tell me @ middle fossa recovery, short term

[neuroma_racer]

hi all,
slowly narrowing options, honing in on a middle fossa approach.

please relate your responses the first day(s), week(s), 1-2 month(s) - after a middle fossa approach resection.
particularly related to balance, dizziness, puking,
how soon could you walk? did you need a walker? 1 (or 2??) people at your side?
how soon walking unassisted?

for perspective : please also include tumor size, if it isn't listed in your signature,

we are trying to strategize the particulars of child care vs patient care.
there are surgical options locally, 90" away, 4 hours away, and transcontinentally.

my wife is a physical therapist.
but i figure the three kids need her more than i will, . . .
so, if it is done semi-locally, i am thinking she would be there for the operation, and maybe the 1st (only?) ICU day, then get back home to being a mom, and i come home whenever.

she is thinking i will need her closer-by more than that.

once people get discharged from the hospital to the 'nearby hotel' for the rest of the week, . . .
are you getting any kind of therapies?
or is it just to make sure you are road worthy and complication (reversible ones, anyway) free?

thanks,
jesse

[leapyrtwins]

Jesse -

I didn't have mid-fossa, I had retrosigmoid, but recovery for all AN surgical approaches are comparable.

The first few days in the hospital are the hardest and the first week @ home I found to be the biggest challenge.  By challenge, I mean fatigue - which is a big issue and lasts for weeks - plus balance and "wonky head".  The balance and the wonkiness (is that a word?) get better over time.  Vestibular exercises both pre and post op helped me immensely with my balance. 

Generally the docs won't release you from the hospital until you are walking - with or without a walker - and the more you walk, the better you get at it.

Your biggest "needs" once you get home will be sleep, someone to drive you places like doctor's appts., and someone to "manage" household chores and your children.

I had surgery locally and couldn't have done it any other way, but everyone is different. 

Jan

[neuroma_racer]

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?

thanks,
jesse

[leapyrtwins]

Generally time in the hospital is spent sleeping - and being roused by the docs & nurses while they take your vitals.  There are nurses, PTs, and aides that can walk the halls with you.

Don't know the LA questions, but I've heard people mentioning using a wheelchair in the airport to get to the plane - that may be the exception to the rule, though.

Driving yourself anywhere doesn't usually come for 6 weeks, but some start driving sooner than that - I think 2 weeks is the earliest I've heard.

Jan

[nteeman]

Jesse,

I too had retrosigmoid not mid fossa, but I can tell you that I was walking the very next day. I was driving my car in two weeks; back to my workout routine in about 3 weeks; back to work in 4 weeks. Never puked, didn't need a walker.  My balance is OK but not 100% -- I find that if I turn quickly it takes me a moment longer to get my bearings. If I walk and look far ahead I will tend to drift to my right -- my AN was on the left. If I do lose my balance it is more difficult to catch myself and regain my balance -- but in a year I only fell 2 times. (once I slipped on ice, once on a subway train when it jolted -- both times I felt I would have recovered before I had an AN).

Hope this helps you.

Neal

[another NY postie]

Hi, Jesse,
I had middle fossa @HEI with Dr. Brackmann the end of September.  I have been very lucky and experienced a very quick recovery.  I did have vestibular therapy for the first 4-5 weeks after I got home (in CA for 10 days).  I have a caringbridge site with photos and day to day in hospital that might give you a better idea of my experience...it is a very individual experience, however.  My tumor was small so I was advised that I would have a bad time with balance but I did not.  I skiied at week 14. 

caringbridge.org
enter:  cherylroberto

you can also pm any questions.

Good luck on your decision.
CHeryl

[Lilan]

I also had middle fossa at House; feel free to PM me if you want to ask private questions or talk.

The first 24 hours I could not sit up without reeling and retching. Prob a combo of the anaesthesia and the vestibular nerve loss! My surgery ended at 7 p.m. so the surgery and aftermath were both Day 1 and most of Day 2. My aunt was with me and slept in the room the first two nights. She didn't really need to *do* anything, but it was my first surgery and I was nervous about being alone. The nurses were extremely responsive, so I would've been fine -- it was more an emotional need.

After that, it's steady recovery and you won't *need* someone there, but you may want someone there for some of the little things you may want, and just for a little tending-to. I think it was Day 3 a physical therapist came by to make me walk (using a walker), and I felt like I was a hundred years old -- stiff, a little whirly, and just not wanting to do it. (Bear in mind these days move like molasses -- one hour felt like 10 to me.) Day 4 I did more and cast off the walker. Day 5 I was walking out the door. The next days I walked very near the hospital campus, by Day 9 I went to a shopping mall. It's steady progress. I still rested a lot, and liked to just close my eyes even if I wasn't sleeping, to shut out the overstimulation. During this period you can get food from the hospital cafeteria -- you can eat cooked meals/salad bar there and buy things for your fridge, like cereal and milk or whatnot -- like if you were alone and no one could go for groceries!

