ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: dragonmama on July 21, 2011, 03:34:13 pm

Title: Finally diagnosed! In Kingston Ontario
Post by: dragonmama on July 21, 2011, 03:34:13 pm
I'm posting here because the Canadian forum seems dead, and it looks like a lot of Canadians are on this board too.

My story involves lots of kicking and screaming at people who have listening trouble - trying to get them to recognize/acknowledge/take action on my hearing loss. I developed tinnitus in my left ear in March 2009 which my GP dismissed with a prescription for antihistamines. When the antihistamines didn't work, I was given... another round of antihistamines. Needless to say, this convinced me that there was some kind of mucus plugging my ear and I kept waiting for it to clear. I couldn't hear properly and had lots of challenges. I cried and coped and cried and coped.

Unfortunately, we moved to a new location in July 2009 (Kingston) and the doctor shortage here is brutal. I was confident that I'd be able to find a new doctor - I've lived in a few cities and never had trouble finding a doctor before. After a year long search I gave up and went through the government referral service. The nurse who spoke with me and "triaged" my need for a doctor and then connected me to a new doctor in town, told me that there literally hadn't been a single doctor accepting patients in town for that whole year. So, one year of ongoing tinnitus with no medical help.

Then, being a new patient, with two young kids (aged 10.5 and 6), the focus of the first few months was on getting the kids' vaccinations up to speed, and monitoring my blood pressure (I have hypertension). I did talk about the tinnitus and the mucus that was supposedly blocking that eustachian tube at every visit, but it wasn't till I had my physical in November and I lost all patience and yelled "I am deaf!" that my doctor listened.

He sent me for an audiogram (waited till February 2011 for that - long wait times despite the fact that this is a city with a well-known medical school and is a regional health centre). When I got the results I flipped. I have only 10% of my hearing in my left ear - not even enough hearing remaining for a hearing aid to work. But the news was worse - I got a copy of the audiogram for my own records and read the scribble at the top "retro-cochlear pathology".  Naturally, I googled that phrase.

So, while my family was emotionally adjusting to the fact that I am permanently assymmetrically deaf, I'm suddenly totally fine with being permanently deaf, because I've just discovered that the only thing fitting that description is an acoustic neuroma - bigger worries on my plate! My GP, of course, referred me to an ENT to confirm that there wasn't another reason for my hearing loss. The problem being the ENT's 8 month long waiting list! I tried calling the ENT's office to get on their cancellation list, and ended up there in person where they told me that the only way to get a quicker appointment was to have my GP refax the referral with the word "URGENT" on it in bold lettering - that way the ENT would actually read the referral and triage my need to see him. Otherwise, all appointments are booked into the next available time slot by administrative staff without any medical direction on what needs to be dealt with quickly.

My GP faxed that second request practically the instant I asked him to. And that moved my appointment up to... April (cut the wait to 2 months). My ENT is a treat and I wouldn't recommend his people skills. The first "examination" appointment was 5 minutes long and ended abruptly with him telling me he was ordering an MRI to "make sure nothing's growing in your head" then racing out the door, ending the appointment. <Thanks for the empathy and in-depth explanation!>

The MRI was done at the end of June, but my ENT waited 3 weeks before seeing me to deliver the news. I'm pretty sure he was seeing other patients ahead of me, stalling until he had the nerve to face me - especially since his clinic opens at 8:30 and I got there 10 minutes early for a 9 am appointment - how far behind could he be that early in the day? He didn't see me until after 10, and then there was no eye contact as he focused intently on the MRI report before telling me I had an acoustic neuroma. He was so visibly relieved that I knew what it was and he didn't have to explain and when I said I wanted a referral to the neurosurgeon who does this kind of surgery the most often, and was willing to travel to Toronto or Ottawa, he was so eager to start that referral that he couldn't wait to get out of the room and away from me. That appointment lasted less than 5 minutes.

I'm pretty sure he's referring me to Dr Chen at Sunnybrook - although he said "these things grow very slowly so there's no need to hurry and it's unlikely you'll hear from him about an appointment before September". Is that true! Because if so... how can they justify leaving me to stew with my own imagination and hoardes of questions all the way from February to September? Seems rather inhumane to me.

