just diagnosed & *freaking out*

[heidi g]

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!   

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

[sgerrard]

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

[Migoi]

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

[cherrypiper]

whewwwwwww   lol 

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),

[Lyssa]

Hey Heidi,

Talk about freaking out!! I am 5 months post-op today 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  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.