As for the days they make you stay, the primary reason is to let your noggin do some more healing before you fly, I believe. (And I found it quite nice to be 50 feet from a hospital during the early days of recovery -- just in case. And you can walk to your followup appt right there, too.) By Day 10, the risk of CSF leak is down to like 1-in-1,000. Normally they see you a week later to OK you to fly, and at that point they take out your stitches.

I went to LAX the next week on my own power, but did use a wheelchair at the airport. It's not so much the sitting that helps (though that was nice), but as much as that, I think it'd be taxing to have to wait in all the lines. In the wheelchair they just whisk you through everything and there's no waiting, so it really shortens the tiring effect. Flying itself was fine, and my friends picking me up were surprised to see me marching out of the airport to the car on my own afterward!

I know it's a tough decision that only you can make. Just do what's best for you for the next 50 years, not what's easiest for the next two weeks. Disclaimer: I do not know what options you're considering, so this is not a commentary on any of them. I'm just saying that there are certain things in life that *do* shatter our routine for a minute, and brain surgery is certainly one of them. Don't feel selfish about it.

[cyrmom2]

Hi Jesse.

Here is a summary of my experience with a translab...
My husband was with me during my 3+ days at the hospital and went home each evening by 8:00 pm.  He could have skipped the first two days since I was in surgery for 12 hrs and then sleeping.   It was nice to have him around after that since I was up and walking around.  No balance issues at all.  Surgery was on a Tuesday and I was released Friday after lunch.  My mom stayed for an additional 2 + weeks after my surgery and handled all of the things I normally do (car pool, grocery store, homework, baths, pets, cleaning, laundry, etc).  I was sleepy and moved slowly the first few weeks home, especially in the mornings, but then I had periods where I felt pretty good. We went to Starbucks and the mall the week after I was released. I was back to work and driving within 4 weeks. The worst part of the whole ordeal for me was dealing with eye issues. Extremely annoying, but fortunately my eye is okay now.

Hope this has helped you somewhat.  You sound motivated to recover quickly which is definitely going to help.

Best Wishes to you and your family,
Cyndi

[jaylogs]

Hello, I just recently had Middle fossa at House with Dr. Brackmann/Scwartz...There's not a lot more I can add to Lilan's post other than my experience I was pretty wobbly (still am to some extent a month later!) but I think they do require someone to be with you to walk the hallways in the hospital...safety thing I guess.  They also require a physical therapist to sign off that you can go "solo" so to speak after you've demonstrated that you can walk ok.  I didn't need a walker on my first walk but everyone's experience is different.  I had absolutely NO nausea and a pretty healthy appetite.  I didn't have too many headaches other than probably being forced to sleep in certain positions, my neck doesn't appreciate that!   If you have any kind of questions, you can PM as well! Hope this helps!
Jay

[cindyj]

Hi, again, Jesse...I had a translab, but as Jan pointed out, the recovery for the different types of surgery are the same typically.  We all vary with our recoveries, no matter the approach, however, as you can see from the responses.

I did not need assistance of any type to walk post-op, but it did take me three days to even attempt to get out of the bed due to extreme nausea.  The first time the physical therapist tried to get me to get up, I gave him a not so nice present, if you know what I mean.  However, once they finally did get me up, there was no stopping me! 

As to needing someone while still in the hosptial, I didn't "need" my husband, but it was comforting having him around.  Even though I did not look at or talk to anyone for the first three days.  Once out of the hospital and in the hotel, I was still quite nauseous and was glad that someone (my mom as my husband flew back home) was with me.  I did nothing but nap and take short walks.  Suppose I could have done that on my own, but was glad she was there...I will say that I'm normally a very good patient, but I'll admit I was a bit "needy" there for awhile. 

I did not do any therapy while waiting out there to come home.  I was simply waiting to get the sutures out and get the "all clear" to head home.  I did use a wheelchair in the airport when we flew home, but it was more for my mom's peace of mind than my really needing it.

Think you have my phone #, please feel free to call me if you'd like.  If I head up to Greenville to see Mom soon, I'll come knock on your door

Cindy

[Captain Deb]

Here's the thing--people with smaller tumors have a much more difficult time with balance because their other sides have not compensated yet.  With a larger tumor, say 2-3 cm, the balance nerve is slowly affected by the tumor causing the residual balance systems to slowly and gradually compensate for the loss.  Yanking a small tumor out suddenly really throws your balance system into a tailspin because of the sudden, instead of gradual, loss.  

I woke up with bad nystagmus (eye twitching) which took weeks to go away.  I also had unbelievable headaches which escalated over the next 9 months.  I had a wheelchair at the airport and it took about 4 weeks to walk unassisted.  I did not use a walker, but I hung onto walls or a person to get around.  I was very lucky to have round-the-clock care for a long time during my recovery.  I did not feel safe driving for 5 months. The headaches certainly hindered my recovery and kept me from doing much walking.  I feel my case was not typical, but folks need to be aware that it can happen.