My GP is very annoyed with the delays from the ENT and has promised to get a referral for a second opinion that's faster than the one to Dr Chen. I'm going to ask him to get me in to see Dr Rutka.

So that's where I'm at - oh yeah - forgot to mention the whopping inner ear infection I got Christmas Eve. I was so dizzy I couldn't open my eyes for 4 days. (Lovely for my family - stressful, yuckky Christmas all around). Went to emerg, but they told me there was no connection between it and my hearing loss, despite both being in my left ear. I'm pretty sure I lost some or all of the balance info from my left side at that time. I staggered around for two weeks before I managed to establish some control over it.

My AN is 16 x 10 x 8 mm and is close to the facial nerve. I'm thinking they'll want to operate sooner rather than later because of that. I don't think the gamma knife is a good option for me because I think I have a higher than average chance of regrowth - I had a parathyroidectomy in 2002 for a benign parathyroid tumour and I see on the internet that there is some research being done on people who have a tendency to grow benign tumours. Apparently people who've grown one (the parathyroid tumour) are more likely to grow an AN.

I would love to postpone the surgery as long as possible or find some way to minimize the trauma to my family. I haven't had them tested, but I have been told by parents of kids with asperger's that both my daughters behave like they are on the autism-asperger's spectrum. I don't have the money to pay for those tests myself, so I'm looking for a charity to fund getting them done before any surgery, just so I can tell my health care provider about it so they will realize where the over-the-top behaviours and reactions are coming from. And so maybe we can work on a plan that will minimize the trauma for them.

Anybody ever shrunk their tumour? I'm thinking of seeing an acupuncturist to see if he can - just so I can do W&W for a few years and get my daughters' coping skills up to what I think they'll need in order to go through a surgery with me.

Title: Re: Finally diagnosed! In Kingston Ontario
Post by: Kaybo on July 21, 2011, 04:11:23 pm

WOW!!  So sorry that you have had to go thru all of this!  Let's hope that the rest of your time with this is much shorter and that the Dr's are MUCH better!!

K   ;D
Title: Re: Finally diagnosed! In Kingston Ontario
Post by: Jim Scott on July 21, 2011, 04:15:15 pm
Hi, Gael ~

Welcome - and our sympathy for all the hassles you've had to endure struggling with Canada's health care system. You have quite a tale to tell and thank you for sharing your story.  At this juncture I'll manfully resist the urge to make a pithy statement about the vicissitudes and deficits of government-controlled public health care systems and simply extend the hope that you'll have better success within the Canadian system as you continue on your AN journey. 

I'll also venture to comment that, to the best of my knowledge (I'm not a doctor) acupuncture will not be able to affect the growth of the AN but it may possibly be of some help with some of the symptoms.  Other members will have lots more to offer you, I'm sure but I'll leave you with a promise to include you in my prayers and the reminder that we have other Canadian members that may well be able to extend some usable information and advice to you.

Title: Re: Finally diagnosed! In Kingston Ontario
Post by: mk on July 21, 2011, 05:11:42 pm
Hi Gael,

what a surprise, I never thought I would see someone from Kingston here! I am also from Kingston. As you will see I have a rather lengthy story here - and I have learned pretty well how to navigate the system. The Sunnybrook team (Drs. Chen/Pirouzmand) is one of the most experienced ones. Dr. Rutka is a very highly respected neurotologist, although I don't care about the surgeon he works with these days. Your AN is still small, and these things grow very slowly. Because of this I wouldn't be surprised if you had to wait until September - they see patients on an urgency basis. Another very experienced doctor in both surgery and GK is Dr. Cusimano at St. Michaels. You could arrange for your GP to send a referral there too.
When was your last MRI? you should ask to have one scheduled in about 6 months time to get the rate of growth. You can go directly through your GP for the requisition, that's what I always do.
I know all the doctors around and I would be happy to discuss with you in more detail. I will send you a PM.

