New diagnosis and scared silly ....

[Denisex2boys]

Hi everyone .... I am so grateful to find a site for support.

I am 43 years 'young' and I have a 7 and a 3 year old (boys).  I live in Ontario Canada and right now feel scared, upset, in dis-belief, anxious - you name it - I feel it.

A bit of background .......  I was grocery shopping with my 7 year old in Dec. '06 and I literally felt my left-ear close up - pressure, conjested and deaf.  It was an immediate and has never really come back.  Here in Canada there is usually a waiting list to get in to see a Specialist and I already had an appt. booked with an ENT for April (for a total different issue - my sinuses)..... I also belong to a 'mommy board' and when I posted about my symptoms my one mommy friend told me to 'google' acoustic neuroma as that is what her fathers tumor was diagnosed as being.  I had never heard of this before - so I learned every possible thing I could about it and I seemed to have a lot of the symptoms ..... deafness in one ear (hearing test show 25% left), some 'buzzing' and then some facial numbness started but would come and go in waves.

Fast forward ..... I went to the ENT in April and he suggested an MRI - since I had already read and studied what an acoustic neuroma was - and how rare it was - I figured it would be ruled out and they would take this as being a virus.  I had the MRI on the 25th of June (they got me in - in 4 weeks - wait times in Ontario, Canada are ususally well over 200 days) - but I suspect my ENT thought this more than a virus when the facial numb feeling started.  I did not hear anything immediately after the MRI so I assumed it was nothing - I had my follow-up yesterday and that is when he told me (and showed my on the MRI) - that I had an 1.5 - 2 cm neuroma.  I have also started getting annoying headaches .... every day - I feel like I live an Advil.

I was in complete shock - at first I did not react and then I started crying ------- I called my husband on my cell and told him he had better get there .... I still cannot believe this ...... I need to go to London, ON for assessment and he told me that because of my age and the fact that it is not that big they will probably recommend surgery .....  I am more scared about the initial assessment and what they may say may happen 'after' the surgery .......... 

Any support, advice, friendship would be appreciated .......... oh yes, and one thing I forgot to ask the ENT - how do they know it is benign - is it the placement where it is found or symptomatic?

Thank you soooo' much!

[Omaschwannoma]

Hi,

Just read your post and am very sorry to hear of your diagnosis.  Like all of us here we have gone through many emotions in the beginning of our journey down Schwannoma avenue.  I would like to suggest you send away to this organization for their package that will give you much information on what an AN is (almost always benign), the emotions you will probably go through being diagnosed with a brain tumor, the different ways they can be treated, and most importantly the type of doctor/doctors you should be talking with as they need to be specific in the acoustic neuroma field as this is a serious issue in treating them.  I won't get into too much detail as I know others will be responding to your post telling you about the choices you have with the size tumor, symptoms and the form of treatment you should investigate.  Don't be scared as we are here to "support" you before, during and after your AN.  Remember also this tumor is slow growing and probably has been there for years.  You have time and welcome.

[tony]

Sorry for your troubles
London is a great place - I`ve lived there 2 yrs or more BUT
If you are in Canada - surely there are places more local ?
even stateside has to be easier than across-the-pond ?
In terms of medical opinions - many places
including House Ear etc will look at MRI images off the net
- you dont always even have to visit
Just get an electronic copy of the MRI scans
- and let the fingers do the walking...
Just a thought
Best Regards
Tony

[Shrnwldr]

First --  Welcome, unfortunately to this board.  There is a wealth of experience, love, nuturing and support on here.  Second -- take a very deep breath.  Third -- I agree you have options here on this side of the water.  Send off an electronic/ DVD of your MRI results to House Ear located in Los Angeles, CA.  There are I am sure many hospitals and such in Canada and in the United States. 

Good luck.  Please let us know how things are going. 

[Denisex2boys]

Hi there .... I should explain that I meant London, Ontario Canada - - there are 3 hospitals in Ontario that specialize in this type of skull base tumors and they are London, Toronto and Ottawa.

Thank you for the replies so far ........

[krbonner]

Hi, Denise!

I can so relate to how you're feeling.  I was diagnosed when my 2 boys were 3 yrs and 4 months, and had surgery about 18 months later.  It was terrifying!!

Your AN is small enough that you do have time to find out all your options.  And it's small enough that I'd thoroughly research the radiation options as well as surgical.  You may find that you still end up with surgery (or not), but it's good to do all the research about the pros and cons of all three methods of treatment (including watch-and-wait) so you know you're making a good decision for you in your particular circumstances.  Try to not feel pressured into making quick decisions - there's rarely need for that.

No matter what you decide to do, we will be here to support you.  I think the key is to find a doctor experienced in treating ANs (someone who has treated hundreds).  They are rare enough that most doctors don't keep up with the latest research and treatment options.

Personally, I'm now almost 11 months post-op with no lasting after effects.  I was taking care of my 2 sons by myself at 6 weeks post-op, and felt pretty much back to normal by 3 months.  While no one can guarantee a complication-free treatment, neither can you assume that you will have problems post-treatment.  All you can do is make the best decision you can given the information you can get.

