Hi

[opp2]

I thought I should drop a note to say Hi since I've been browsing and posted a couple of times. I'm Nikki from a medium sized city near Toronto. I was diagnosed with left side AN after asking my family doctor to refer me for an MRI and then telling her I wanted to go to the US instead of waiting. Thankfully she was good enough to give me the referral.

April 14th I brought home my disc and of course I looked at it. From my years of anatomy and physiology study I knew that big white thing probably shouldn't be there.

As a result I was referred to a top notch set of surgeons here in Ontario. My only problem is I'm having trouble accepting their probabilities for facial outcomes and have recently been looking and have spoken to Dr. Friedman at House.

I'll let you know what I decide, but at this point it looks like I'll be making my 3rd trip to California sooner than I had planned.

Nice to 'meet' you all here.

Nikki

[Kate B]

Nikki,

Welcome to the forum.  Like you, I asked for my MRI too and turned up with a "white"spot too. We all know that feeling.

What size is your tumor?

I went to House too!

All the Best,
Kate

[Kathy M]

Best of luck to you Nikki!  You are doing just the right thing in checking options and finding what is best for you.   Glad you introduced yourself - keep us posted!

Kathy

[Jill Marie]

Hi Nikki,

Glad you posted about your concerns, there are lots of people here to help you deal with the what "ifs".  They will also be here for you when the facts are in.  If you don't mind my asking, what are the facial probabilities you are dealing with?  My doctor told me I had an AN and the day before surgery found out I had a Facial Neuroma, no time to prepare for the outcome.  It was probably better that way, no pre-worries just dealing with the outcome.  I have some permanent paralysis, can't smile, eye issues, use ointment constantly.  However, I have a full time job which shows I've worked around the issues.  My surgery was in 92 and all in all I'm doing fine, wish things were different sometimes but who doesn't, good luck! Jill

[msmaggie]

We have all been in your shoes, and we are here to support you as you find your way through this.  There IS life on the other side!  Let us know what you find out and we will walk you through it!

Priscilla

[CHD63]

Hi Nikki ......

..... and welcome to this forum!

You are so right to explore your options.  Getting the physicians with the most experience is so important.  I pray that it will all work out for a completely successful removal with an intact facial nerve.

Just know that we are here to support you in whatever decision is made and whatever your outcome.

Clarice

[EJTampa]

Not much to add except welcome to our group.  I too am curious as to the size, but realize that's not really what determines your outcome.  Glad you are looking into all of your options!
 
Ernie

[Vivian B.]

Hi Nikki,

I am also from Toronto, Thornhill. I initially went to Buffalo to get my first MRI done as I didn't want to wait 3 months for it. I was too anxious. Who did you see in Toronto? My next MRI is Sep 17/09. I am being followed at Sunnybrook Hospital. Let me know if you need any other information from the doctors I have seen there.

Vivian 

[opp2]

Thank you all for the welcome. My AN is 2.9 long and the "body" of you will is 2.1 is all around. It kind of looks like an apostrophe but the tail isn't so curled. I started suffering very funky headaches about 2.5 years ago. I would get these flashing lights in my eyes and I would have to wait as it spread from a pin point all the way out around my eye and disappear at the side. (20 mins or so) once the lights were gone I'd get this fabulous headache. I saw a neurologist for it and he said I had migraine. Easy enough to diagnose really since it fits the bill. Then I started getting a numbness in my left cheek and half my lip. I spoke to the dentist and the neurologist. The N said come see me if it gets worse. (  ) The dentist thought it was kind of odd and sent me to a dental surgeon, who after confirming no problem with the nerve in the jaw, asked if I"d had an MRI. She tried to get me into a neurologist and amazingly enough I got referred back to my same N. I then went to the family doctor and asked for an MRI.

During the past 18 months I've also found that when I stand up I get a pounding and rushing in my head and ears. If I sit down quick enough I can make it go away in about 10-15 seconds. If I can't sit down, I'll get the funky light show etc. This is pretty simple except that I'm a cop, so I can't just plunk myself down in the middle of a call.

