New to the forum

[4cm in Pacific Northwest]

Satman super “8�

“Well not if you say it while walking away from me outside the room!
Look at me when you are speaking to me then I can hear you!�

Sound familiar? LOL 

Cheers,

4

[satman]

Good morning 4,
You are always on top of your game,
Sounds to familiar, kind of like "just be patient".

[Charlotte Lady]

JB-
I'd love to join a support group.   Let me know details, if you have any.  How'd you hear about it?

I know there are several folk out there in Charlotte with AN.  Dr Gold/Dr VanderVeer did three before me this summer.  Were you one?

Donna

[jb]

Hi Donna,
I ended up going the radiation route.  Got my AN zapped up at Georgetown in DC.  I have family and friends up that way, so it worked out pretty well.  Still dealing with some side effects like everyone else.

How did you like Gold and VanderVeer?  They seem to be a popular choice.  I'm looking for a local doc to follow up with since my treatment.

I got a notice in the mail from ANA prior to the Charlotte meeting this summer.  I just emailed the lady that set it up last week, but haven't gotten any response yet.  I'll be sure to send you a PM if I get any info.

[Omaschwannoma]

Donna,

Glad you're sense of humor didn't leak out during your surgery!  But hey, on the flip side......you mentioned watering eyes and I remember that one.  My optometrist mentioned to me that watery eyes means dry eyes.  They're overproducing to compensate for the dryness.  I use GenTeal Gel at night and during the day, but the amount put in during the day is small as this tends to cause blurring for a bit.  Other people have used drops, but depending on how dry they are one has to continually drop the drip vs the gel form that lasts longer.  Good wishes to you.

[Susy]

Hi everyone, I am up in the cold north of Canada, have had 3 aud. tests with hearing loss right side, plugged sensation, numbness and pain.  Have MRI this Monday Dec. 3/07 at 8:00 p.m. and appreciate the information here.  Am terrified of course, and keep trying to remember what a former boss of mine said "all the worry in the world won't cahnge the outcome" .... so am just trying to keep going.  My ENT was a *** at the first visit, and fluffed me off but I persevered through it and demanded another visit at which I blasted him for his previous attitude (I remained calm while blasting), and expressed grave concern at not being taken seriously.  He was so upset that he had come across that way... anyway, he did some tests ... I could not keep my balance, was able to explain the swallowing problems and was taken seroiusly.  This doc is the HEAD of our ENT department too (I work in the hospital system here) ... so I was glad to see a change of attitude, and now know that if the MRI does show an ANA I am to ask for a neurologist specializing in this surgery.  My followup appt. with the ENT is December 11th so I will post again after that.  My aud. said that the tones I am losing are not consistent with her experience with tumours ... but everything else points to this. 
Thanks for listening - Susy (aka Scared in Ontario Canada)   

[lori67]

Hi Susy.  We will definitely be thinking of you on the 3rd when you go for your MRI.  I'm glad you stuck to your guns and demanded to be treated the way you should be treated - and not ignored!  It's normal to be scared when it's your head in question.  I think every one of us felt that way. 

It seems to me that the only consistent thing with AN's is that the symptoms are inconsistent.  I'm glad you're getting the MRI done - make sure it's with contrast.  I will keep my fingers crossed that everything comes back fine.  Please let us know how it turns out.
Lori
p.s.  I'm afraid to ask HOW cold it is in Canada right now!  It's cold enough for me in Tennessee!

[4cm in Pacific Northwest]

Welcome Susy,

It is amazing how many of us Canadians come to the American forum here … currently I am residing here and was fortunate to have finally located some good honest and sincere doctors here in the USA who had “the patientsâ€? best interest truly at heart (one even a Canadian    ).

Before you reinvent-the-wheel on the “searching for surgeons� thing know that there in Ontario you have some of the world’s finests right there in your snowy and cold back yard.

“Ifâ€?  it is an acoustic neuroma I suggest that you skip past the ENT and connect with a "neurosurgeon" and a "neurotologist" (worth speaking with both- as those are the best qualified to do this sort of treatment… and can help you choose your options. (Some AN patients have more options than others based on size & location of tumor... and their overall health, age etc...)

Here are a couple of world class reputable surgeons you may want to approach … again… “If “ you show positive for an AN.
 (I will add you to my prayer list that it will not be positive)


Julian M. Nedzelski, M.D., FRCS(C), Otolaryngologist-in-Chief
Sunnybrooke Health Science Center
U o T former Chairman of, the Department of Otolaryngology,
Faculty of Medicine, at the University of Toronto.
Sunnybrook campus
2075 Bayview Avenue
Toronto, Ontario
Canada M4N 3M5
Telephone: 416.480.6100


I suggest that you speak with your ENT and see if they can set up an appointment for you with Dr. Nedzelski and ask him to look at your case – specifically.
http://www.sunnybrook.ca/departments/ent/healthteam


You will see he is world renown for his expertise in AN -on this list
http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=hstat6.section.55342

Another top notch world renowned surgeon is at University of Western Ontario Medical School:
Dr. Lorne Parnes.
 http://www.uwo.ca/ent/BIOPARNES.pdf

( Schulich Department of Otolaryngology) 519-663-3421
http://www.schulich.uwo.ca/ent/

Know that by being an Ontario resident you are in a good position- being that some of Canada’s best resources, doctors, and facilities, equipped to deal with Acoustic Neuroma, are actually right there in your province. (I won’t even start on all the out-of-pocket expenses occurred over my AN research – many Americans choose treatment options based on financial resources and insurance … you have a health insurance coverage that many Americans do not have). Trust me if you have OHIP- you are at an advantage up there.

