Author Topic: Newly diagnosed in Ontario, Canada  (Read 10030 times)

Farmgirl88

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Newly diagnosed in Ontario, Canada
« on: March 19, 2011, 10:29:22 am »
Hi folks,

Here I am, another newly diagnosed AN patient, overwhelmed with information and feelings.  I was diagnosed March 1, 2011 with an AN measuring 7mm x 6mm x 4mm (right side).  I have had one-sided tinnitus for about 3 years, and finally mentioned it to my GP this year.  She sent me for a hearing test, which to my shock showed I have some hearing loss (they haven't given me a specific number), and after that I went for an MRI which discovered the tumour.  So far I have no other issues, just the hearing loss and extremely annoying tinnitus which is there 24/7. 

I am 48 years old, and sure wasn't expecting anything like this to come from going for a check-up!  I am in good health, otherwise.  Right now I am waiting for a referral to a neurosurgeon at Sunnybrook in Toronto.  I still haven't heard anything about this appointment--do these normally take a while to get?  I did contact the AN Association of Canada, but their message board is not working right now, so I hope you don't mind me posting on yours.  They did give me a list of some members in Toronto, and I have talked with a couple, whose support has been very helpful right now.

I am trying to wade through the mountain of information that's out there.  (My GP said they do not do radiation--maybe she needs to read up on this!  I am the 2nd patient she's ever had with an AN.)  Surgery sounds scary, but then I am in great health right now, and think about what happens if I wait for it to get bigger, then I'm older and it's harder on me then?  I have been reading about the Gamma Knife treatment, which sounds like it might be a good option, too.  I am not really thrilled with the idea of waiting for this thing to grow and give me more problems before we act on it.  I would really like to save the hearing I still have, if possible.  It's so hard, the unknown.

I have a wonderful husband and three young adult kids.  Two of them don't even know about this yet, as they're away at school and I don't want to upset their studies.

Lori
Central Ontario
AN diagnosed 3/2011, 7 mm x 6 mm x 4 mm, right side
Some hearing loss, have tinnitus 24/7
Watch & wait

CHD63

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Re: Newly diagnosed in Ontario, Canada
« Reply #1 on: March 19, 2011, 11:36:16 am »
Hi Lori and welcome to this forum .....

We have many Canadians who are active here so you are certainly among friends!

Although the diagnosis of an acoustic neuroma is terrifying, remember ANs are almost always benign and slow-growing so you have plenty of time to do your research.

A 7 mm AN is well within the range for having all three options, watch and wait, radiation treatment, or surgical removal.  The important thing is to find doctors who have treated many, many acoustic neuromas, not just a few.  This is one time when experience and skill do really count for a successful result.  You are right that you probably want to seek treatment while you are still healthy and with relatively few symptoms, but you should not feel rushed (or pushed) into making a quick decision.

If the research gets overwhelming, back off and just let it simmer for awhile.  If your symptoms begin to change is the point at which you will need to be more active in seeking treatment.

Best thoughts.  Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Jim Scott

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Re: Newly diagnosed in Ontario, Canada
« Reply #2 on: March 19, 2011, 12:49:10 pm »
Welcome, Lori ~

I'm sorry you're the recipient of an acoustic neuroma diagnosis but glad that you discovered this website forum.  As Clarice stated, we have many Canadian members/posters so you're welcome here.  Your AN is definitely within the range for Gamma Knife (radiation) and, unless a doctor says otherwise, that is certainly a viable option.  Your GP sounds uninformed about acoustic neuromas but that is not uncommon.  I'm not familiar with the medical bureaucracy operations in Canada but you do need to seek out a physician/specialist that has extensive experience with treating acoustic neuromas.  That can be more difficult than it seems, but it is vital to stacking the odds for a good outcome.  Observation ('watch-and-wait') may be the initial approach a doctor may suggest, based on the relatively small size of the tumor.  However, it will eventually have to be addressed and your eagerness to do so is, in my opinion, the right attitude to take, especially with your desire to save what remains of your hearing ability.  Please stay in touch via these forums and update us when you've had your neurosurgical consultation.  Thanks.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

yardtick

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Re: Newly diagnosed in Ontario, Canada
« Reply #3 on: March 19, 2011, 03:54:47 pm »
Hi Lori,

I too am a Canadian from Ontario.  I live in Hamilton (Stoney Creek) and I see a Dr at The Toronto General.  It took me 5 weeks to get in to see him.  I was seeing someone in Hamilton and had surgery in Hamilton but I did not care for his doctoring, a very long story. 