Title: Re: Finally diagnosed! In Kingston Ontario
Post by: tenai98 on July 21, 2011, 05:24:37 pm
Hi Geal
And welcome to the forum..I am from Ottawa and my ENT is fantastic...Dr. Schramm...Valarie on here also sees him.  My neurosurgeon was Dr. Benoit.   He is great as well...He couldnt remove the entire tumor, so now I"m under Dr. Morgon's watch and if at anytime it grows, I'll be doing cyberknife.  Have you checked into cyberknife?
Jo ;D
Title: Re: Finally diagnosed! In Kingston Ontario
Post by: dragonmama on July 21, 2011, 06:29:25 pm
Wow - people are fast to reply around here!  :D Thanks for the warm welcome.

Marianna, I'll try to talk to you by phone, since you're in my neck of the woods.

Jo - I haven't heard of cyberknife. Can you point me to some links for more info?

Jim - I have many more medical stories.  ;D And I wouldn't be offended if you commented on the perils of having a government run health care system. There are pros and cons in any way of doing things.

I'm an oddity - got rheumatic fever at 16 when it was so rare (due to the use of antibiotics to treat strep throat) that nobody knew what was wrong with me - there was no one who'd personally seen the symptoms before. The day I was admitted to the hospital the doctors were so alarmed and mystified that they told me it was most likely I was about to die. That was 31 years ago... ;)

My parathyroid tumour was discovered by a painstakingly methodical ancient urologist who was treating me for kidney stones. He too, had poor interpersonal skills, but I will love the man till the day I die because he figured out what was wrong with me when my GP had dismissed all my complaints and symptoms for 2 years. Loved my ENT surgeon too - I noticed he was the only surgeon visiting his patients in pre-op - the anesthetists were visiting everyone prior to surgery, but he was the only *surgeon* who came around for a quiet word of reassurance, calmly telling his patients exactly what he was going to do to them.

Title: Re: Finally diagnosed! In Kingston Ontario
Post by: CHD63 on July 21, 2011, 07:18:26 pm
Hi Gael and welcome to this forum .....

It sounds like you have been through a nightmare with seeking answers for your symptoms!  Cannot imagine the frustration you have felt!

Glad Marianna and Jo can give you some tips on meandering through the Canadian Healthcare System.  We have a number of really wonderful Canadians on the forum.

Certainly hope the process can be speeded up and you have some answers soon.

Many thoughts and prayers.

Title: Re: Finally diagnosed! In Kingston Ontario
Post by: opp2 on July 21, 2011, 08:38:17 pm
Hi Gael,

Welcome! Yes the Canadian Forum has really taken the beats since it was revamped. I am from Brampton, and also was seen by 4 or 5 surgeons here in Ontario. There are quite a few of us here who've seen Ontario surgeons. Feel free to email or pm me anytime. Marianna and I have and Jo and I have text a few times. We're here to help.

Title: Re: Finally diagnosed! In Kingston Ontario
Post by: dragonmama on July 26, 2011, 12:07:00 pm
I wanted to post a huge THANK YOU! to Marianna - MK.  :)

Marianna talked to me by phone over the weekend and was a huge help. She gave me really practical advice and now I have a list of things to do and learn about. So much nicer to direct my efforts toward action. Up till now, I've been getting calls from family and friends, all about the emotional side of things, which is more likely to make me stew, rather than do.

Thanks again Marianna!
Title: Re: Finally diagnosed! In Kingston Ontario
Post by: mk on July 26, 2011, 05:16:04 pm
Really, no problem. It is a very small thing compared to all the help  I have received these last 3 years on the forum. I really don't know what  I would have done without all the kind people here (including those who have responded to your thread) and their collective wisdom and experience. I am glad that you found the forum and that you have some leads now.

Title: Re: Finally diagnosed! In Kingston Ontario
Post by: Keeping Up on July 26, 2011, 07:49:44 pm
Hello Gael

Another Canadian - I am somewhat ex-Kingston (I went to Queen's) and ex-Ontario (just moved to Calgary, Alberta).  You have a perfect name for a Kingston girl (the sports teams at Queen's are The Gaels)! 

I also have an AN - but incredibly lucky as it is tremendously small.  Well I hope it is still small - I was due to have a MRI end of this month, but the alberta system is miles behind the ontario system (they have a cancellation list and I lived in toronto so could get almost immediate MRIs in the big city centres) so it took me SEVEN months to schedule a MRI in calgary, nine if I hadn't complained ... of note, I could get one within 24 hours for C$750 (US$800 given the current foreign exchange rate) which I will gladly spend if I start to get concerned.  [I do have to say something positive about the system as they were simply awesome when my 5-year-old son was admitted to Alberta Children as a trauma patient with compression fractures in his spine after falling 30 feet off a ski chair lift ... AWESOME!]