Acoustic Neuromas are not typically fast growing – and know that you can take time to understand what you have, what are the best treatment options FOR YOU (every case is different) … and on this forum are some great understanding people. Know you are not alone and there ARE people there for you- we all just happen to reside in different geographical locations and the forum is what brings us together. (What did AN’ers do before the internet?)

Once you find out what the prognosis is -after the MRI (as to not overwhelm you) I can direct you to some more resources (alongside others on the forum).

I can tell you that by finding this ANA forum here -you are already a step in the right direction.

4

[yardtick]

Hi Suzy,

There is also Dr Rutka at the Toronto General.  He is a neurotologist.  That's who I see and he is excellent. 

I hope they are going to use the contrasting dye when you have your MRI on Monday.  I will be thinking of you. 

Lori,

Today in Southern Ont we had snow streamers of Lake Ontario and it was -3, windchill -10.  Chilly to say the least, but it will get colder before it gets warmer!!!

Anne Marie

[lori67]

Oh, that's cold.  That's beyond cold.  It's funny to think my grandparents came from Canada.  I don't think I inherited any of their genes!   

I grew up in the Northeast, but live in Nashville now - it's funny to watch the whole city shut down because of 2 flakes of snow.

And once again Susy, good luck Monday!
Lori 

[4cm in Pacific Northwest]

BRRRRR!

Warm hugs to my fellow Canadians!

Anne Marie, I forgot about Dr. Rutka you had mentioned before. I was not sure if he was a neurotologist or a neurosurgeon…

Here is the phone list by name
http://www.utoronto.ca/otolaryngology/faculty/faculty-alpha.htm



4

[Susy]

Hello everyone, and THANK YOU.  My ENT is also an otolaryngologist, and again, head of the hospital department here, and he wants me to come back to see him on December 11th (next Tuesday) and HE will give me the results of blood/MRI tests AT THAT TIME.  Now, are you saying I can ask tonight after the MRI what the results are?  i highly doubt they will give them to me (and I have a call in about the contrast) then and there - and the waiting will be sheer agony. 

I am very grateful for the physician/surgeon information in southern Ontario - especially Toronto area.  Nothing seems to feel "right" at the present time, truly so many have you have been through this and come out the other side a bit weary but intact. I won't mind having some permanent hearing loss, I just want resolution.  Today I am nervous of course, and my ear is ringing in a high pitch frequency, and I can't stop choking up, my swallowing has been the worst this weekend, with spasms going right through to my back. 

Enough complaining - we had a small blizzard hit us where I live, couldn't get doors opened, and then a nice coating of freezing rain.  After hours of snowblowing and shovelling, a pleasant RAIN STARTED TO FALL melting most of it ... sigh.  Such is life. 

Tennessee??  It is lovely, I have travelled all across the states and loved every minute of it, but I simply cannot take the heat even our Canadian summers are unbearable, I don't have an exotic bone in my body and should be wearing viking horns on an ice floe.  Hmmm - sounds like fun at this point in time ... will report back tomorrow.  And again - thank you from the bottom of my heart for your support and knowledge and sharing.   

[Susy]

Hi, popping back in - talked to the MRI department and NO CONTRAST is being done.  She explained that that was the Radiologist's decision, he received the requisition from my doc, and made this evening appt. for less serious cases ... and that if once he reads them - they would decide if a daytime MRI with CAD could benefit me ... so there you go.  The radiologist made the decision based on the information provided by my ENT Otolaryngologist .... again, will report back tomorrow - they will NOT give me any information today, that strictly has to come through my ENT OTO at the December 11th appt. - it will be read and ready for him within 10 days.

UGH - Susy 

[Susy]

back again, had MRI monday night, got a call to come back for MRI with contrast dye and a CT scan on thursday.  went back on for those feeling sick.  nobody will tell me anything until the 11th - and the MRI took about 45 minutes as they had the radiologist reading and asking for more shots.  i am hoping it is the earring i lost in 1985 ...
will report back after the 11th.  weird thing was the tech who did the IV was all friendly beforehand, after he wouldn't make eye contact and spoke to me as if i was deaf - again, ugh.  but will wait and see.
susy

[4cm in Pacific Northwest]

Hang in there until the 11th.

Try to have some fun this weekend and forget about it until you hear (I know that is hard)

We ARE here for you.

4