tell me @ middle fossa recovery, short term

[Jim Scott]

Jesse ~

I've hesitated to respond to your questions because (a) I didn't have MIddle Fossa surgery and, (b) I didn't have my (retro) surgery at HEI. 

Still, after reading the replies posted, I feel it's safe for me to comment that having an advocate with you while you're hospitalized is crucial - for many reasons - most of them persuasively addressed by Brian ('Pooter') in his post.
 
My wife - who stayed with or near me from the time I was admitted and for the next 3 days (she slept in a nurse's lounge - with hospital staff permission) was not only my advocate but yes, she helped me walk the halls and kept me company.  I was very encouraged by her presence.  By Day 5, I 'passed' a PT nurse's 'balance test' and was allowed to be discharged.  I suspect that individual doctors and hospital staffs have their own criteria for what constitutes 'passing' a balance 'test'.  I had to walk up and down the stairs without using the handrails and walk a (relatively) straight line for about 30 feet.  Fortunately, my post-op recovery was excellent and I was able to do what was asked, which, I suspect, surprised the rather skeptical PT nurse.   

I'm not sure about HEI's rationale for 'holding' post-op patients in the adjacent hotel for a few days but I would assume that it is mostly for observation, not necessarily connected to flying - but I could be wrong. There are issues that can arise soon after post-op, such as a nascent infection at the incision site and other unpleasant situations, most of which can be best addressed in a hospital setting.  Also, once you leave L.A., the HEI doctors are unable to monitor you with any degree of accuracy.  I'm speculating, but these would all seem to be logical reasons for 'holding' post-op AN patients at HEI by discharging them (freeing up a hospital bed) but continuing to keep them close at hand for observation and possible medical attention, should that be needed.    I would assume that having at least servicable balance and no obvious complications would be the criteria for a 'full' discharge from HEI.  Again, I'm speculating and could be wrong.

Jim

[Larry]

Jesse,

Why are you considering surgery anyway? Your tumor is small, unless you have suffered hearing loss, have balance issues or headaches, then go into wait and watch and have an annual MRI, or 6 monthly if you so desire.

A high level history of my situation:
I had middle fossa 9 years ago (when i shouldn't have coz my growth wasn't big enough but i was stupid!) anyway, since surgery, my balance has been off a bit - not major but if I look sideways at buildings whilst walking, I'll stumble. I have had chronic and debilitating headaches since. I have not had one headache free day and about half the time, its manageable but the other half its awful (tried and on many drugs). 3 years ago it grew back so about 8 months ago, I had radiation treatment - I will not have surgery on it again!

Following surgery, the first day was in intensive care and I couldn't give two hoots about visitors, the second day in the ward but didn't really want to see anyone. Third to 5th days, yeah it was good to get visitors. 6th day sent home and was off work (office work)  for 6 weeks. When i went back to work, it was hard to concentrate but one does what one has to do.

I'm from the land down under and the leading surgeon here (I didn't use him - again stupid) does not do middle fossa anymore because of two main reasons. One is, you don't get a complete look at the tumor - its less invasive than translab, but the main one is the post surgery side effects - mainly headaches.

If you are hell bent on surgery, your decision should be made on the best surgeon that you can find and the one that you are most comfortable with oh and financially affordable of course. The downside of getting a less experienced surgeon is life changing. Anyway, I'd wait and watch, and then zap the %^%$&%^&^


laz

[Denise S]

Well, my 1st response would agree with laz above.....1st do a watch and wait to even see if the tumor is growing and at what rate.   I don't feel size is much a matter, but you want to be sure it's growing. 

I had Middle Fossa about 9 weeks ago and there is more info on my blog in my signature.   I was on Watch and Wait for awhile because I also have another brain tumor that was being watched.   The AN was growing faster than normal, and it did affect my ABR tests and initial hearing test, so that is when we decided to go ahead with surgery.  (Plus I wasn't working as of that month we scheduled it, so didn't need to worry about that...............thankfully because I'm still having issues)

It got to the point that my tumor looked only about 1cm, but the surgeons told my husband it was larger.   I too am 38, and have had surgery before and honestly expected the best.  Well, it was fine in the beginning, but have a few issues later.   One thing I've found over & over on this site is people talk about how EVERY persons situation is Completely different, and boy is that true!     

So, in a kind way......I would highly recommend doing watch and wait 1st due to the size.  Just my thoughts.  PM or email if you have any questions.   I can try to answer more later.