About 5 weeks ago now I noticed I've lost the hot/cold sensation in my tongue on the left. I've had great sensitivity to all things hot and spicy for about a year. Not intolerable, just extra hot and extra sting.

I have moderate hearing loss in that ear which at the time I attributed to an incident (1998) where I fired my handgun without ear plugs. I suffered tinnitus right away and have had it since. Sadly the AN is too large to attempt to save the hearing in that ear.

I'm a 44 year old mother of 2 little ones, my youngest is heading to JK next week.

So that's my story.

oh and the only people that know around me are my husband, my parents and my mother in law.

[mk]

Hi Nikki,

I recall seeing your post on the ANAC board. Welcome to ANA as well.
There are quite a few of us here in Ontario. The size of my AN is similar to yours, although I only had the numbness/odd taste issues, and I have been fortunate that I am pretty much asymptomatic other than that. It is probably a matter of location.
There are some excellent options in Ontario (Toronto University Hospital Network, as well as an experienced team in London Ontario). Where are you from?
Having young kids and a demanding job is certainly a big worry, so I can understand how you feel. I had the same concern too, which more or less made me chose GK treatment instead of surgery.
You still have some time to do your research, although given the size of your AN it will probably be advisable to seek treatment sooner rather than later. Use this time to research your options as much as possible - and chose the best team possible, which should be easier if you are close to a major centre like Toronto.
As I mentioned already, there are many ANers from Ontario here, so they can probably chime in on the issue of doctor selection. Don't hesitate to send me a PM if you need more information.

All the best,
Marianna

[alicia]

Hi Nikki. I am sorry to hear you have an AN, but you are in the right place to find answers and peace with your decisions.  I had a large AN removed by Friedman in May of this year and I am doing great!  Please, ask questions and take deep breaths often   
Alicia

[moe]

HI Nikki,
Welcome to this exclusive club.
 So glad you got some feedback from fellow Canadians and also there are a lot of people from House.
We're here to offer support, be your sounding board, whatever
It's great to have a place to vent and ask questions, because we KNOW what you are going through and will be going through.
Maureen

[Jim Scott]

Hello and welcome, Nikki. 

Thanks for your posts and providing us with the particulars about your AN as well as some personal information.  Although I'm never happy to learn of another person being diagnosed with an acoustic neuroma, I'm always pleased when that person chooses to use the ANA website and participate in our forums, as you have.  This is obviously a time for conducting some personal AN research so you can make an informed evaluation of your condition and reach a decision regarding treatment (surgery or irradiation) the doctors you'll use and where you'll go for that treatment (Canada or the U.S.).  Although these are all serious choices and can only be made by you (hereafter known as 'the AN patient') we collectively stand ready to help you with information and advice (when solicited) as well as our full support for whatever path you chose to take from this point on.  Personally, I wish you all the best. 

Jim      

[tenai98]

Hi Nikki
I to am from Ontario, closer to Ottawa....The first ENT I went to said my unilateral hearing lose was due to aging...I was 47 at that time...I demanded from my GP to see an ENT of my choide in Ottawa upon which he did ABR and ENG test..Then he wanted and MRI to eliminate the possibliity of a tumor...but the wait would be 9 months...Noway was I waiting 9 months to a yr wondering if I  have a tumor or not...so I went to a private clinick in Quebec.  Having the cd I too looked at it and knew there was a tumor....I found this site and did my research...I went with surgery with the team of Benoit and Schramm. I have no facial paralysis, little balance issues unless tired or suffer from mid grade headaches...and wonky head still affects me every now and then..you've come to the right place for info...
Jo

[DR]

Hello Nikki and welcome to an exclusive club.  Unfortunately its not "that" kind of exclusive club.  I would have preferred to receive an invite to Augusta National...

You will find many, many helpful individuals here.  The amount of information I was able to gather in the first week or two following my discovery was amazing.  Thanks to the members of this forum and the ANA in general I have been able to set-up several face-to-face consults armed with the relevant questions and follow-ups.  IMO this would have taken me months, not weeks, without the good folks here.

I'm heading to House in mid-September for a consult with Dr. Brackmann.  Please let us know how your search progresses and remember that you are not alone!