ANA Discussion Forum
General Category => AN Issues => Topic started by: heidi g on June 24, 2009, 01:31:00 pm
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so, this is my first time finding this board. yea! i have joined one specifically for ohio (all 4 members have the same doctor as i do, which is helpful). the thing that is NOT helpful: my doctor being out of town right after diagnosing me & then his office moving after he returns into town. so i was given this dinosaur of a diagnosis, scheduled surgery for july 28th (at ohio state university) & am now suffering from severe anxiety. anyone else have anxiety? i'm on some anxiety meds, but they knock me out, so i can't take them during the day. anyway, don't want to whine! i do have two kids, girls, ages 2 1/2 & 10 months; i am 28 (hhmm, will be 29 at time of surgery), married to a very kind & helpful (& good looking, lol) man for 6 years.
what i am wondering about is why some of you chose the surgery over the other options. my doc explained that with my tumor size (10.2 x 13.9mm) & then my age, surgery is the best option. with the material he gave me, i agree. but i am still freaking out about this surgery. i mean, they are cutting into my skull, pulling something out of my brain with nerves wrapped around, eh?! (i am not usually a freak out person, either, btw. childbirth twice with no pain meds & pitocin, i think i can handle the pain & being calm under pressure part). this has just thrown me for a loop.
what advice does anyone have?
what post-op symptoms were most pervasive? i know it's different for everyone...but does it seem that the symptoms you went in with are the ones that you suffer the most with post-op? i don't exactly have time to search & read the previous messages (lol, i have two kids under 3, 'nuff said).
also, does anyone have advice on what areas others can help out with post-op? my mom plans on being here for up to 6 weeks if needed. i guess i'm just wondering what level of activity most patients usually have...
AND, lol (will i ever stop?!) what symptoms lead to your diagnosis? my story? i have had dizziness/passing out for years now. severe nausea (diagnosed with ibs, but wondering if that's not true, but more tumor related). the whole ringing in the ear. pressure in my head. migraines/headaches that are not solved my over the counter stuff or migraine pills. hearing loss. inflamed optic nerves. visual distortion. doctor after doctor have told me these symptoms are not really anything to get worked up about. then my NEW eye doc spotted the inflamed optic nerves, sent me to a (jerk) of a optical neurologist at OSU, who said the inflamed optic nerves were from 'my german ancestry but lets do an mri of the brain to be sure'...he called me back 2 weeks later to say i had a 'growth' in my ear, nothing to be worried about & then sent me to dr. welling (otolaryngology...apparently he's "the dude" in this type of surgery in ohio & has been doing research/surgeries on this for most of the time i've been alive). that's the story.
any thoughts, helpful ideas, inputs?
thanks in advance if you took the time to read this!
-heidi
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Heidi,
I remember the feeling. . . . Breath. I know it sounds very scary but it's really going to be ok. I chose surgery over Gk/CK because my tumor was large and pushing against my brainstem. That's not a good place for radiation, haha. So, as the doctor said, there was really no choice, that's just what was best. If your tumor is under 2cm and in a good area you might be a candidate for radiation. But surgery isn't as bad as you might think, at least not after the F3D (first three days). I do daycare so I know what you are dealing with as far as small children. I was back taking care of 5 kids between the ages of 9 months and 4 years at 6 weeks post-op. Of course that's just me and it might not be the same for you but you are young so you will have a better chance of bouncing back fast (I'm 50+ and still did ok) I'm sorry your doctor is gone but to tell you the truth there's probably not much he can do for you right now. The people on this board are probably your best bet. I would be lost without them. Hang in there. We have been where you are and we'll be here for you now. this is a great bunch of people.
Julie
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Hi Heidi,
Sorry to hear about your AN - but WELCOME to the this group - and, as Julie stated, the folks here are FANTASTIC! ;D
(I am here with my sister, boy isn't that weird.)
Anyway! As Julie suggests, first take a DEEP breath....now another one....
