United Brachial Plexus Network, Inc.

Hi, I was wondering how aftercare is managed when you travel for surgery. We will likely be traveling to Mayo or Johns Hopkins from California (still trying to decide) for primary surgery in the next 4-6 wks and was wondering how to manage traveling after surgery and aftercare. Once Chase has had surgery, how difficult is it to get back on a plane for a 5-7 hr flight? Will he be able to walk through the airport if they use sural nerves from his legs or will we need a wheelchair? Is it safe to be on a plane that long after this type of surgery? I know most people travel for these surgeries, so I'd love to hear about your experiences to make things as smooth as possible (BTW, Chase is 7yrs old with LTBPI). Additional concerns are who do we follow up with afterwards? We're not really under anyone's care currently and have "self referred" to these surgeons we're considering based on the feedback we've rec'd from you all on UBPN. Again, any suggestions are appreciated.
Lourdes

Hi Lourdes,

Here are a few thing I can remember from John's surgeries a couple years back:

- First of all, Chase won't be released from the hospital until he is up on his feet & able to walk up & down the halls. Surals were taken from John's legs the 1st surgery and by the 3rd or 4th day he was fine with it. (But one thing we did have to keep an eye on was keeping the incision stable for healing near the ankle bone - for several weeks after getting home.) Bottom line, Chase will be mobile - but you still will probably want a wheelchair in the airport since there's so much walking & he'll tire easily so soon after surgery.

- Since showers will be tricky back home, you might want to ask the hospital to give Chase a good scrub (shampoo also) before he's released. It can buy you a couple extra days before you have to manage it at home.

- For ease of dressing, we took x-large tshirts & cut them up the back. At first John kept his arm under the entire shirt, later we could wiggle the arm of the shirt up his bpi arm so it was on the outside. We just safety-pinned the tshirt down the back. Since John's surgeries were in the winter, he kept a fleece jacket over the tshirt so nobody saw the safety pins. Since Chase's surgery will be in the summer, I guess he won't wear a jacket but he might not care about appearances anyway.

- You might want to request the airline put Chase so his injured side isn't exposed. Since he's a child, he probably will have ample room in his own seat anyway - but with John being older, we were careful his arm wouldn't get bumped by another passenger. However - with a longer flight, Chase will probably benefit from getting up & moving around a few times, in which case an aisle seat might be easier logistically. Just a thought. (Maybe an aisle seat with the bpi arm on the inside?)

- Re followup afterwards. John returned to Mayo after four weeks to get the cast taken off & to get us educated re PT. But I know of others for whom that much travel wasn't an option, & Mayo worked with the local doctor for this part. Chase will need to be active with PT (John went 2 x week for quite awhile, as well as daily at home) - and the Mayo PT was great about working w/the local guy. We even videotaped the PT sessions up there so it was easy for the local folks to know exactly what to do - as well as a reminder for us with the daily work at home.

Question re your self referral to Mayo or Belzburg: how does your insurance coverage work in that scenario?

I'll keep updating as I think of more, but at least this is a start.

Take care,

Ellen

When my daughter had her surgery at the Mayo, they told me she could get on a plane the very next day after being released from the hospital. (she was in the hospital for 5 days) Of course we waited about 5 days more after her release to fly home. They will help you find a trained physical therapist in your area to followup with care. There was no cast to be removed. She was just in an immobilizer for 4 weeks afterwards. As for the legs, like Ellen, said watch down by the ankles it seems that is where they bump them the most and knock the scabs off. Of course it was probably from the socks that kept rubbing on my daughters legs that caused the scabs to break away and reopen. As for the plane ride she did better than I did. She sat on the inside next to the window with her immobilized arm towards me. That way she did not have to get out of her seat to let anyone out. Of course we traveled from Minnesota back to Alaska and that was an awful long day. With all the pain meds she was on she just wanted to sleep the whole time. We did use a wheel chair at the airport because she wasn't walking real strong and switching planes you have to really move to catch your connection. Just let them know when you check in that you will need a wheelchair and if you have to switch planes make sure you tell the flight attendants that you will need a wheelchair upon arrival. I hope this helps and let me know if there is anyway I can help.
Rene

Hi Ellen!
As always, you're a wealth of information and always willing to share - thank you for all the suggestions. I haven't seen you around much and have missed your insight and wisdom. I just called Mayo to find out how far out they are booking surgeries and she said somewhere between 2-4 wks following consultation - we're having a real tough time deciding where to go. Because we are BlueCross PPO, we can go to either. One benefit with Dr Belzberg at Johns Hopkins is they are scheduling his consultation with OR time so it's one trip, but we really like Mayo's team approach (the DVD really helped). Chase hasn't gotten anything back in these past 2 months, so we're anxious to have surgery to know the real extent of his injury. Thanks again for sharing your experience and we'll keep you posted.
Take care!
Lourdes

Believe it or not, I'd recommend flying Southwest when you decide where to go. When you check in, let them know you have medical needs and you'll be first on with the pick of the plane. It's especially good if you don't know your plans months and months in advance to get a good assigned seat on another airline!

Good luck with your decisions and scheduling!

Kate

Also, I've heard from other parents that they were given a hard time about their child's immobilizer after surgery (especially post 9-11) - the agents at security actually wanted them to take it off! Just in case, get a note from the doctor stating that he had surgery and the immobilizer cannot be removed under any circumstances.

Kate

My son had surger at Johns Hopkins and we are very pleased with the experience.

We liked the idea of a group of doctors each with their own expertise. Hopkins offers this as does the Mayo. Some of the centers are just one person and I did not think they could be expert in all aspects of care.

We found the leadership at Hopkins (Dr Belzbeg) to be someone we could relate to and he gave us great confidence in the care our son would receive. We met several doctors who were also involved in the decision making and in the surgery, all were very impressive.

After care was easy. We speak with a PA when ever we want and one of the doctors when there is a serious question. They talk with our local therapist and lay out what they want done and then we follow up.

They do not promote the program but rather rely on other physician referrals. So, you won't see fancy web sites or lots of things on the internet, but they have a wonderful reputation in the medical community and that was what was important to us.

Finaly, I can tell you from personal experience, if you have any concerns, simply call Dr. Belzberg and talk with his nurse or PA. They will answer your questions or if you prefer, Dr Belzberg will call you directly.

Hi and happy saturday to you all. Good mood for me today Anyway, Javier was 7 months when he had primary. We flew to Miami and on the way home 2 days after discharge we had to switch planes 2x. He slept a lot and wasn't really that fussy. As far as airport security,I agree get a doctor's note. Hopefully that helps. Javier had a cast which of course can't be removed, but they did swab it to test for flammables and explosive material at the metal detectors. I assume the swab works like a litmus test. Anyway- I wish you luck and offer many prayers.