Ontario, Canada AN meeting ..........

[Denisex2boys]

I know there are a few of us here from Ontario Canada with an acoustic neuromas that have either had or are awaiting treatment (ME) - - and I just thought I would all let you know that on May 3rd we are meeting in Kitchener, ON at Unitron - http://www.unitronhearing.ca/

I met with this group of people in October of last year.  I was a bit hesitant at first as they were all 'posties' and some of them somewhat 'older' than I - - but it was a WEALTH on information and they are very, very, supportive.

Our demographics and populas here in Canada is much smaller and whilst I have received a WEALTH of support from this board - I was so very happy to actually meet face-to-face with others who have faced this beast - - they are a great group of people and the discussions were wonderful - lunch will be served and the greet and meet (if I remember correctly) is approximately 3 hours.

As I am sure others will attest meeting others with this condition makes all the difference - it did to me anyway - - the reason it is at Unitron is because one of the guys that works there - his company offered up that location - since his wife (I would guess to be mid-forties) had AN surgery - Unitron is one of the LEADING research and manufacturing facilities of hearing devices ... see their link above.

ANYWAY .... if anyone in Ontario - or anywhere else would like to attend - - post below and I will email to you the contact info.

It would be GREAT to meet some of my fellow AN'rs here in the Great White North!........ 

[calimama]

Hi Denise...
You are not alone up here in Canada... and it's not so white anymore right!
I won't be able to make it, but i hope it is a success and helps all involved.

How are you doing? Where are you at in your journey??

I have now met with a hoard of doctors and need to get going with a big post on this site... soon...

Trish

[mikado]

Hi, newbie from Atlantic Canada.

X-Mas morning, woke up with room spinning when I attempted to change positons. Moving my head caused nausea. Trying to get out of bed was a logistical nightmare. Forced to cancel Christmas celebrations as I had lost control of my balance.

Family doctor diagnosis was viral, and he prescribed (novo-betahistine) an anti-vertigo med. Good call on his part, insofar as reducing the dizziness. However 6 weeks on meds did not
cure dizzy spells. Referred to Ear/Nose/Throat specialist who informed me I had a severe viral infection resulting in loss of hearing.

However, when he tested me, my hearing level was normal, wherein he advised me that was impossible. New prescription was to include daily Benadryl tablet in additon to the anti-vertigo meds. Due to my long list of allergies, I take a Benadryl tab every day, have for years. This is bizarre, but the specialist told me I saved my hearing with the Benadryl, not even knowing it was at risk. The right combo at the right time and who knew...not me!
Fact or fiction?

Referred for hearing test and MRI. Passed the hearing, MRI showed tumour pressing on cranial nerve #8. Apparently small, not cancerous, but requiring a neuorolgy specialist. Have been referred, waiting for appointment.

Help!

[Pembo]

Welcome to our club mikado! Your rode to diagnosis sounds much like mine. Constant dizziness was horrible for me and I was very happy to wake up from surgery and no longer be dizzy. Best of luck to you.

[LizH]

Hi All,

How was the meeting? I used  to live in Kitchener (5 years ago), not any more, now in Etobicoke west of Toronto. I wouldn't have been able to attend the meeting anyway. I am physically disabled now and sit in a wheelchair. Even though I had radiation 6 years ago, the tumor cells didn't die, the tumor didn't shrink, it has been growing since and causing me all kinds of problems. Waiting for a date for surgery now to get this beast out.

Cheers! Liz (Effiya)

[mikado]

Is surgery the ONLY option?

Am allergic to most drugs on the market, penicillin , sulfa, cephalexin, ranitidines.... the list goes on and on and on. My son had allergic reaction to Demerol after throat surgery. Grandmother was allergic to grass, almost died in Hospital from oatmeal bath
   
Carry EPI-PEN on my person at all times due to Anaphylaxic (excuse spelling) reaction at age 18. Apparently, ER  staff advised my Dad that had I arrived 15 minutes later, I would have died (Can't confirm as apparently I collapsed at the Admitting desk, due to my refusal re; the wheel chair) 
Had my gallbladder removed in 1980?...allergic reaction to all drugs and bandages.

Please tell me there is an alternative!

Thanks,
Di,

[calimama]

Hi Mikado...

You are certainly not the first person who's AN got missed or attributed to something else (allergies, congestion).

Hope you can find all you need here. It has been such a help to me.

Trish in Toronto

[sgerrard]

Is surgery the ONLY option? ... Please tell me there is an alternative!

Do you mean like radiation treatment? It is usually considered a good option for smaller ANs, especially if you still have hearing on the affected side. In Canada, it would probably be at one of the Gammaknife centers up there. There is whole section on the forum on radiation treatments.

Steve