Cpt Deb

[JerseyGirl2]

Hi, Jesse,

As you can tell from all the responses, everyone has at least a slightly unique reaction to the surgery.

I had a translab at House and was up and about at Seton Hall (and did some touristy things as well) as soon as I was released from the hospital. I was fortunate to have experienced absolutely no nausea, vision issues, or balance problems during my post-surgery hospital stay or afterwards.

And I'll comment on Captain Deb's post just above this one -- I had a small-to-medium size AN (~ 1.3 cm.) and my balance had compensated long before my surgery to the extent that I never experienced any balance problems either before or after surgery. I just spent a few minutes with the physical therapist the day after my release to the regular hospital room following the 24 hours in ICU, walking and doing the balance exercises, and he said I didn't need his help. I'm not gloating about this or bragging -- that's just the way it was. So I think that the location of the AN with regard to balance issues is as much of a factor as the size.

I was very happy staying in Seton Hall before my surgery and for the week or so following the release from the hospital prior to my return home. It was very reassuring knowing that the hospital and House Clinic were both nearby.

I didn't need a wheelchair at the airport, but it sounds like a lot of people do use them. One thing that my husband and I did -- and I'm very thankful -- was to upgrade to first class for the return flight from LAX to the Newark, NJ airport. We were able to zip through first-class security, which was near the airport entrance, and the extra space, fewer people, and more relaxed atmosphere in first class was worth every single frequent-flyer mile we cashed in. If you decide to go to House and have to contend with a long flight afterwards I would definitely recommend that.


Catherine (JerseyGirl 2)

[leapyrtwins]

Here's the thing--people with smaller tumors have a much more difficult time with balance because their other sides have not compensated yet.  With a larger tumor, say 2-3 cm, the balance nerve is slowly affected by the tumor causing the residual balance systems to slowly and gradually compensate for the loss.  Yanking a small tumor out suddenly really throws your balance system into a tailspin because of the sudden, instead of gradual, loss.  

My AN was almost 3 cms when it was removed and prior to my surgery I thought I didn't have balance issues; my neurotologist proved me wrong.  I failed all his tests miserably the day of my first consultation 

Post op my balance was one of my biggest issues - along with tremendous nausea.  Through vestibular exercises, and over time, my balance improved greatly.   

Like Catherine, I think that location is a big issue.

Jan

[Raven]

O.K....I will chime in with my recovery.

Went in for the first operation on a Wednesday morning (5:30), by 8:30 that evening I was in ICU, promptly puked while they were putting me in my bed. The next afternoon I was sitting up in a chair, still in ICU. They put me in a regular room the next day, I sat in a chair as much as possible and was walking to the bathroom by myself. The day after that I was walking around the floor I was on without a walker or cane, I was hanging onto the railing. Sunday (4 days later) I was discharged.

The original plan was to keep me in the hospitol for a whole week and do the second surgery, I recovered fairly quick so the Dr. sent me home.

Came back in Thursday morning (8 days after the first operation) at 5:30 am. Never made it to ICU as there were no rooms available, spent the next 28 hours in the recovery area. Basically everything was a repeat of the first recovery, sitting in a chair, walking around, ect. My Dr. was very pleased with my progress and sent me home on that Sunday.

Once I got home it was rest, eat, walk, rest, eat, walk, repeat........each passing week I got stronger. Never really had any headaches, any facial issues were all gone after about two weeks.

Hope this helps,

John

 Oh forgot to mention my balance, issues. My balance has never gotten any better and probably never will. The right side can't compensate because there is still a AN on that side. I did some excercises on my own that my Dr. gave me, I never did any therapy.

[Pooter]

Like others, I didn't have middle fossa, but I doubt that there is much correlation between immiediate after care needs between approaches..  Some with MF do VERY well and are up within days and need no help, others not so much.. The same goes for any other surgical approach.. It depends more on YOUR needs after a pretty major surgery rather than the approach used..

Contrary to some others, I liked having my wife at the hospital while I was there.  She was my advocate and was able to tell the doctor things that I couldn't (mainly because I didn't notice them).  For the first few days, I was pretty out of it (as those who were on this forum remember Jenni posting her own concerns about my recovery during those early days).  It took me a LONG time to get out of the anesthetic "fog" that I was in.. granted, my surgery was 12 hours long.  I don't remember ICU at all.  I vaguely remember puking once, but I'm told it was several times.  I was OUT of it..  Hindsight being 20/20, I'm glad someone was there to look after and OUT for me while I couldn't.  After that, she was there when I finally ventured up to walking the halls so I could go when *I* wanted to but not just when the nurse was available.

In my case, I'll be eternally grateful that Jenni was there with me as much as she was during those 5 days I was in the hospital after surgery.  If I stop and try to recall things that were going on in the hospital at that time, my most vivid memories (and joys) was that she was there with me and had my back, so to speak.

Regards,
Brian