Newly diagnosed...Canadian feeling scared....

[Susang8]

Good morning...I am a 57 year old woman, otherwise completely healthy, and was recently diagnosed with a 2.5cm AN on my left side. The trigger was hearing loss in my left ear which I mentioned to my GP at my annual physical.  She immediately got me in to see an ENT in Toronto who gave me a hearing test and sent me for an MRI which I was able to get done within 2 weeks of seeing the ENT.  When the results came in a week later, I got calls from both my GP and my ENT, saw my ENT the next day and he gave me the news.  He referred me to an AN specialist at Sunnybrook Hospital and that appointment is tomorrow.  I have lost all hearing in my left ear and have tinnitus which doesn't bother me at all but other than that have no symptoms. 

My ENT explained the treatment options - watch and wait, GK radiation or surgery.  The thought of the surgery only scares me from the perspective of damage to my facial nerve - I have already lost my hearing so that can't get any worse.

What are the side effects of the GK treatment?

Is damage to my facial nerve a foregone conclusion for both the GK radiation and surgery?

Thanks for having this site and for letting this Canadian intrude....

Susan

[LakeErie]

No, facial nerve damage is not a foregone conclusion. At UPMC ( Univ of Pittsburgh Medical Center ) facial palsy as a complication of GK treatment is 1%. Surgical approaches attempt to spare facial nerve damage by sometimes leaving tumor behind. Each surgeon can give you an estimate of your risk. But is is safe to say that most treatments spare the facial nerve, but there are no guarantees. Good luck

[MG]

Hi Suesang8,
Sorry that you have joined our club. I am a 64 year old woman who was diagnosed with almost a cenimeter AN on left side last August. I have been on W&W and did pretty good until recently. I am starting to get dizzy again and have more pain in my face lately. I fear it may have grown some but will get my MRI in July to see if it has. Since yours is already 2.5, you may want to start looking into radiation or surgery. I am very nervous about the facial nerve myself so I know how you feel. I wish you the best in whatever you decide. Hang in there and keep asking questions. You can learn a lot from the forum so keep posting your questions and you will get some answers.

MG

[Mickey]

Attn. all AN patients over55 especially....  Please check out the Wait + Watch Brigade section of posts here. This is a very viable treatment and way to feel better overall.  I`ve been going on 7+ years now and am doing fine. Stay Proactive!  It`s sort of like "macrobiotics" for AN conditions.... Best Wishes, Mickey

[Echo]

I was 57 when I was diagnosed with my 1.8cm AN.  Nine months later it had grown to 2.4cm.  Gamma Knife was the next stop for me!

While Wait + Watch is a very viable option, do not assume that just because you are over 55 AN's grow slowly or not at all.  Mickey is absolutely correct in suggesting one stay PROACTIVE!  AN's can grow without your symptoms changing or your symptoms can change without the AN growing - these are tricky aliens to monitor and regular MRI's are truly the best way to know what's going on.

My personal opinion (for what it's worth) is that Wait + Watch is best for small AN's.  When AN's start reaching 2.5 cm or larger they are no longer considered small. The larger the AN the greater the risk for problems.

Cathie.

[Kathleen_Mc]

Susan: Who is the doc. you are seeing @ Sunnybrook? I had my regrowth removed there, had excellent care. I am sure the doc. will present you with all possible options (W&W, gamma knife, surgery) and discuss the pro's and con's of each (gamma knife is done at Toronto Western and if that is possible and your choice they will refer you to someone there). Be sure to read about these options if you get a chance before you go and take a list of WRITTEN questions so you don't forget to ask. Let us know how it goes.
Kathleen

[ampeep]

Some folks have no side effectsfrom GK while others (like me got a whole slew of them).  It depends on the person.  Suggest looking through the forums to educate yourself - I learned more from this site than from my doctors.

One thing about general anaesthesia - my former girlfriend was a pharmacist & she would never go under unless absolutely necessary.

Keith

[Susang8]

Thanks so much for all of the replies...I really appreciate all of your insights.  I saw Dr Vincent Lin at Sunnybrook in Toronto last week.  He suggested watch and wait for 6 months with a repeat MRI in November but he is leaning toward surgery.  He did say that to avoid facial nerve damage they will leave some tumour behind. I am seeing my ENT for further referrals to get a 2nd opinion (and maybe a 3rd!) as with the size of my AN (2.8cm x 2.7cm), watch and wait scares me.  I am hoping to get referrals to Dr Schwartz at Sunnybrook, Dr Cusumano at St Michaels, and Dr Laperierre at the GK centre at Toronto Western.  I have no symptoms other than the SSD so other than the size of it, am not feeling pressure to do anything - but the size of it worries me and am hoping that a 2nd and 3rd opinion will help make my treatment decision easier to make.  Thanks again everyone, I will post my progress. 

Susan

[keithmac]

Some folks have no side effectsfrom GK while others (like me got a whole slew of them).  It depends on the person.  Suggest looking through the forums to educate yourself - I learned more from this site than from my doctors.

One thing about general anaesthesia - my former girlfriend was a pharmacist & she would never go under unless absolutely necessary.