Many others will chime in about surgery and how it works, how to handle it, etc. I am still in W & W mode (Watch and Wait)
However, your tumor is small, and if i were you, i would entertain the idea of not rushing into anything. After all, ANs are generally slow-growing and mostly benign. [I know, i have been misdiagnosed over 12 years, starting with hearing loss.] Hearing loss and/or fullness in the ear (like water that didn't drain out after being in pool or shower) is often a first symptom. But some folks have no real symptoms. Others find out they have an AN when they have an MRI for something else. Some 'small' ANs are small but mighty! Some large ones, not many symptoms. It just depends on location and how it is pressing on the nerves.
I know there are others who will help you with all your surgery questions. In the meantime, know that we are all for you.
And i believe that in my heart, 2nd (and 3rd, and 4th, etc.) opinions are not necessarily a bad thing. Experienced docs (with LOTS of experience) are the ones you are looking for. Also, it is good to see a doc who does both radiation and surgery. The neurosurgeon i saw actually thought i am a very good candidate for radiation. Of course i am 50ish, but my tumor is about the same size as yours.
The AN journey is just that, quite a journey.
Keep posting, please. And feel free to send a PM if you need to - (Private message.)
Sincerely,
Sue
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Heidi ......
Welcome to this group of ANers and the wonderful support it gives to those of us in a rather rare, unique situation.
First of all, as the others have said, try to stay as calm as you can. It is reassuring to me that from the description of your very troublesome symptoms for a very long time, you now have a diagnosis and it is a relief to know it can be treated.
You have over a month before your scheduled surgery so you have some time yet. Just wondering, did your doctor say your AN is in a location that radiation is not a viable option? Frequently with ANs of your size, radiation is an option unless already pressing on the brainstem.
My AN was larger than yours and was an unusually rapidly growing one (most ANs grow very slowly) ...... plus I really just wanted the thing out of there, so I readily went along with the advice that I have a surgical removal, via retrosigmoid approach. I had excellent success. Pre-op symptoms were balance dysfunctions and sudden hearing loss ..... no headaches and no tinnitus. Post-op I still have mild balance issues, retained 20% of my hearing, significant tinnitus ..... but NO headaches still.
Six weeks recovery time post-op is kind of the standard for any surgery. Much depends upon how you do and your individual family needs. With two little ones, I would hope your mom could stay at least six weeks. You may feel great if you only had to take care of yourself but leaning over and picking up little ones while maintaining a household will make you very tired. Fatigue seems to be a universal post-op or post-radiation phenomenon for us. Can she arrange for longer, if needed?
My thoughts and prayers are with you, especially for peace as you await your treatment date!
Keep posting to let us know how you are doing!!
Clarice
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Hi Heidi,
I too "freaked" when I got my diagnosis. Trust me, I had my share of meltdowns, but I am doing great now.
The best advice I would give you is to do as much research as possible. Like Sue, I think getting additional opinions is important. I saw 3 surgeons before I made my decision. They all told me something different, so I had to go with what made me comfortable. A short recovery time was important to me, I was already almost deaf in my AN ear, so hearing retention was not a concern. Make a list of what's important to you, and discuss them with your doctors.
Don't hesitate to ask questions here, there's a lot of experience on this board ;D
Lisa
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Hi Heidi and welcome. Truly. I'm sorry you have joined our ranks but I am so glad you found us. As you can see, everyone is very helpful, knowledgeable and the best part, truly truly supportive. I don't know what I would have done when I was diagnosed if it weren't for these forums (and that was 4 years ago!).
yes, as Sue (suboo) noted, your's is deemed small. I know you are feeling anxious and anything I may say may not help, but I can share this. Mine was just a wee bit smaller than yours (10mm x 7mm) and I did all the research I could... to truly see what I was up against. Please take your time to read a bit here... and if it becomes "info overload", just take a step back for a breather, then forge forward again with research. We are all here to help.
Please hang in there... we're here for you.
Again, welcome.
Phyl
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Hi Heidi:
First of all, hugs and welcome to this fantastic group. You WILL get through this - one day at a time :-)
I would agree with the others that you will want to have your mother stay at least six weeks....
