ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: neuroma_racer on January 12, 2010, 02:02:51 am
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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
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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
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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
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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
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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
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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
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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.
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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
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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
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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 :o
Cindy
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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(http://i235.photobucket.com/albums/ee60/Captdeb_photos/emoticon___pirate_by_anya1916.gif)
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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)
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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
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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.
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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
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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
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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
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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
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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)
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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....
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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)
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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
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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