Keith

Anyone with access to 'Scientific American' and concerned aboutn anesthesia may be interested in the article 'Hidden dangers of Going Under' - "Anesthesia may have lingering side effects on the brain, even years after an operation", April 2014.

[opp2]

Thanks so much for all of the replies...I really appreciate all of your insights.  I saw Dr Vincent Lin at Sunnybrook in Toronto last week.  He suggested watch and wait for 6 months with a repeat MRI in November but he is leaning toward surgery.  He did say that to avoid facial nerve damage they will leave some tumour behind. I am seeing my ENT for further referrals to get a 2nd opinion (and maybe a 3rd!) as with the size of my AN (2.8cm x 2.7cm), watch and wait scares me.  I am hoping to get referrals to Dr Schwartz at Sunnybrook, Dr Cusumano at St Michaels, and Dr Laperierre at the GK centre at Toronto Western.  I have no symptoms other than the SSD so other than the size of it, am not feeling pressure to do anything - but the size of it worries me and am hoping that a 2nd and 3rd opinion will help make my treatment decision easier to make.  Thanks again everyone, I will post my progress. 

Susan

Hi Susan, sorry to welcome you to the AN club. I am coming up on my 4th Anniversary of my tumour removal. I haven't been on the site for about 6 months I'm afraid so I'm not sure who all the GTA players are. I take it you are from the GTA because you have posted about all the local hospitals in T.O. I too had referrals to Dr. Schwartz, Dr. Guha (since passed away) and Dr Chen. I opted for a different surgeon but I believe the situation in Toronto has improved a great deal in the 5 years since I was diagnosed. All the best in what ever choice you make. Have you been to a ANAC support group meeting yet? They happen every second month at a place on Spadina in the city. I'm afraid I haven't made it to a meeting in a long time either, but you know what? That should help you to know that you can have a normal busy life before/during and after AN.

All the best.

Nikki

[Susang8]

Thanks so much Nikki...I am from Milton ( just west of Toronto) but because I worked in downtown Toronto, my GP was there and referred me to an ENT on Eglinton W who in turn referred me to Dr Lin at Sunnybrook.  Although I am pretty terrified, I am leaning toward surgery but am hoping to get a 2nd opinion as to the timing - asap? Or wait for my next MRI currently scheduled for November?  I also have a referral to see Dr Laperierre ( a GK specialist) to explore that option before I rule it out entirely.  I was just diagnosed in mid-May, and so haven't had a chance to attend a ANAC meeting in Toronto yet but have been in touch with the site moderators.  Thanks so much for your response and for your insight - I really appreciate it.     

Susan

[mesafinn]

Hi Susan,

I'm sorry I haven't noticed your posting sooner.   I've seen many of the doctors you have mentioned, and I'm happy to process with you if you want to PM and/or call.    I'm in Niagara but work in Toronto, too.

Hope you're doing okay.

P.

[Ninabea]

I'm also a newly diagnosed Canadian feeling a bit uncertain.... I am 52 was diagnosed in November of last year (tinnitus and hearing loss in one ear), and the second MRI showed that the AN, while small, had grown. My specialist in London, Ont. (Dr. Sumit Agrawal) was in the process of recommending surgery when I mentioned that I had experienced a single facial spasm -- he concluded the AN might be on my facial nerve, so he's worried that if they operate I'll have significant facial nerve damage. Soooo... I'm off this week to the Gamma Knife clinic at Toronto Western for a consult.

[Susang8]

Hi Manina...I'm so sorry for your diagnosis.  I was just diagnosed with my AN in mid-May.  With respect to your GK referral, I just had a consult with Dr Payne at the GK Clinic at Toronto Western last week.  I was supposed to see Dr Laperierre but got Dr Payne instead.  I was told that they function as a team and make decisions regarding patient treatment as a team so they felt it didn't matter which Dr I saw. Dr Payne was very nice and was very detailed in his explanation and was very reassuring that I could consider GK treatment despite the size of my AN.   Hopefully your consult there will go just as well. I also have a consult with Dr John Rutka (a neurosurgeon with a lot of experience with AN surgeries) on Monday as I am leaning toward surgery but wanted a 2nd opinion before making a final decision.  My 1st consult with a neurosurgeon was with Dr Vincent Lin at Sunnybrook Health Science Centre in Toronto where they do a lot of AN surgeries.  I really felt comfortable with Dr Lin but was advised by a number of people on this site to get a 2nd opinion so I would urge you to do the same. 

As another newly diagnosed AN, I would be happy to keep in touch so feel free to message me directly.

Take care...

Susan

[mesafinn]

In London, Ontario, Dr. Lorne Parnes is an award-winning otologist who has a great reputation.  Another Canadian surgeon is in British Columbia but OHIP will cover him is Dr. Ryojo Akagami.   They both have treated several ANs with terrific success.   I'm also a fan of Dr. Cusimano at St. Mike's in Toronto (he gives the most balanced approach, in my opinion, between W & W; GK; and surgery).

Given the nature of the surgery, I strongly recommend a second--and even third--opinion.  It gets complicated and overwhelming dealing with so many appointments, doctors, and input, but an informed decision is most always the best one, particularly when dealing with your brain.

Wishing you nothing but the best!

Patrick, a fellow Canadian