Another bit of advice, if you have friends offer to bring meals to your home, do some cleaning, etc., grab the offers because your mom will need a break as well. I stayed with my parents in a quiet environment for five weeks before heading home to hubby and five young boys. I really had to learn to let people do things for me.
All the best - soon you will be on this board as the one offering advice!
Cecile
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Hi Heidi ;D Welcome to the AN Club, sorry you had to join but know that you aren't alone at all. There is a wealth of knowledge and experience on this board. Read a lot and ask LOTS of questions!
My story is that I started having hearing loss and slight vertigo last November. Saw my regular doctor a couple of times, then an ENT a couple of times, had an MRI at my request in February and now I'm almost 3 months post-surgery. I had no ill-effects from the surgery other than the SSD (single-sided deafness) and I expected that. I have four little kiddos at home (5,5,3,1) and was back to caring for them myself after about 4 or 5 weeks. My husband was able to stay home with me for two weeks, and went back to work in the afternoons the third week and after that my mom came over for a few hours a day for two weeks. She probably didn't have to do that but it was very nice to have that extra help.
Again, glad you found your way here, I know you'll get your questions answered, that is the questions that have answers. Best wishes on your journey! You can click the little world in my profile on the left <-------- and read my story if you want.
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Hi Heidi,
Welcome ??? >:( to a great forum.
Sounds like you have a whole bunch of symptoms, for having such a small size tumor. I couldn't believe it when I read all your symptoms! And I can't believe that the docs were unconcerned.
That German comment wasn't even funny. Docs need to take at least 2 courses in bedside etiquette (or office etiquette )
The optic nerve is actually one of the cranial nerves (I googled that). Is this tumor an acoustic neuroma tumor, were those the exact words?
Needless, we are here to answer questions and give support.
I'm curious though why it has to be done in July if it is indeed an AN and so small. (Your symptoms may be the reason.)
You must be going :o with 2 little ones in the house to take care of and worrying about all of this. You probably don't have the luxury of browsing and looking at all the options. But I agree it wouldn't hurt to have a couple of opinions.
Hang in there and remember it is a small benign slow growing tumor. It is not going to "take over". Just a matter coping with all your symptoms.
It is all so overwhelming. You are young and the tumor is small so you should breeze through the surgery.
The thought of brain surgery is pretty scary, but really, all you do is go to sleep, wake up, and take lots of pain meds if you have to! And you take it real slow.
It's probably harder for loved ones just waiting during the surgery.
Anyway, we're here for you!
Maureen
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Heidi,
First, welcome. Second, calm down. Did your dr. give you any alternatives other than surgery? Some people wait and watch especially at your size tumor. Mine was 1.2 cm x 1.1 cm. It didn't start where they usually start so it was already pressing on the brain stem. Do you know where yours is located at? I can tell you with 2 young children you will need help. What kind of surgery approach does he want to do? This is a great forum to find out info. In my opinion the first 2 weeks after surgery were the hardest, the first 3 days being the worst. I ended up with a complication that shouldnt have happened which made it worse. But it does get better as time goes on. Feel free to pm me if you want to know any specifics. And remember, everything will work out.
Lois
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Hi Heidi and welcome to our club.
MY story goes like this....I had some slight balance issues, tinnitus (not bad) and twice had fullness of the ear and noticeable hearing lost. I went to my GP and sent me to my local ENT who told me hearing loss was due to old age (47at the time) and to get use to it. I was miffed..so I went for a second opinion. The 2nd ENT ordered a MRI, but before he was able to dx me, I did some reseach on my own and new before confirmation from ENT that I had an accoustic neuroma. (also had my MRI cd on had to help me). When I first logged on here, somehow I ended up in the headache section. After reading a few threads I was like NO WAY was I having surgery...but then I read more and ended up with surgery..Surgery removes the tumor while radiation stops it growth but remains in the head. So as I wanted 'Booger' out of my head I opted for surgery.
I"m 3 months post op. I had no pain and only took reg. tylenol, its what the doc ordered. I was shocked with that after reading on here that some are on morphine. I kept waiting for the pain to come but it never did. It was uncomfortable but not painful. ONly postop problems now is constant ( but slight and annoying ) dizziness and balance issues. I do have some again light facial numbness (only feels numb) and of course SSD which isnt as bad as I thought it would be.
