needing advise info on those who have traveled out of state for surg..

[admin]

I am adult with a huge nerve tumor under clavicle compressing my bracial plexus (and with scar tissue from biopsy)in the Orlando Florida area. Dr. Nath in Houston is reviewing all my records, films, and tests now so as to know exactly how to proceed as my situation is not very common. However he is hopefull that he will be able to do surgery on me very soon to remove the tumor, and save or reconstruct the nerve.

In the meantime I have been doing as much research and prep as poss, but am rather overwhlemed from this rollercoaster ride(found tumor July 4th and in that time was told I had lymphoma, underwent many tests and finally surgery only to find out it is schwannnoma, rare nerve cell tumor, and have been in horrible BPI pain etc, and on multiple doc/insurance merry-go-round, until finally getting together with Dr. Nath...which has been a blessing and miracle), and are somewhat clueless as to how this all works from out of town.

I know Dr. Nath's group is very helpful with transportation and accomodation suggestions etc, but we wanted some practical advise from those who have been there. We are not sure how my surg or afterward is going to go, and may not be like some of these others, has more complications...they will have to break my collarbone and there is great risk to my lung as tumor is on top of it, but still will find this general info VERY useful.

1) are any of the Houston hotels better as far as price, ammenities, or comfort..as far as being disabled a bit with the surg, (hard to sleep in most positions)?

2) How was plane travel etc, with the BPI discomfort and pain b/f and esp after surg...any tips? How is nausea? How long after discharge should one travel?

I really appreciate any tips or advise on how to proceed b/f and after. Thank you!

[cbe411]

Null, post this on the general boards an d I bet you will find all kins of advice!
~Courntey xoxo

[rachelcasa]

Hello there Null,
I am going there on Sept.9th for the mod quad surgery, when I get home I can fill you in on some major details. We are staying at the Marriott hotel which I heard from several other people is attached right to the hospital there in Houston. You can take the skywalk over to the hospital and never go outside if you don't want to. Deanna told me that there are restarauts up on the second floor of the hospital to eat at as well. Go look for her name in the Obstetrical or the general message board, e mail her the same and she may answer a bit more of your questions. Until then, I'm Houston bound and can answer more for ya when I get home!! *HUGS*
Good Luck to you

[Francine_Litz]

hi - of course my answers are going to be from a 'mom' of a child with bpi so I will try my best...

http://www.injurednewborn.com/maia/travel.html
this page will offer you some hotel info, etc. - just scan through and see what will apply to you...

many hotels have discounts for booking on the internet... (crowne has great discounts)... and many of the hotels accept the entertainment card for half off on certain days (marriott does on weekends)...

marriott has an indoor heated pool - so we like that option - their rooms are nice... but if you are allergic to down, note that they have down pillows and comforters.... which I am sure they would exchange for allergy free products if you needed to

Crowne was beautiful inside - had an outdoor pool which was also wonderful...

we also went to the holiday inn - just across one more street and three times it was very nice but the last time it was awful

ALL hotels have good and bad days for service and good and bad rooms! I was shocked to learn this but it's true. If you get into your room and you don't like it complain and switch it... or go to another hotel. I think you'll always be able to find something - there are many hotels there... it's just a matter of of you shuttle or take a taxi to the hospital (which by the way we took even if we stayed across the street! because the traffic was a bit crazy and it was hard to walk across with all the luggage)

EAch person handles anesthesia differently so there's no telling if you will be nauseous or not. Maia vomited once for primary, didn't vomit for two other surgeries and then vomited a few times for the last one. One just never knows.

We always went home on the day we were released from the hospital - we planned it that way because we felt that maia did so much better in her own environment. So it worked for us. But if it were me - as an adult - having surgery - I don't think I would want to travel for a few days - I'd just stick around the hotel and watch some good flicks until my energy was back. But then again - it all depends on what they do - how invasive it all gets - how much pain you have and where you feel most comfortable. If you have trouble sleeping in someone else's bed and hate hotels - then maybe you need to go home faster than someone else who is comfortable.

I am so sorry to hear that your surgery is going to be so risky but I'm so glad you have Dr. Nath - we think the world of him. He is an amazing man and if you saw how he wraps his mouse cords - you would understand how much of a perfectionist he is! LOL LOL

Can you let us know when your surgery is... maia and I do pray for all those having surgery.

please keep on asking all the questions you can muster,
francine




both are directly across the street from tch...but as an adult you won't be going to TCH right? are you going to methodist or to TIRR ?

[admin]

Thank you so much for everyones help and responses. It really gives me a good place to start!!

I am still waiting for Dr. Nath to recieve the tissue samples of my tumor b/c he wants to take them over to MD Anderson and get them checked out for himself.(didn't I read here about what a perfectionist he is?..lol) The we sould hopefully get scheuled for surg a soon as possible, depending on what he finds out about the tumor.

I'll keep you posted!

[Francine_Litz]

that's an incredible part of being at that medical center - some of the world's top hospitals are there... that is great that anderson will check out the cells...

-francine