United Brachial Plexus Network, Inc.

hey all,

I'm headed to the Mayo Clinic (thanks to everyone who suggested it) in Rochester Minnesota in December. Does anyone know of low cost lodging?

if you call the hospital, they might have an agreement for discounts for out-of-town patients with a particular hotel. good luck. hope all goes well.

Hi wafloodzone...my injury was just 10 days after yours and our initial assessments seem similar. How have you seemingly been able to "fast-track" your treatment options? Maybe it has more to do with my other injuries, but I was told the EMG results would not be reliable until at least 3 months post-injury (today). I go for it next Monday (8/14). Although a complete avulsion of C5-T1 was initially suspected, I can now flex my bicep, so I'm very optimistic.

You're already going to Mayo Clinic...I've seen 1 specialist 1 time and was told to wait. I know all people are different but making sure I'm not way off the path.

I'm knew to this board and am just getting to use Internet for research, so any and all help appreciate.

Thank you.

Hi Fred5454. Sorry about your injury. I've taken by horns and I'm rolling. Just starting into my 3rd month I had my family Dr refer me to a specialist. She did the EMD which was very glum. No activity at all. She referred me to a Nerosurgen in Seattle. He said that I had torn the roots right out of the spinal cord from C5-T1. He ran a more in depth MRI where he could a better view if the spinal cord ans nerve damage. He though he could fix C5 and get some use of my bicep and possibly bend my elbow.

I wanted a second opinion so I followed the advice of my fellow ubpn family and requested an appointment (from Mayo Clinic's website). They called me the next day and told me to send any MRI's, results of the EMG, hospital or personal DR reports, anything I had that pertains to the BPI. (make sure you keep copies)

I overnighted my information last Thursday. They called me Monday and made me an appointment. You really need to be pro-active and and push forward. Ive been told that it's best to get things fixed in the first 6 months so we have a little time but it will go by fast.

Hope this helps

fred5454, it makes me cringe when someone is told to do the waiting game. unles it is from a BPI SPECIALIST. i was told to wait and see what happens when i had a stretch injury. i was on the verge of losing the use of my hand completely. i finally had to get really nasty about getting an EMG after 8 months. i got one, but it was another 2 months before i could get to the specialist. ultimately, my surgery was 14 months after my injury. my muscles had a lot of fatty tissue in them and the surgeon was almost unable to do the surgery because there was not enough muscle tissue to work with. she was a good enough surgeon to figure out a way to do the surgery and it was successful. so DO NOT PLAY THE WAIT GAME. your muscles will deteriorate if the nerves are not repaired soon enough. good luck to both of you. fred and wafloodzone

wafloodzone did you find any lodging within your budget?

Wafloodzone and jmar - thank you for the quick feedback and suggestion of quick action. I Have a neurosurgeon as I broke my neck in the accident and he had to fuse C5-C7. At the time, nobody knew for sure about my BPI because I also shattered my pelvis and leg. When I talked to him after EMG, he said my C5-C7 were "fully communicating" during my neck surgery. I have another appointment with him next week as well as the 2nd EMG, and also then with BPI Specialist. Right now, I can now flex my bicep and bend arm at elbow but nothing with wrist, hand or tricep. Maybe it's only my C8 & T1 that are avulsed but definitely something I will discuss with the neurosurgeon next week. Then I should have enough info to get a second opinion from Mayo.

It sounds like within this BPI group, most people recommend the surgical intervention route. Do either of you know about the success rates of these surgeries, or can you point me to the best resources?

Thank you so much. I'm a little late to the table and need to play catch up now that I'm able.

JD

We also have to travel in and stay at hotels when we go to Mayo. Parking is an absolute nightmare and they charge to park in their ramps. Always give yourself an extra half hour to park I also think on the main Mayo website they give lodging info. We stayed at the hotels that connected to the clinic building itself so we could just walk over then we did not have to deal with parking. We would often stay at the Khalar (sp?) inn and suites. I think it was around 78-99 dollars. It has a mayo clinic rate listed in the website and they will let you have free late checkout on approval. It had a free breakfast and it was connected. Chris also would sometimes have appts and procedures at St. Mary's itself and we would always stay at the courtyard by Marriot. That was right across the street. We always got a great deal becasue they offered a great military discounts. I know there is cheaper options too with weekly rate, they are just are more by the interstate. Good luck to you. We have spent weeks in hotels up there over the years. Good luck to you. Its a great team of docs. They always remember Chris well as he is the only reimplanted hand TBPI they have seen.

I've stayed a few places, some in town, one across from St Mary's, which is great If you're getting surgery.

Staybridge Suites:
http://g.co/maps/uuftw

Staybridge Suites have always felt the most comfortable to me (and visiting family), less hotel like and more like a home away from home, which is nice if your getting put under the knife. They've got a free shuttle that'll take you into the main town area, or you can take the 4-6 minute walk (which I preferred).

if you are going to a regular neurosurgeon for this, i would recommend NOT letting him do this surgery. if it is not a specific BPI SPECIALIST, you will not get as good of a result. i know this from my personal experience. Dr Susan Mackinnon in St Louis, Missouri has a brand new procedure that she done on me. it has done wonders for my hand. i think it is called rett. it is not published as a regular procedure yet, it is still something she is developing, but like i said, it has done wonders for me. if i would have stayed with the neurosurgeon, i would have lost my hand altogether.

This is interesting because I had so many surgeries (for the whole body, not just the arm) that I moved to Rochester so I never had to worry about a hotel stay. From what i've read the hotel advice seems pretty solid. Khalor and marriot are pretty nice, and the khalor is especially convienient if you are just doing appointments, as the Mayo BPI specialists all do the appointments on Gonda 15, and the khaler is directly across the street from the Gonda building. The one Chris recommends is the most convenient if you are having surgery at st.Mary's hospital. (The entire Mayo Clinic is spread all over downtown rochester, it's best to learn individual buildings), but is still near enough to downtown and the gonda building to walk. My mom lived at the Belltower right next to the staybridge when I was in the icu, but I don't think it's as nice as the staybridge, lol.
.....That said, pretty much all the good hotels from downtown rochester to spreading out farther away from the downtown have a complimentary shuttle service to get you where you need to go. I know some people have had good luck with the Best westen that is nearby, but not directly downtown.
Downtown parking is truely atrocious and they've even raise the parking ticket cost from $9 to $17. A big benefit if you ghave a hotel shuttle.
A warning about the weather......MN can get verrrrrrry cold in December - February (and usually march) and they're predicting a long cold winter like last year. December is usually medium cold (10-30 dgs) and heading into january the temp get's subzero. I find downtown Rochester to be especially bitter because all the tall buildings act like a wind tunnel and can blow a freezing wind in that area. Bring warm clothes