Your tumour is relatively small and your symptoms minimal, so you are a good candidate for watch and wait. The doctor might prescribe imovane or ativan to help with the tinnitus.  Radiation is available if that is the treatment you choose.  As Jim stated your family doctor is uniformed.  My family doctor always tells me that he isn't the expert, and I probably know more about this than he does.  I have to agree with him on that, thanks to this forum. 

Explore your options and if you feel you need a second opinion, go for it.

Anne Marie 
   
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

mk

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Re: Newly diagnosed in Ontario, Canada
« Reply #4 on: March 19, 2011, 06:58:05 pm »
Hi Lori and welcome from another Ontarian.

Sorry for your diagnosis, but at least your AN is small, giving you plenty of time to research all your options.
You are in the right place in this forum, there is a lot of collective experience here.

Generally in Canada doctors favor conservative management (i.e. watch and wait) for small ANs. They will most likely suggest that you get another MRI in 6 months to establish if it is growing, before you do anything.

Don't be afraid to ask for referrals - there is no bureaucracy involved (you just show your health card), but there is an issue with wait times, as they will tend to prioritize patients who are at more risk.
The Sunnybrook team where you have been referred is probably the most experienced in Ontario so you are in good hands. I was told that they do at least 2 AN surgeries per month. If you are interested in the radiation option you should also ask for a referral to the GK centre at Toronto Western. Be careful though with them, their opinions may vary widely depending on who you consult with (they rotate, so different doctors may be present at different weeks). I can give you a lot of insider information on the centre and who to ask specifically to see, if you want to PM me.
There is also a new CK (Cyberknife) centre in Ottawa. We have heard may good things on this board about the doctor running it. One forumite recently had treatment there.
Feel free to ask any questions you have - personally I have consulted with all the major teams that are experienced in ANs and there are many other Ontarians here.

Take care,
Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

jaylogs

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Re: Newly diagnosed in Ontario, Canada
« Reply #5 on: March 19, 2011, 08:00:42 pm »
Hello Lori and welcome to our club!! I am sorry you had to find this, but you'll be glad you did! Everyone before me has given great information, but I wanted to say hello. Please feel free to ask questions, there are no dumb questions on here!  This is also a great place to vent, on ANYTHING...keep us updated on how things go! Good luck! :)
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Keeping Up

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Re: Newly diagnosed in Ontario, Canada
« Reply #6 on: March 20, 2011, 10:09:16 pm »
Hello Farmgirl88

I was a Toronto girl until a few months ago.  You will see from my siggie that I am also the proud owner of a very small AN (actually, marginally larger than yours ... but then, around here, one could just say that is simply the difference in the MRI machine!)

I was diagnosed just over two years ago - I would have been 36 years old (I think, maybe 37 years old).  I hadn't even noticed my tinnitus (but it must have been there) but had a routine hearing test as part of a work medical package.  My hearing loss is very minor - at the time about 30db PTA (pure tone average) with good word recognition.  Regardless, unilateral hearing loss is a bit of a flag (not a definitive one mind you) for an acoustic neuroma.  I was referred to Dr. Rutka at Toronto General (Yardtick, aka Anne Marie also goes to Rutka).  

Like MK (Marianna) indicated, Canadian doctors favor conservative management (watch & wait) - Dr. Rutka has written numerous papers (published in good medical journals!) on the topic.  I have a copy of his 10 year study follow up on W&W if you are interested (PM me please if you are interested).  According to his study, something like 67% of small AN tumors don't show any noticeable growth in 10 years and most who will fail conservative management, will fail within three years. [I am three years this year, fingers crossed for no growth at my July MRI.]  Follow up is key, hearing loss is definite but potential no worse than having any treatment (GK or surgery).

I am W&W.  I am young-ish (now, turning 40 later this year), mother of four very very very active children (oldest is 8 years old), I work full time, and heck just quit a good job in Toronto and moved everyone to Calgary for a new opportunity.  This tumor doesn't slow me down - I am lucky as some people on these forums are severely impacted by symptoms, post-treatment issues and fast growing tumors.  I do stagger at times, and my hearing is weak in noisy situations (did I say I had four children - this house isn't quiet and I misunderstand my husband a lot.  I get creative with my interpretation because 'whaaaat'? gets boring fast.)