Breath deep and take one day at a time knowing its benign and curable...there is life after AN
JO ;D
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Helllo Hedi and welocme to our group.
Feeling overwhelmed and completely stressed out? I think I can safely say, that was how we all felt when we got our diagnosis. Although I am not a doctor, I would have to say that because your AN seems to be causing so many problems (although not all of them are necessarily from your AN), it is probably better to treat it sooner than later. I understand you have two small children, but you need to make some time to do a little research in order tomake an informed opinion. Having consultations with other doctors, both surgeons and radiation oncologists is important unless you have so much faith in your doc and your decision that you feel in your gut that this is the right choice for you. You will see that in the end, our "gut feelings" are how most of us made our treatment choice. This is truly not a choice to be made lightly or out of panic. As others have said, this is a small, benign and slow growing tumor so you do have time. Feel free to ask any and all questions, vent, cry and laugh with us. Laughter is the best medicine and makes you feel more in control. Hang in there, you will get through this.
Best wishes,
Wendy
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Hello and welcome Heidi ~
I sincerely hope you find the time to read this message. :)
I'm sorry to learn of your manifold problems and difficulty obtaining a firm AN diagnosis but now that you have it that should be a small relief. I'll reiterate what others have stated, because its important: an acoustic neuroma is almost always non-malignant (not cancerous) and doesn't 'migrate' to other parts of your body. It is eminently treatable, either with microsurgery or irradiation - or sometimes, both. The mortality rate during AN removal surgery is almost infinitesimal. You can look it up. :) You asked why some of us choose surgery. In my case, my AN was too big for radiation and was pressing hard on my brainstem, making it ineligible for radiation. However, my neurosurgeon presented me with a plan to, first, perform a partial resection of the tumor, cutting off it's blood supply and rendering it small enough for radiation. That went very well (no complications) and the radiation (FRS) treatments seem to have been successful, too. Again, no real complication from either procedure. That is not always the case, so I consider myself blessed.
Your anxiety is quite common and understandable. Everyone handles this diagnosis differently. I believe it helps to research (as others have suggested) and try to gain some sense of control over the situation. Having very young children to care for makes that difficult, I know, but it's imperative that you get out in front of this or the anxiety will likely remain and probably intensify. You definitely should consider having more doctor consults to give you a better perspective on your AN as well as to find what, if any, options may be available to you and if surgery within the next month is really necessary. I'm not a doctor and can't advise you on strict medical issues, but consulting radiation oncologists as well as neurosurgeons will give you the information you need. Seeing one doctor who schedules surgery within 30 days and leaves you no options (while he leaves town) is grounds for anxiety, but your taking control of your AN situation will certainly help alleviate that to some extent. Remember, this is your body and you'll have to deal with the consequences of the surgery. Don't be pushed into anything.
My symptoms were a slow-but-sure loss of hearing in one ear (my left), increasing loss of equilibrium, sudden loss of taste (with a subsequent 30+ pound weight loss) and sharp, intermittent 'shooting' pains on the left side of my skull (the 'AN side'). When an MRI scan 'discovered' the tumor my AN was 4.5 cm and my doctor thought it may have been growing for 10 to 15 years. That is quite possible. Acoustic neuromas are notoriously slow-growing but because of their location - on and around cranial nerves - troublesome, to put it mildly. :)
It's clear (from your post) that you experienced the kind of mis-diagnosis that is, unfortunately, all too common with AN patients. The optical neurologist at OSU who blamed your 'German ancestry' for your eye problems is beyond ridiculous. Sometimes you simply have to wonder how this kind of person ever got through medical school. This is why we always advise AN patients to research and be pro-active with their AN issues as well as their general health. If you do end up having the surgery, your helpful husband will be a true asset to you. The fact that you consider him good looking is a bonus! ;) Six weeks is the general time-frame for post-surgery AN patients to recover enough to resume their normal activities but total healing can take a year or more. Balance exercises and lots of rest usually do much to help the post-op AN patient regain their equilibrium and their strength, assuming there are no major complications resulting from the surgery.