Take care,
Denise

[JerseyGirl2]

I'm not sure about HEI's rationale for 'holding' post-op patients in the adjacent hotel for a few days but I would assume that it is mostly for observation, not necessarily connected to flying - but I could be wrong. There are issues that can arise soon after post-op, such as a nascent infection at the incision site and other unpleasant situations, most of which can be best addressed in a hospital setting.  Also, once you leave L.A., the HEI doctors are unable to monitor you with any degree of accuracy.  I'm speculating, but these would all seem to be logical reasons for 'holding' post-op AN patients at HEI by discharging them (freeing up a hospital bed) but continuing to keep them close at hand for observation and possible medical attention, should that be needed.
Jim

As I recall, there was certainly no obligation whatsoever to stay at Seton Hall either before or after surgery at St. Vincent's/House -- it's just a great convenience for out-of-town patients. I know of quite a few House patients who didn't stay at Seton, but went to an area hotel until they left for home. I was very thankful that Seton was an option -- as I had mentioned in an earlier post, it was very reassuring to know that should any problems have arisen I was steps away from the hospital and House Clinic. As it turned out, following my release from the hospital back to my room at Seton I had no contact at all with House personnel until nine days after my surgery when I had final appointments with the internist and surgeon at House -- this was the day before I left to fly back home. So those of you who are considering House but want to stay somewhere other than Seton ... go for it!

Catherine (JerseyGirl 2)

[Lilan]

Yes, absolutely no obligation to stay at Seton. If you're local, you go home; if not, you can also stay at any hotel of your choosing. I know someone who had surgery out there and stayed with friends afterward -- whatever.

It's just inexpensive and convenient. In addition, you won't exactly look your best at first, and personally, I felt very un-self-conscious there vs. being in a nice hotel -- everyone knew why I walked like a drunk and had a shaved head/sticky hair....

[JerseyGirl2]

It's just inexpensive and convenient. In addition, you won't exactly look your best at first, and personally, I felt very un-self-conscious there vs. being in a nice hotel -- everyone knew why I walked like a drunk and had a shaved head/sticky hair....

Good point, Lilan! Everyone at Seton either looks like heck because they've just had surgery ... or they're staying with someone who has. While I dressed in street clothes to go eat in the hospital cafeteria, I had no problems wandering into the Commons Room on my floor wearing pajamas. The camaraderie at Seton was also a big plus. I would certainly stay there again without a moment's hesitation.

Catherine (JerseyGirl 2)

[Jim Scott]

As I recall, there was certainly no obligation whatsoever to stay at Seton Hall either before or after surgery at St. Vincent's/House -- it's just a great convenience for out-of-town patients. I know of quite a few House patients who didn't stay at Seton, but went to an area hotel until they left for home. I was very thankful that Seton was an option -- as I had mentioned in an earlier post, it was very reassuring to know that should any problems have arisen I was steps away from the hospital and House Clinic. As it turned out, following my release from the hospital back to my room at Seton I had no contact at all with House personnel until nine days after my surgery when I had final appointments with the internist and surgeon at House -- this was the day before I left to fly back home. So those of you who are considering House but want to stay somewhere other than Seton ... go for it!

Catherine (JerseyGirl 2

Well, Catherine, I hedged by stating that I could be wrong (I didn't have surgery at HEI) and apparently, I was.  Thanks for the correction.  Glad we got that cleared up for Jesse. 

Jim

[DR]

1) how important is it to have someone with you most of the time, WHILE still IN the hospital?
i.e. helping you get to the point of walking good enough they CAN discharge you?
i know RNs, and PTs are only able to spend so much time with a given patient.

i certainly want to get out of the hospital as soon as i possibly can do so (safely).

2) when people fly out to LA, for example, and after they walk enough to be discharged to teh hotel for a few days, prior to flying back home . . . what exactly is the purpose of those few days?
just additional observation for complications?
is there some other milestone of get-around-ability, which must be hit?
is it related for pre air travel only? and they coulda DRIVEN home, as soon as they were walking enough for discharge?

1) I found it very reassuring to have my wife close by during my time in the hospital.  We both knew the kids were in good hands (spoiling hands actually) with her parents so there was no issue there.

2) The hotel time is required (by House at least) to allow extra time nearby in case any serious issues develop (spinal fluid leak, infection, etc.)  I didn't ask about driving vs. flying.

Feel free to check out my blog (link is in my sig below) or, if you prefer, we can talk on the phone.

- Dennis