I acknowledge I will lose my hearing (regardless of the choice of treatment), I may need treatment this year, next year, five years, ten years or maybe twenty years down the road.  I can't guess.  I know I won't die from this tumor.  I am diligent about my care, I know my options, and always make sure I go to my appointments as they are dictated by my doctors.  I can't do much more than that - so I don't worry too much about it.

I should also say that I am tremendously upbeat, find humor in almost everything and a bit energetic so alas, you get the positivity of my mood tonight.

Do your research, I would suggest asking your GP for an ENT referral who can manage your case (and offer you conservative management supervision should you chose that route - I wouldn't want to be with a GP if I was going for the long haul.  I would highly recommend Dr. Rutka - ANs are one of his specialities.  If you aren't close to Toronto, we also have an Ottawa person ... Tenai(???) who will have some suggestions for ENTs)  The Gamma Knife centre in Toronto can offer you management care if you want to go the GK route.  I HIGHLY doubt neurosurgeons will offer any type of long term care - it isn't their strength. Also, don't expect any warm fuzzy supportive comments from neurosurgeons or the GK centre - a few of us can say how discouraging the appointments were from some of our referrals.  

Tell your kids - my kids know I am losing my hearing and can't hear well in noisy environments.  I told them something is growing in my ear/head and I won't die from it.  (I think my eight year old knows I have tumor - but again, not a big deal to me, not a big deal to her.)  Obviously,  your kids are older so are even better able to manage the truth - a benign cranial based tumor (you don't necessarily have to refer to it as a brain tumor - mine isn't a 'brain' tumor due to its location - however, everyone is a bit different!)  

Good luck, stick around - a very supportive group.  People can have very similar tumor sizes but will chose very different treatments.  Everyone is different and luckily for most of us here with small tumors, the choice is typically our own - no wrong answers.

Ann
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

opp2

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Re: Newly diagnosed in Ontario, Canada
« Reply #7 on: March 21, 2011, 07:20:11 am »
Welcome aboard. I am so sorry to hear you have an AN but I am also happy to hear you got a diagnosis. Often many are misdiagnosed. I was originally diagnosed with migraine. I am from Brampton. I had surgery in Vancouver, but consulted at Sunnybrook, Trillium in Mississauga, Toronto Western, House and Vancouver (VGH). There are no clear 'right' answers when it comes to AN, more there are 'best fit for you' scenarios.

Feel free to contact any of us. We are all willing to help and support you through your AN journey. You have time. Deep breaths are a staple.

Best wishes,
Nikki
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

Vivian B.

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Re: Newly diagnosed in Ontario, Canada
« Reply #8 on: March 22, 2011, 05:30:45 pm »
Hi Lori,

Welcome to the forum. I am from Toronto as well. I was diagnosed in March 2009. I saw Dr. Nedzelski at Sunnybrook but I understand that he is now semi retired. He referred me to Toronto Western where I had GK in June 2010. So far I am O.K. with slight discomforts which I had as well prior to being diagnosed. I have two young adult children also. I am also 48. My daughter actually helped me find this forum. They will understand when you explain to them what it is. It does sound worse than it is but it's actually not that bad. This is coming from someone that was totally freaked out when diagnosed. If you have any questions, do not hesitate to ask. By the way, the wait time to see the surgeon could be about 8 weeks. I would ask to go on the cancellation list. Take care.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Farmgirl88

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Re: Newly diagnosed in Ontario, Canada
« Reply #9 on: March 23, 2011, 06:36:21 am »
Thank you, everyone, for taking the time to reply...it's so good to communicate with others who are on the same journey. 

Yesterday I got mail from Sunnybrook saying I have an appointment with Dr. Chen on April 27!  That's faster than I thought!  I will be having an audiogram first, before I see him.  That's good, because I have only had one, and I still don't believe its results (does that sound like classic denial to you?).  I am starting to see the same names of doctors being mentioned by folks here, and also from the other contacts I have had.  Rutka's name comes up a lot!  I would like to explore the GK option.  Some people are totally against radiation, but I am open to it.

There is an ENT specialist in Orillia that I will be seeing if we decide to go the watch & wait route.  I'll have this appointment later in April, then we'll see how that goes and go from there.  Thanks for the offers of info about other doctors, etc. 

I am planning to tell my other two kids when school is finished next month at Easter.  I am currently experiencing some interesting word recognition problems--we've had some good laughs about my misinterpretation of some things people say.  I am trying to remain positive about this whole thing, and it has definitely been a wake-up call for my husband and me, about just what is important in life.

