United Brachial Plexus Network, Inc.

spoke with the PA last week who is involved with surgery at mayo - he informed me that they used to write prescriptions for bigger airline seats (if available) but with the smaller seats air travel can be very uncomfortable - i booked our return for march 5 (providing the hospital stay is the 5-6 days) - i would appreciate all the information i can get on recovery for my son - bpi 8/7/08- 21 yrs old - the PA stated our biggest fear is his lungs as he was in ICU for weeks with ARDS (advanced respitory distress - his lungs were shattered and he was an ecmo canidate at time of accident) any information would be helpful on recovery - we fly out 2/23/09 for pulmonary testing on the 24th - thank you, shelly

I can't offer any advice about the concerns with your son's lungs, and of course, depending on the surgery being done, the recovery process is different, but I'll share my husband's surgery recovery (he had a branch of the nerves to his tricep moved to his deltoid). He went into surgery on a Friday mid-day and was in recovery in the early afternoon and into his room by late afternoon. I would suggest bringing an overnight bag, I was able to stay the night with him in the hospital, but they couldn't tell me for sure if I would be able to until he made it out of recovery and into his room. Evidently there are two different "wings" the patients can end up in, one allows overnight guests, the other doesn't and we didn't know where he would end up until after the surgery.

Anyway, he was very groggy, but not in a terrible amount of pain. He did take an oral narcotic pain reliever (codeine maybe??) in the late evening and promptly threw up, that was the last thing he took besides OTC pain relievers for the duration of his recovery from surgery. I won't say it was easy for him by any means, but he felt the side effects from the heavy narcotics was worse than the pain. The next morning they came in and fitted him with an immobilizer- basically a fancy sling device that keeps the arm stable against your body while everything heals. He had to wear it for 3 week and that was definitely the worst part. He had recovered basically all his hand function by then and a good deal of bicep and going back to using one arm for everything was frustrating. Plus, he could really only sleep on his back which wasn't comfortable so he didn't sleep well.

They discharged us that morning and we were on the plane home by 10 am. It wasn't a fun trip, but not horrific. I made arrangements at the gates to be sure that we were the first ones on the plane and we waited to be the last ones off so he didn't get bumped. And the gate attendents were very helpful in changing seat assignments so that he was always by the window and I could sit in the next seat so he didn't after worry about anyone hitting him. I also made sure I walked just behind him and to the side where the surgery was to be sure he wasn't bumped. I know, silly little details but there are times that I wish I just had someone to iron out the little stuff for me, so there you go.

He was back at work on Monday. Not at full capacity of course, and he's an engineer, so sitting most of the day. It wasn't recommended that he go back. But he promised to take it easy and I think the distraction was good for him. Once the wounds were healed, he was able to take the immobilizer off for showers, and by the end of the 3 weeks was pretty good at getting it back on by himself. Once the three weeks were up it tooks lots of gentle stretched to get his full range of motion back. It's been almost 11 months since the surgery and we're still seeing little changes every week. He still can't raise his arm, but while laying on his back if he uses his unaffected arm to raise his affected arm, he can resist gravity and not let it fall. All small steps to an outsider, but major triumphs in this family.

Anyway, probably more details than you wanted to know. But I hope that helps, best of luck to your son.


Message was edited by: bensmom


Message was edited by: bensmom

Hello, I am at the Mayo right now. I just got here after flying in from California. Depending on how things go I will most likely be having surgery on Thursday the 12th. I will definately reply to this topic again to let you know how my travels are. I am definately concerned, but I am trying not to worry about it until I know what I actually need to deal with. Good luck with your situation. JJ

I'm praying for Ya,Humboldt, that all goes well with you at Mayo.
Carolyn J
LOBPI adult/70

Well, it looks as if I won't be of much help with travel after surgery. They decided not to do surgery at this point as I seem to be healing well enough at this time. While I am sorry I cannot help, obviously I am estatic about not having surgery. If you would like to read about my Mayo visit please check my blog. http://www.humboldtmtnbkr.blogspot.com/ . Good Luck, JJ

i had the surgery on 1/27 I was in icu for 3 days
reg room for 5 days.
they did puncture my lung, just like they said there was a risk.
the lung tube came out within 5 days
my travel home was ok, but i was still in a lot of pain.

just had my 3 week checkup, im feeling better but my nerve pain has gotten much worse

we are in mayo clinic - surgery was scheduled for today - upon meeting with the dr bishop and spinner yesterday - they informed us that there was a miscommunication with drs and surgery is now scheduled for monday march 2 - now we are finished with appts and waiting til monday - making airline, rental car, and flight changes - they stated 2 drs could do the surgery but 3 works best - again any/all info is appreciated

I can give you some info on my returns home after surgeries.
The first major surgery I had up there left me in a LOT of pain, mainly from the Sural nerve transfer, and the gracilis muscle transfer. My lung was also punctured in that surgery so breathing was significantly tougher than normal. I was returning home with my mother, and it would have been virtually impossible without her. We got in contact with American Airlines ahead of time and they were very accomadating. They gave us a row of three seats,the arm-rests go up so we had an extra seat and they always had a wheel-chair ready, as well as letting me be the first person on the plane and last one off. Although the last one off posed a problem, because a lot of inconsiderate people like to take the wheel-chair that's waiting for you. It actually infuriated me one time because a young girl, that was our flight, happened to be on my connecting flight and she happened to have a nice, big wheel-chair that she was using for her 2 carry-on bags, that she didn't have any problem carrying through the airport in Rochester. Anyway, they got me another wheel-chair very quickly. They only real problems I had was just that I walked(more like hobbled) very slowly due to the Sural nerve transfer and the gracilis muscle transplant, otherwise the trip home wasn't too bad and that included a 6 hour lay-over. I don't know if you're having a Sural nerve transplant, but that was the only thing that seriously effected me on the way home, but it wasn't terrible, it just made me move at a snail's pace and it didn't hurt any worse on the plane then it did when I was home(believe me, I'm not saying it didn't hurt), which means that it was incredibly painful whenever I had to stand up or sit down. Man, I forgot how painful it was the first couple weeks after the Sural nerve transfer, it would take me a couple of minutes to stand-up because I had to muster the confidence, knowing that it was going to all sorts of shooting pain up my leg.
The next big surgery I had(11 hours long)at the Mayo Clinic(I had 3 small ones in between) I thought was going to be even worse. The doctors led me to believe the pain was going to be even worse, which I am very glad they did. The instant I woke up in the ICU I was expecting a lot of pain, and I felt great. I had another gracilis muscle transfer, but I was able to stand-up that very day, without the help of the nurses. The way home was great because the whole time I was planning for the worst. Once again people steal the wheel-chairs that are waiting for you right outside the plane, in the terminal-thingy, but that's just the luck I have. It actually made my mother and myself laugh this time, because people see you hobble on to the plane like a cripple, and get mad because you get on the plane first, and then take the wheel-chair when you land, because either they don't realize it is for someone who needs it(doubtful), or they just don't care(most likely). It may not sound funny, but I find it humorous in how miserable people get over the littlest, most petty things, when it can be so much worse. Anyway, travelling home wasn't too bad, the worst thing about the surgeries was being in the ridiculously hot rooms afterwards, especially one-time, the little portable room heater they put in my room, had the room well above 90*, I know this because I live in South Florida and I know what 90* feels like. So don't worry too much about the return home, after going through the the surgery and the recovery in the hospital rooms, the return home is nothing.