United Brachial Plexus Network, Inc.

Even if you don't have feeling you can still get nerve pain, which can get quite bad and can last a long time, even may never go away. Neurogenic pain is very different from other types of pain, can be a burning, tingling, pins and needles, squeezing.... Even if the person cannot feel touch, they can feel neurogenic (nerve) pain.

Hope your son improves by leaps and bounds!

Marieke (31, LOBPI and Transverse Myelitis @T1)

Dear tk,

I'm so sorry to hear about your little guy. You are in good hands with Dr. Shin et al. Our 17-year old son had a tbpi in august and I searched the web to find the best doctors...and ended up at the Mayo too. We will be there again to see the bp docs on Jan.23, with surgery sched for Jan.24 at St. Mary's. I don't know if you will still be there...they suggested Eric would probably be sent home after 3 days. The very best of luck to you and I hope Masen's arm pain disappears soon.


Message was edited by: fortitudine

We might still be there, Masens surgery is on Jan. 18th and they said he would be in the hospital 3 or 4 days. Maybe we can meet up if we are still there. What happened to your son? TK

tk - Our son was in a bicycle race. He hit a sewer grate that was sticking up at 70 km/hr and went a-- over teakettle for 30 feet. He hit a guardrail which is probably what caused all the nerve damage as well as fracturing his collarbone.

Do you know that if you contact the ronald mcdonald house when you get in town, if they have a spot you can go there instead of a hotel and it is only $10.00 a night. If they don't have a spot they will give you the name of a hotel that will give discounts and put you on a waiting list, which might only be a day or two. I of course will be at the hospital with Masen, but since Masen's accident hospitals are hard for my husband so he will be staying at either a hotel or the ronald McDonald house if they have a spot when we get there. They have a website, so you can check it out. It looks very nice. Thank you for telling me about your son, I will add him to my prayers. TK

The RMcD House is wonderful! John stayed at the one in Rochester several times, since all his surgeries were before he was 18 years old. They really go out of their way to make you feel comfortable. There were several kitchens with much donated food, everyday we got a $5 taxi ride donated, they gave John a little quilt that local people make - and every day in John's mailbox thingie there was a little something for him. One family I met had lived there for almost a year. They were from another country & their little boy had cancer & some cutting edge treatments. I guess since they were from another country it made sense just to stay there between treatments. We were always able to get a room there by our second day in town. You have to wait to call & check availability until you actually arrive in Rochester, so if you have an early flight you might get right in...

Take care & we're rooting for you!

Ellen