Again, Heidi, I trust this lengthy message is not only read by you (I know your 'free time' must be limited) but proves useful in some way. We're here when you need us. Please consider this website and these forums as a resource. We not only welcome you (regretting that you have an acoustic neuroma) but want to help in any way we can. We're a basically congenial bunch and come from all over (including overseas) and every part of the U.S., from all walks of life and all ages. Every race and creed is represented here at one time or another. We don't discriminate on any level and we all share a common bond - an acoustic neuroma diagnosis. We just want to advise, help and support you however we can. Don't be shy about asking. :)
Jim
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Hi Heiidi,
Welcome to the forum and I am glad that you found this wonderful group of people. The symptoms that you are describing are very familiar and as you read some of the posts you will see that many of us suffer from the same. The initial shock will wear out and you will start to think about your options collectively. At first, it is overwhelming but you need to keep reiminding yourself that this is a benign condition and it is treatable. I would do some research on radiation treatment and maybe get a consult with an oncologist in your area to get all the information on your treatment options prior to making a decision. Feel free to post any questions that you may have, everybody is extremely helpful and trust me when you are having anxious moments and become confused, you can always read some of the previous posts or ask questions. It's been 3 months now that I have been diagnosed, and the anxiety is geting better, still there but I can control it now. You will get there too. Keep us posted on what you decide on.
Vivian
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Heidi -
it's typical to feel freaked out when diagnosed with an acoustic neuroma.
But take heart, there is life after an AN.
Welcome to the forum,
Jan
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thanks to everyone for your words of encouragement & stories. i'm sure all of you realize how important it is to hear them both!
last week i was able to meet up with another patient of my doctor (we met on an ohio chat board for AN's & she lived near me). for some reason it was just a huge relief to *see* her & my mind was sort of put at ease. i guess thinking 'there is life after this surgery, after all'. she was taking care of her kids, driving hours away to meet me, working, etc. you get the drift.
& i have also had some time to read more info about this AN. i do think surgery is the best option for me. i'm sick of these symptoms! i know i could have different ones post-op, but still, it's worth a shot. plus i just want it OUT. this doctor is one of the best, that i have discovered & my husband & i are meeting with him AGAIN for him to simply answer our questions & his secretary (who's like a doctor or something?) will answer my emails & then call me within the same day. it's all good. lol
i guess what i'm getting at is that my anxiety & initial shock is waning & i feel more secure in my decision to have surgery. not to say i'm still not scared of it...you know, my brain area being fiddled with doesn't sound fun! but i'm also learning that distraction is great. & so are anxiety meds! ;D
i'm sure i'll be checking back here, reading about others' surgery experiences & post-op stories. thanks again to all who responded. it's just good to know "others" are out there (& are so dang kind!)
-heidi
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Hi Heidi,
Sounds like you are past the freaking out stage, anyway. :)
I remember posting about Dr. Brad Welling back in October, and dug up the posts and links. We had a charming young woman named Carson, who reported on her dad, who saw Dr. Welling and did very well. Here are some links on that story:
http://anausa.org/forum/index.php?topic=8000.msg85722#msg85722
http://anausa.org/forum/index.php?topic=8191.msg88187#msg88187
Early on I posted some links for her, referencing earlier comments on Dr. Welling from previous patients:
http://anausa.org/forum/index.php?topic=7787.msg82625#msg82625
A little browsing on the forum and you will realize that many people have been through the surgery and are living happy full lives. You will too. There will be days when you sincerely wish that you had never had an acoustic neuroma, but they will pass.
Best wishes and welcome to the forum from me, too.
Steve
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Ever since my diagnosis of having an AN, I've always thought you would have to be fairly odd to not freak out at least just a little bit upon finding out you have a brain tumor. The whole "it's non-cancerous, it's slow growing, there are options and time to make good decisions" talk really meant little to me for quite a while...