Good luck!
Katie

[tdworkin]

Hi.
My name is Terry.
I am just starting this AN journey, too- Saw my ENT for the buzzing and the fact that I couldn't hear the crickets with my left ear. He sent me for the MRI (fortunuately, we don't have the wait you Canadians experience. That's sinful.) He called me the same day (June 18) and told me the news (he called it a vestibular schwannoma of about 2 cm which he called medium sized) and sent me, with his office calling first to "expedite" the wait, to a Univ. of Penn doctor. Three weeks later, he said the same thing- AN, medium size; Gamma Knife or surgery; now, go see the U of P neurosurgeon. So, that's my next stop on the U of P route, but no appointment available until 8/28. Waiting is a BIG PAIN. I'm nervous, overwhelmed, scared.... probably just like you are feeling.

My husband found the ANA for me and I have been reading up a storm. I ordered their info and we both read every word. (Ask for that- it comes for free in just a few days. It answers LOTS of your questions.) I am also reading a lot in the AN community- some is even scarier, some is quite funny. That can get to me, so I have to not read so much sometimes.
Everyone at ANA is there to help- the best advice is research-read-ask questions- be in charge of what is done for you.

I decided not to wait for the U of P before seeking a second opinion and made another appointment at Jefferson in Phila. That's where I will be seeing a pair of drs- a neurosurgeon and the radio-oncologist on 8/30. I already like Jefferson's style and am wondering if I should just cancel the U of P guy. But then I realize, more info is better.

Everyone at ANA has said the same thing- keep going until you feel in your gut that this dr/hosp is the best for you.

I know what you are going through. I've already cried and cried. This is heavy stuff- a freaking BRAIN TUMOR!! But at least now, all the symptoms I have been having and things that have been going on (like my silly two step balance routine) MAKE SENSE! Thank goodness for now KNOWING what it is so I (you) can deal with it and preserve whatever hearing is left and stop any other problems it would eventually cause.

I wanted you to know what another "newbie" is is going through. If it's true that misery loves company, then fine- welcome aboard. But I prefer that this ship also be full of helpers and hope. This AN stuff  apparently is more common than we knew. But all in all, it does STINK but we will get through it. You will, too, I am sure. Support is out there.
Feel free to write back and do take care.
Terry

[Jim Scott]

Hi, Denise:

I'm sorry that you have a reason to visit this site and forum, but happy that you did as I believe the 'community' can be of some help to you.  I won't bother reiterating most of the previous comments but I'll mention that even in the Land of Socialized Medicine (Canada) you should seek out  more than one opinion on the best treatment of your AN tumor.  At the size you gave, (1.5 - 2 cm) radiation seems a distinct possibility and while hardly 'foolproof', poses less risk for 'complications' than microsurgery.  I would advise you to make it crystal clear to any surgeon you consult that avoiding facial nerve damage is of paramount importance to you.  I would expect that a caring physician will respect that fear - which is valid - and do what he can to avoid such damage.  Well, it worked for me. 

Unfortunately, the AN 'journey' you're about to embark on is a minefield.  Some of us get through it in pretty good shape (I did) and others do not fare as well, for a variety of reasons.  On having a 'good outcome' to your treatment, be it surgical, radiation or meditation (just kidding on the last one) I strongly believe that having a very experienced neurosurgeon/radiation oncologist/etc is of critical importance, along with relatively good health 'going in' and of course, a positive, determined attitude, which can't heal anything by itself but certainly can make healing, and sometimes acceptance, a lot easier. 

That said, I wish you all the best and hope you'll draw on this forum and it's membership for further support in the near future, as your journey unfolds. 

By the way, doctors know your AN is benign because over 99% are.  If it had metastasized, that would also show on the MRI. 

Jim
 

[tatianne]

welcome, sorry you have to be here but you have come to the right place for the best possible information.
Im a fellow canadian but im in Montreal Quebec. Options are a little limited here, i agree but if for any reason you have one little doubt about what your being suggested, please push to find another source or opinion...
My AN is under observation for the momment but Im strongly leaning towards radiation, GK...Ive seen many of my fellow ANers choode this method of treatment and on a large they have come out without too many side affects and are doing for the most part very well.
This is a personal choice for all and I realize that its best we choose what feels right for each of us. Please research all your options, inform, ask, learn...
even docotrs can be biased and sometimes not cover all their bases.
I have three kids and Im a sinlgr mom, so I can definitly relate to all of your feelings and concerns.
Please PM me if you ever want to talk.
Tatianne

[OTO]

Denisex2boys,
Sorry to hear about your AN.    Once the doctors interpret the MRI and see the spot, they know from the location that this tumor is typically an AN, and they know from history that ANs are typically benign.   Typically ANs are slow growing (my doctor said approx 2mm per year).   If you have surgery, they will send a sample to the pathology department to conform that it is benign.    Take your time to study your options and make the decision that is best for you....       