I think we have Canadians who have 'done it all' here - Gamma Knife, surgery in Ontario, surgery in BC, surgery in the US and watch & wait (and some who have done more than one like MK!).  I was seen by Dr. Rutka in Toronto - and he is extremely knowledgeable on ANs and a very nice person.  I agree with MK - his neurosurgeon doesn't have the best bedside manner and likely no where near the successful outcomes as the BC surgeon (MK, Adrienne and OPP2). 

I am W&W - the tumor is small, aside from hearing loss, tinnitus and intermittent balance issues, I am asymptomatic.  NO clue how long I will stay W&W - research shows it could be 10+ years (or forever) as the tumor may never grow, or well, I could find out the tumor has grown and I will have surgery sometime in 2012 (or maybe 2013 depending on my surgeon choice and wait lists). I haven't gotten my head around Gamma Knife - but may by the time it is required to treat (which can be a much shorter wait list if my memory serves me well).   I have four young children (my oldest is nine), I work full-time, I just started a new job blah blah blah - I don't want to treat it until it is necessary as I am having too much fun with everything else.  I am hoping for the 10 year plan.  BTW - I am now pretty darn laid back about this tumor but wasn't when first diagnosed.

All the best - take of yourself but also take care of your children.  I know getting use to a new place is very difficult.

Title: Re: Finally diagnosed! In Kingston Ontario
Post by: Kathleen_Mc on July 27, 2011, 03:26:49 am
Another Canadian here. Sorry you have to join us but I hope you will find help and support here.
I would agree the medical system here in Ontario is frustrating, as a nurse working in a hospital I assure you it's frustrating from "this side" as well.
I hope you find some answers when you see Dr. Rutka.....if you are able to maybe keep the appointment to see Dr. Chen as well and then you're already all "set up" for a second opinion if you want it! (no matter which one you see first)
Title: Re: Finally diagnosed! In Kingston Ontario
Post by: valerie_g on July 28, 2011, 06:42:09 am
Hi Gael,

Another Canadian, not to far from Kingston (Ottawa). I am being follow by Dr. Schramm (just like Jo). I had Cyberknife treatment in March here in Ottawa and so far so good. The Cyberknife team following me are Dr Malone and Dr Sinclair and they are fantastic. My AN is very small but started growing after being discover. I'm receiving great care here in Ottawa. The people on this forum have been truly amazing. If you need info on Cyberknife treatment here in Ottawa or anything other question please do not hesitate to contact me.   
Title: Re: Finally diagnosed! In Kingston Ontario
Post by: dragonmama on July 28, 2011, 01:21:40 pm
Try to respond to everyone (hope I haven't missed someone)...

Ann - sounds like Alberta has cheaper MRI rates than Ontario - if I could have come up with $1000 I could have had mine sooner.

I have definitely gone through bouts of feeling like I'm freaking out inside while walking around trying to remain calm and normal for my kids. I'm mostly over that emotional roller-coaster (I think), partly due to the calming effects of knowledge (the unknown is scary, so I'm working on transforming it into the known), and also the great effect of channelling that instinctive "danger alert!" extra energy into practical action - organizing appointments, etc. Like you, I'm hoping I'm on W&W until my kids are mature enough to cope with surgery.

Ha - you're the first person who realized my name is spelt like the Queen's sports teams. I've had people look at me blankly when they ask me how to spell my name and I respond "just like the Queen's team"... even though the Gaels make the newspaper headlines quite often!

Kathleen - yes! I am planning to keep both appointments, with Rutka and Chen, and thinking of getting my GP to also refer me to the cyberknife clinic in Ottawa.

I can imagine some of the ways that the health care system can be frustrating from your side of things. Having moved from BC to Ontario, I was really floored by just how bad the doctor's shortage is here. I never had a problem finding a doctor in BC, and there were so many accepting new patients that I could shop around. Also, I can't help but compare the wait times for ENT's. In BC, I had a sinus infection (seemed mild to me), but my GP felt that there were other sinus issues that an ENT needed to look at - she got me an appointment within the week. Here, I have a potential diagnosis of AN that needs confirmation, and waited 2 months (although it would have been 8 months without my GP and myself nagging and hustling for that expedited appointment).