Disappearing medicos in the early stages of this journey can be very disconcerting. Increased tinnitus got me to the audiologist. An asymetrical audiogram got me to an ENT and an MRI. The call from the regular ENT to give me the MRI results and refer me to another ENT/ Otological surgeon ended with "He will be in touch with you soon to explain what this is." Soon turned out to be just over a week...talk about freaking out. I grew up around cows and have been kicked by one more than once...8 days of feeling like a hourly gut kcik by Bossy.
The other side is... yes, life can be good post surgery/AN. There are challenges to be sure, but the great thing is you get to decide how you react to those challenges... my choice, crash into the challenges head on with a song in my heart and a mischevious glint in my eye. It's working so far.
As the others have said...sorry you HAD to find us but glad you did.
Take care..tim b
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whewwwwwww lol :D
hi there. i had my surgery 19 months ago. i can answer a couple of your questions i think.
my demographics are far different then yours.i'm 56 at time of surgery, college prof now by trade. but i opted for surgery for a few reasons.
1. if gamma knife didn't work well, 6 months later they could re do that OR go crack the old skull open anyway.
2. i was already completely deaf on my rt AN side so loss of hearing wasn't a concern for me.
3. my tumor was about the size of a big almond and shaped along my nerves just like that.
now post op:
i was useless around the house for 4 weeks. i still leaned against walls, needed help everywhere.it was and is much worse at nite for me then during the day, even driving is different now. i still have little or no recollection of most of those weeks. i remember Christmas , only because kids and wife were glad to have me home. my surgery was dec 3rd.
i still have facial issues, not near as much as even 6 months ago , but my rt eye will never work as well as it did pre surgery.I have a hard time with tears building up in eye and it doesn't blink like normal so if i am reading or typing like this i have to force my eye to blink every 10 minutes or so.
my rt side of face still doesn't work much, no frown lines in forehead, cant move rt nostril or corner of mouth that kind of minor stuff.
BUT and i don't mean to scare you, when i came home? every one thought i had had a stroke or Bell's palsy. Face was 1/2 inch to maybe a little more in sag mode then.
its been a week by week, month by month getting better. and don't expect to just jump back into life 101 in 6 months either. its going to take awhile for the body to sort itself out......
cant whistle (NBD i never was good at that LOL),
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Hey Heidi,
Talk about freaking out!! I am 5 months post-op today :D I was 25 when diagnosed and 26 when I had my translab surgery in Feb. '09 to remove my 2cm AN. I had the same sort of situation, woke up one day with like zero hearing in one ear, went to the fam doctor, ENT and actually drove down to Buffalo NY (I am in Ontario) for the MRI b/c my awesome (sarcasm) ENT decided waking up with no hearing one day was normal and put "elective" on my MRI form. I paid $500 for the MRI even though our health insurance would have covered it here in Ontario.
Anyways, when I finally got the results from the ENT she was like confronting me on why I went to the US to get the MRI, I explained I just "knew" something wasn't right in my head, so she's like "well there is something there, it's an intercranial tumour, go see this Otolaryngologist, til then that's all the info you're getting", so I was left to my own devices to research this online (very scary, I know!!)
I remember going back to my office that day and closing the door to have a private little cry fest, the first of many leading up to surgery.
Anyways, the point I wanted to make and now I'm rambling, is that my neurosurgeon was so cool, calm and collected he was like "listen, you're more likely to die from getting hit by a bus than this surgery, it is not a difficult procedure just very long and precise." Well that took a load off for sure.
But, it is SO much easier on the other side, regardless of what option you end up choosing. It's almost harder that there are different ways to approach it because you're always wondering if it's the right decision, but everyone is different.
I was walking the next day and home from the hospital on day 5. I was on facebook less than a week later and starting to feel more like myself after a few weeks. I definitely milked it w/ my husband and got out of taking the dogs out for their morning walk for like the rest of winter ;D I got mild headaches for 2 weeks post-op and haven't taken anything since then. My face is still paralyzed on one side, but my AN was so intertwined with my facial nerve that they actually thought it was a facial nerve tumor after the surgery, although pathology tests showed it was schwann cells, so they're not really sure.
Anyways, you will be OK and as everyone else has already stated, this is the thing to have if you're going to have a brain tumor. :)