When the information gets too overwhelming, I am lucky we have the farm here to keep us busy (as well as my day job off the farm).  It's maple syrup season right now, so I spent the weekend helping boil sap.  It's great therapy!

Lori
AN diagnosed 3/2011, 7 mm x 6 mm x 4 mm, right side
Some hearing loss, have tinnitus 24/7
Watch & wait

chrisransom

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Re: Newly diagnosed in Ontario, Canada
« Reply #10 on: March 28, 2011, 08:56:52 pm »
Lori,

Welcome to the AN club!  I've read all the answers to you post and there's not much more that I can add.  Learn as much as you can - that's what helped me the most so far.  I am a watcher and waited based on that otherwise I'd probably be recovering from some procedure right now.  I'll do that when the time is right.

I agree - sugaring time is great therapy! 

Take care,

Chris

Diagnosed with 21x16x16 mm AN in December 2010.  No change in June 2011 nor in January 2012.  No major symptoms - tinnitus, some fullness in left ear but no hearing loss or other symptoms.
Firmly in the W&W camp for now.

Suu

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Re: Newly diagnosed in Ontario, Canada
« Reply #11 on: March 29, 2011, 04:02:36 am »
Thanks for the update Lori.

Boiling sap? I never gave a thought to how one gets maple syrup but it's as good a therapy as I've ever heard of.
(Some of the saps I've met could do with boiling!  ;D)

Keep us up to date if you can please?  Good luck and best wishes to you and your family.

Hugs,
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

Farmgirl88

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Re: Newly diagnosed in Ontario, Canada
« Reply #12 on: April 27, 2011, 05:14:15 pm »
Hi,

Went for my appointment with Dr. Chen today at Sunnybrook in Toronto.  I had another hearing test, and it was pretty much the same as the one I had 3 months ago: moderate hearing loss at high frequencies in the right ear, with good word recognition.  (although I know there were a number of words I could not make out  ???)

Dr. Chen showed us (my husband and I) the MRI and said it's small, and he couldn't operate on it without sacrificing my hearing, due to its location.  He is recommending watch & wait until it demonstrates growth.  He did say this is something I (we) will have to get used to and accomodate (eg. my word mixups) but for now, since I don't have other symptoms like balance problems, it should just be monitored.  He did talk about the tinnitus problem, and discussed tinnitus maskers and possibly a hearing aid to help.

He is not a fan of radiation; my age (48) and unknown long-term effects of radiation 20 or so years down the road make him uneasy about that treatment.

So, I guess I'm a watch & waiter now, until this tumour decides to grow.  I do feel a little frustrated with that decision, that I don't have much choice.  I guess I'll just have to wait and see if this thing starts growing, or my hearing gets a lot worse, before we can investigate the radiation option.  I did want to look into that, though.  I am told that I will continue to lose my hearing, but that's a given, no matter what treatment.

I'm supposed to get on with life, and not think about this, but right now, between the fullness feeling, and the howling tinnitus, there's a constant reminder that there's something in my head that's not supposed to be there.  Maybe time will make this better, that I'm still in "diagnosis acceptance" mode.  I do need to try to not stress, as he did say that contributes to tinnitus, but then working in a quiet library doesn't help, either!  :P

Lori
« Last Edit: May 02, 2011, 07:08:19 am by Farmgirl88 »
AN diagnosed 3/2011, 7 mm x 6 mm x 4 mm, right side
Some hearing loss, have tinnitus 24/7
Watch & wait

opp2

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Re: Newly diagnosed in Ontario, Canada
« Reply #13 on: April 28, 2011, 09:47:36 pm »
Hi Lori,

Take it from someone with 13 years experience. If you don't pay attention to it, you won't hear our tinnitus.  :-)
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

Keeping Up

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Re: Newly diagnosed in Ontario, Canada
« Reply #14 on: April 28, 2011, 10:05:11 pm »
Hi Lori

Got your PM ... and will send the study onwards!

I love maple syrup season.

I would push for a GK consult (in Toronto) so you have another point of view re radition.  While my instinct is to distrust radiation, not sure much evidence exists to suport it (or refute it ... at least over a 30+ year time frame!).  Many of the GK and CK patients on this site are in the 40-50 year old range so not convinced it has traction (the 30 year out theory).  The GK specialist will have a different view.  (I find great peace knowing what I would chose if this tumor shows grow - you may find the same with another consult or two!)

Ann

dx Dec/08 - 5mm x 8mm AN
'watch and wait'

 


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