[Yvette]

Hi Denise, hang in there, we've all made it through, and you will too. I had a 3cm AN and had my surgery done at the Mayo Clinic in MN. My docs said that with the translab style procedure, they could protect my facial nerves much, much better. With translab they said they could see where everything was, and avoid my facial nerves. Be sure the doc you choose has done 400-500 AN surgeries. I understand that they aren't experts until these higher numbers are reached. But know all your options, and keep us posted-we care about you! Yvette

[comfortzone]

Hi Denise,

I am in Vancouver, Canada and have found a great specialist at Vancouver General/UBC that I have a lot of confidence in. I have heard amazing things about Sunnybrook Helth Sciences Centre in Toronto. At first I was not happy with the way I was being treated and did lots of research to find someone that I was comfortable with as this is a delicate situation. I encourage you to do the same.

You will get over the initial shock and I have to admit there are good days and bad days but try and take good care of yourself and know that there are others out there who undertsand!

Corinne

[Raydean]

I'm unsure if this is outdated info since it's was posted a few years back  but if the contacts number are correct then it might lead to more info for your area and health system and AN contacts in your area.


Hugs
Raydean

ANA Canada

http://www.anac.ca

Booklet available: "Acoustic Neuroma: Stereotactic Radiosurgery and Fractionated Stereotactic Radiotherapy" (20 pp). Contact the national office at 800/561-2622 or 780/428-3384 or Irma Arnold at 705/429-6704. Canada does not yet have a Gamma Knife center, and Canadians having such treatment in the USA risk not having insurance coverage approved.

Canada is expecting its first Gamma Knife machine at the Health Sciences Centre in Winnipeg, MB in the fall of 2003. Cancer centers in Toronto (Princess Margaret Hospital) and Ottawa have introduced Linac FSR treatment.

Email: anac@compusmart.ab.ca

Information provided March 2003 by:
Cheryl Bauer
ANAC - National Coordinator
Ph: 1-800-561-2622 /(780) 428-3384
Fax: (780) 438-4837
Email: anac@compusmart.ab.ca

[Obita]

Hello there Denisex2boys:

We all know very well what a shocking diagnosis this is.  Please believe all of us, you will settle down once a little time has past and you have become educated in everything AN.  If you are going to get a tumor in your head, this is the one to get!! 

Good luck to you, Kathy

[4cm in Pacific Northwest]

Denisex2boys,


I am a fellow Canadian (now in the US) who has spent hours researching since my recent diagnoses. Let me share some of my findings - so you do not have to re-invent the wheel.

I was diagnosed with a 4cm on May 31, 2007. I have done solid full time (overtime) research on what is my best treatment option and have consulted with world class surgeons in both the USA and Canada. I even have had the pleasure to meet Dr. Derald Brackmann, in person, at the House clinic in LA. (This man, now age 70, was a pioneer in AN’s and has helped many patients and taught many students in his day. He has a presence of ‘genius’ I cannot explain.)

I am a Canadian, close to your age, residing in the USA (two kids too). I actually made several copies of my MRI cd and sent these to Otolaryngology department chairs at various universities for their outside (of the commercialized American healthcare system) objective onions- up in Canada. (Being that I am a Canadian citizen) Through my research I came to realize there are some very top notch world class surgeons, well versed on AN, up there in Canada and they are also practicing the state-of-the-art new procedures… that are available here in the USA. The difference is the “waiting list� issue up there… however it appears you have an advocate, your ENT, on your behalf if you managed to get an MRI within a month. (Keep a good rapport with this ENT – it sounds like you have a good one who can ‘work the system’! You are fortunate to have a good one… I know of others still waiting months for a MRI)

The Canadian equivalent to Dr. Brackmann (The USA guru of AN) is actually right there in Ontario - where you reside.

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

I am assuming that when you indicated you are heading to London Ont. -your are heading to University of Western Ontario Medical School – where they too produce some top graduates (one of whom is here in the USA now - and will be assisting in my own surgery)

Know that at 2cm- you still have many options (unlike me- who did not receive diagnoses, here in the USA, until it was 4cm)

I understand that you are still in a state-of-shock (as I was two months ago). My panic and stress started to dissipate the more I learned about AN and started to comprehend treatment options. By getting onto this AN forum- you are already a step in the right direction. Trying to do research and learn- was no doubt challenging with my two kids wanting my attention (summer break etc)… I understand your anxiety (as do others). Try your best to build you support network, of friends and family, that can care for the kids - while you take time to understand and read about acoustic neuroma. (You will also need this support -later when you choose treatment …and are in recovery at home)

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 American 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. (I cannot believe ALL the helpful replies I have received on my inbox- thanks AN PT’ers). 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?)

You will exhaust yourself trying to understand how and why this happened to you. (Many of us have “been there and done that� exhaustive thought pattern…) The causes of AN are still unknown…

“Keep moving forward� … and know that you are not in this alone.

4CM in the PNW