How can anyone work effectively with that kind of patient-load? I'm thinking of the ENT and his whole office staff here - I mean, they are so inundated with referrals that it took them two weeks to dig down through the incoming pile to get to the one from my doctor for me! I've worked in busy office environments and I know that when things get that hectic and overwelming you start forgetting things and regular methods are no longer efficient enough, and everyone is in react mode (as opposed to proact mode) and the work that does get done is just not of the same quality. But I've never worked in an office where the outcomes of my work could have critical health or life and death consequences.

I totally respect you for taking on the job of nursing. I know I could never handle it, and I know it is a vital job - kudos to you!

Valerie - I'm looking into the cyberknife. Not convinced it's the way to go for me, but with all these positive reviews it must be worth checking out.

Title: Re: Finally diagnosed! In Kingston Ontario
Post by: yardtick on July 28, 2011, 01:33:26 pm
Hi Gael,

Yes another Canadian here from Hamilton (Stoney Creek) Ont.  I see Dr Rutka, he is a very kind, caring man.  He has a great bedside manner and a sense of humour. 

I was first diagnosed after a year long battle with "sinus issues" and finally surgery to deflate a "bulging ear drum" by a local ENT.  He told me at my follow up appointment, he had no idea what he found, but it wiped out the three small bones in my middle ear and it was very sticky.  He had to use a facial nerve monitor on me to make sure I suffered little or no damage to my facial nerve.  Weeks later the pathology report is in and I have a facial neuroma.  The ENT is shocked and he told me he has never come across anything like this before. 

At this point I am suffering from brutal headaches and facial pain and he could not help me.  He just left me hanging with my family doctor trying to treat the symptoms.  It took one year of craziness before I started to do my own research and stumbled across this forum.  A deceased forum member put me in touch with Dr Rutka.  The best move I ever made.  He has been seeing me for 4 years now.  I am watch and wait and that is okay with me.  I still suffer from headaches (have one and facial pain, but as long as my tumour is stable I can battle the pain with cheap drugs. 

My case is rather unusual, so do not worry about your possible outcome.  You are in very good hands.  Get the second opinion, I did from Dr Cusimano at St Michael's.  If you would like to talk on the phone PM me with your phone number.

Anne Marie 
Title: Re: Finally diagnosed! In Kingston Ontario
Post by: mk on July 28, 2011, 05:37:58 pm
One more suggestion that I just thought is that once you get the appointment with Dr. Chen contact his secretary, explain that you are from out of town and ask her if she can arrange so that you can also see the neurosurgeon he works with, Dr. Pirouzmand, on the same day. This should save you two trips, because generally you have to meet both doctors.

Title: Re: Finally diagnosed! In Kingston Ontario
Post by: dragonmama on September 18, 2011, 10:51:55 am
Off to see Dr Rutka tomorrow and his surgical partner Dr Tymianski Wednesday. Does everyone else get as nervous as I feel?

Title: Re: Finally diagnosed! In Kingston Ontario
Post by: tenai98 on September 18, 2011, 03:11:23 pm
Feeling nervous is very normal....being armed with all ur questions is beneficial. Also having someone with you to write down what Doc says is great....Good luck...
Title: Re: Finally diagnosed! In Kingston Ontario
Post by: mk on September 18, 2011, 03:17:18 pm
Hi Gael,

Being nervous is expected, but at least it is good that you have the ball rolling.

Dr. Rutka is objective, thorough and he will tell you his honest opinion. Don't be afraid to ask what his recommendation is (i.e. W&W, type of surgery etc) and what outcomes he expects. Make sure to print out the list of questions that you will find on several threads and if possible make a note of the answers. Like Joann said, if you have someone with you, so much the better.

As for Dr. T., don't expect great bed side attitude, but see what he has to say and how it compares with what Dr. R. says.

For both appointments go prepared for a long wait -sometimes they get held up at the hospital and you may have to wait a lot.

Let us know how your appointments go.

