United Brachial Plexus Network, Inc.

Our first appt is 7am tues. so we will be heading to Mayo on the 13th. Staying at Kahler Economy. Also have an appt on the 15th. So will be leaving after that. Insurance is still deciding if someone in plan can do surgery for him although they have a letter from our neurosurgeon stating he does not. Am going anyway as I want the best and hopefully full or near full use of the arm. Torn nerves, c5,6&7.
Sue

I had my surgery at the mayo clinic and if you want the best its not even a question after you meet with the doctors their and read about all of the 100% confirmed results unlike some other medical practices /doctors claim.

Hi, Sue - and congratulations for choosing Mayo. I think your insurance will come around - most insurance companies like Mayo since it's not for-profit so the costs can be significantly lower.

Re the timing of your visit, I think there may be someone else from this board planning to be there around the same time. I can't remember who - so hopefully that person will see your thread & respond.

Give the Mayo team our best!

Take care,

Ellen

Hi Sue,
I'm so bummed we didn't get a chance to meet you! We were there from the 12th to the 15th and also stayed at Kahler. I take wireless connection for granted and thought I'd just look you up when we got there, but didn't have access. How did it go?
Lourdes

Sorry you two missed each other - hope the visits went well at Mayo. For future reference, there is a computer room for anybody's use in the tunnel not far from Kahler Inn...

Take care,

Ellen

Happy St. Patrick's day everyone. I will be returning for a follow up visit May 4 at Mayo. I have some movement in my elbow since the nerve transplant surgery 4 months ago. Will anyone be there that day?

Dustin had a 2 hr. EMG, a new MRI and the meeting with Dr Daubes the first day. The second day was our meeting with the group. They said one median nerve is not working. But, as the arm is gaining in strength they felt surgery won't be necessary. They thought we should see a change in the next 6-8 weeks. The nerves are regenerating. We are returning on May 2 for a follow up EMG to see that things are progressing as they are hoping. They also penciled us in for surgery on the 3rd (which they expect to cancel), but we have the space in the event there is an area that is not improving. So, we have restarted OT and have added some weight to the zero gravity excersizes he can do. This they say will build the muscles faster. Hoping for the best!! Let me know if anyone else will be there at that time. Think I will again stay at the kahler as that was so convenient.

Sue

P.S.Lourdes so sorry we didn't get to meet while at Rochester.

Thought I posted this, guess it's out there somewhere, lol. So, Dustin had a 2 1/2 hour EMG, an MRI and a meeting with Dr. Daube the first day. Second day he met with the team. They feel the nerves are regenerating as the arm is gaining strength. So we have added some weight to the zero gravity excersizes he is doing. Have also gone back to OT. One median nerve is not firing the rest are still abnormal. But, they feel this will come back. We are scheduled for a follow up EMG on May 2 and penciled in for surgery on the 3rd (which they feel will be cancelled), but we have the time if things are not progessing as they hope. They were so thourough I really feel good with what they said. Plan to stay at the Kahler again in May as that was so convenient.
Sue

P.S. Lourdes so sorry we didn't get a chance to meet.

Thought I posted this, guess it's out there somewhere, lol. So, Dustin had a 2 1/2 hour EMG, an MRI and a meeting with Dr. Daube the first day. Second day he met with the team. They feel the nerves are regenerating as the arm is gaining strength. So we have added some weight to the zero gravity excersizes he is doing. Have also gone back to OT. One median nerve is not firing the rest are still abnormal. But, they feel this will come back. We are scheduled for a follow up EMG on May 2 and penciled in for surgery on the 3rd (which they feel will be cancelled), but we have the time if things are not progessing as they hope. They were so thourough I really feel good with what they said. Plan to stay at the Kahler again in May as that was so convenient.
Sue

P.S. Lourdes so sorry we didn't get a chance to meet.

Hi Sue,
That's excellent news! Apparently the results of "natural" return are always better than those from surgical intervention. Be encouraged and know you're under the best of care. We will return in July for a second EMG.
Take care,
Lordes