriptions of these tests, and also appointments with the neurology department and the BPI team- for us this was the last appointment and they had received all the test results and at this point gave us their opinions and plan for treatment. You will also get lots of informational brochures about Mayo itself, transportation, accomodations, maps etc. I can't say enough about how organized the process is- after months of sitting for hours in waiting rooms to be told, "hmmm...I'm not sure" this was so refreshing. And Mayo itself is so impressive and patient focused. We had plenty to occupy ourselves with during our downtime. Good luck and let me know if I can answer any other questions.

The info packet that first came had his appts, times, places, test and explanations. List of hotels, Shuttle schedule. hmmm think that was about it.
This thread tells pretty much about what our first visit was like.
http://ubpn.org/messageboard/thread ... 709#144709

http://ubpn.org/messageboard/thread ... 828#134828