Title: Re: Finally diagnosed! In Kingston Ontario
Post by: dragonmama on September 18, 2011, 04:15:47 pm
I have my questions printed, plus a list of my meds & supplements, a brief history of my AN symptoms, copy of my MRI, copy of my audiology report, point form health history... I can't think of anything else they'll need.  ;)

I am going solo - hubby has to stay with kids as my 6 year old has an anxiety disorder and we've never been able to leave her with anyone else.  :( As it is, she's going to be a handful for the day. Send calming energy!  :)
Title: Re: Finally diagnosed! In Kingston Ontario
Post by: yardtick on September 20, 2011, 12:26:11 pm
Good luck!

Anne Marie
Title: Re: Finally diagnosed! In Kingston Ontario
Post by: dragonmama on September 20, 2011, 07:16:23 pm
Thanks for the support everyone! After listening to the risks of surgery and the risks of each complication and the treatment plan (aka more surgery) for each complication, I asked Dr Rutka what the risk was of leaving the tumour where it is IF it isn't growing, and he said that since I've already lost all my hearing there was absolutely no risk to that at all.

Now I'm starting to wonder if I want to make war on this tumour through surgery or radiation, or (make love or war?), if I want to send it loving energy and see if it will feel warm and cosy feelings and curl up and shrink or stay the same size so we can peacefully share the same headspace without introducing a ton of risks and trauma into my family's life. LOL!  :D
Title: Re: Finally diagnosed! In Kingston Ontario
Post by: mk on September 21, 2011, 09:45:49 am

My understanding is that Dr. Rutka's practice is favourable for W&W for small tumors. Apparently they have a study going on. Ann, "Keeping Up" is a patient of Dr. Rutka's associate, has 4 kids (so no desire to rush into surgery) and she has been successfully in W&W for a small AN. She has done a lot of research and she knows about the study. See her recent post is in the following thread:

Title: Re: Finally diagnosed! In Kingston Ontario
Post by: dragonmama on September 22, 2011, 08:02:10 am
Thanks for the link Marianna - I'm heading over to Ann's thread.
Title: Re: Finally diagnosed! In Kingston Ontario
Post by: Keeping Up on September 22, 2011, 09:52:46 pm
Hey Gael

I do have a few W&W studies if you are interested , one is lead by Rutka and the second study is British - please PM me your email and I can forward them to you.  Both are now a few years old.  Mikey made reference to a Danish study on the W&W thread but I have yet to find reference to it on the internet.  (I have a tendency to read studies!)

I am several mm's behind you so am in a pretty good position.  I like your analogy of war vs peace.  The decision to treat and how to treat is so individual that it is difficult to compare.  I, so far, am very happy with the 'make peace' approach.  My tumour is very small and causes very few issues.  Dr. Rutka's study is very clear that not treating tumours will result in hearing decline regardless if the tumour grows.  However, IMO, surgery generally has very poor hearing preservation rates and radiation isn't likely to preserve over the long term either (i.e. very similar to W&W).

So, for me - would treating proactively help in the long-term - and I don't think so.  I will lose my hearing but I have a very good chance this tumour may never grow (i.e. the Rutka study of 65% of small tumours don't grow and this new Danish study).  I will show up for routine MRIs (the likelihood of this tumour having a tremendous growth spurt and going from very small intracanicular to pressing on the brainstem is highly unlikely) and keep reading studies to see where I get to.

We are getting ready for ski season here in Calgary (despite having awesomely warm weather at the moment) and I am even contemplating figure skating lessons to somewhat keep up with daughter's skating life. 

I am so very lucky to have a small tumour that has so little impact on my life.  I hope it works the same for you.

PM if you are interested in the research!


PS - my tumour is entirely intracanicular as at the last MRI.  As one of Rutka's associates once told me, the ENT community doesn't typically look to measurements until its expands into the CPA as intracanicular tumours can't possibly compress the brainstem.  So while,  my footnote indicates a tumour of 5mm x 8mm by ENT definition, I haven't even gotten to the starting line.  Not sure if your tumour fits the same description or not - but feel that it is a necessary comparison for my laissez-faire attitude to the tumour.  Aside from you can't compare treatment choices by individuals, you also can't compare measurements as my tumour is actually not out in the open yet!