Question for any Canadians out there

[Brad1230]

I am a newly diagnosed with an acoustic neuroma. I live in Thunder Bay, Ontario  Canada(not the biggest city in the world). I am looking for some advice in where is best to get this treated? I understand there are only 3 Gamma Knifes in all of Canada. I also do not know if the surgery is something a regular neurosurgeon and ENT can do. I would expect that in Thunder Bay the ENT and Neurosurgeon do not do a lot of Acoustic Neuroma surgeries.  My AN is what I believe to be a medium sized tumor 1.9/1.2/1.0 .  This is all new to me. I need to know what kind of choices I have in our health care system.

If there are any Canadians out there. Where did you receive your treatment from? Did you have to travel for any therapy? Any advice would be greatly appreciated!!

Thanks,
Brad

[mk]

Hello Brad and welcome.

Your situation is not unlike mine, in that you leave in a small-medium sized city in Ontario. As you said correctly, given the population you can't expect to find a lot of expertise where you live. This was also true for me, even though I live in Kingston which does have a medical school. The most important thing when dealing with this diagnosis is to find an expert team, which most certainly involves travel (keep in mind that any travel due to medical reasons is tax exempt). Your AN is fairly small, so you have plenty of time to research. Make sure you have your GP request another MRI at 6 months, to confirm if there is growth.

For starters you should get referrals for experts in the closest centre, which obviously will be Toronto for you. Ask to get a referral for Dr. Rutka at Toronto General Hospital; he is  considered one of the top experts. Also try to get referrals for the team at Sunnybrook hospital, they do the largest number of these surgeries. I saw many surgeons in Toronto, but I ended up having surgery in Vancouver - my situation was more complicated though and I researched extensively trying to find the best team.

As far as GK goes, there is one in Toronto (Toronto Western Hospital), one in Winnipeg (which might be more convenient for you in terms of travel?) and one in Vancouver. There are also new CK centres in Ottawa and Hamilton Ontario.

You will most probably have to deal with wait times, since you are newly diagnosed and most probably your situation will not be considered as urgent. At least you don't have to deal with "out-of-network doctors, co-pays" and all this complicated stuff. Most provinces have agreements, so even if you are treated out of province OHIP would still most likely cover the cost.

Your AN is fairly small, so you have plenty of time to research in the meantime. Make sure you have your GP request another MRI at 6 months, to confirm if there is growth.
My big mistake initially was that I thought that I was limited to the neurosurgeon that I was initially referred to (a doctor who obviously didn't have the required expertise). I lost a lot of valuable time and got some bad advice because of this. I found out however that you can request to get referrals to specific specialists and that you need to be persistent. Make sure to keep records of all your reports and MRI disks, so that you can show them to the doctors you consult with. I can't stress enough how important for the final outcome it is to find a competent team for whatever treatment method you choose.
You can contact the Canadian forum ANAC for some information, although I am not sure how helpful they are these days. Don't hesitate to ask more questions or PM me if you need more information.

Good luck
Marianna

[Brad1230]

Thank you Marianna!

[opp2]

What She Said...Hi Brad, I am also from Ontario. Brampton area though. I also consulted with Dr Guha (Toronto Western) Dr Chen (Sunnybrook), a radiation oncologist from Toronto Western (though I'm sad to say I can't remember his name right now), Dr Freidman at House in California and Dr Akagami in BC. I finally went with Dr Akagami after booking surgery in California. I learned that you do have a say, and you MUST be your own advocate for medical care. This tumour is almost considered to be an elective surgery type of deal in that it is slow growing enough, you can choose not to have surgery. (Though there are folks on this board that have had some life threatening monsters that didn't give them an option.)

You have time to research. Take that time, talk to lots of people. You can call me if you like or email personally. I don't mind. Send me a message on this board and I will forward you my email.

All the best.

Nikki

[tenai98]

Hi Brad
Can't say anymore than what MK has said and opp2...My team was with Schramm/Benoit in Ottawa...Don't be shy to ask questions here...
JO

[Brad1230]

I am going into my first appointment Friday morning with a neurologist in Thunder Bay. I was wondering if I could get some advice from any of you.
Here is my history. I started to notice my hearing was becoming strained about 1 year ago. I mentioned it it my Dr. and he dismissed it. In February I was really having trouble hearing in social settings or with any background noise. The Tinnitus was getting worse. I was sent for a hearing test and was found to be within normal range. In April my hearing seemed worse and I was getting numbness in my face. I also noticed that I would get dizzy when I looked side to side. I finally convinced another GP to send me for an MRI (which I had in early July). I received the results middle of July. Here is what the MRI result said.
" An enhancing legion is seen in the left internal auditory canal extending from the cerebellopontine angle. It demonstrates homogeneous enhancement. It has a morphology reminiscent of an "ice cream come". It measures 1.9 cm TR by 1.2 cm AP by 1.0 cm CC. The ventricles, sulci and cisterns are normal. The visualized orbits and paranasal sinuses are normal in appearance. Homogeneously enhancing left internal auditory/cerebellopontine angle lesion, given the morphology, is most compatible with an acoustic neuroma. Meningioma is also in the differential considerations".

I decided to go on my own for a hearing test last week and I am hearing out of my left side now at about 60%. My concern is that I have lost 40% in 6 months. Does that mean the tumor is growing?? I am worried if something is not done soon there will be no hope to save any hearing I have now (even though it is muffled). Do you all still have the Tinnitus, mine has become really bad. Almost a constant buzzing with occasional pings.

If it is growing quickly could it be cancer?
Any other advice I could go to the Dr. with would be appreciated!!
Thanks,
Brad

[Jim Scott]

Hi, Brad ~

I'm not a doctor but the MRI report makes it pretty clear that you very likely have an acoustic neuroma.  Rapid growth of these tumors does not indicate malignancy (cancer) which I'm sure your doctor will verify.  They are known to lie relatively dormant or very slow-growing for years, then, seem to experience a 'growth spurt' that usually leads to the manifestation of the usual symptoms (such as you've experienced) and an MRI scan that 'discovers' the tumor.  Yours is medium-sized and will have to be addressed relatively soon.  I'll leave the details to you and your doctor to determine. 

My advice is to be very sure the doctor you chose is well-experienced with AN removals and preferably has hundreds, not dozens, on his resume.  Unless you are dead-set against it, you may wish to inquire about the feasibility of undergoing irradiation for the AN, which is non-invasive and doesn't remove or destroy the AN but has the intent of stopping it's growth.   If possible, ask the doctor to supply you with the names and phone numbers of any AN patients that might be willing to discuss their experience as his (AN) patient.  If the doctor seems offended by this request or simply says 'no', ask why.  If you aren't satisfied with the answer, seek a different doctor.  Also ask him about the recovery period and how he intends to avoid post-op headaches and, especially, facial paralysis.  I asked my neurosurgeon all these questions (politely, of course) and he was happy to answer them, in detail.  I enjoyed a very successful AN surgery and a rapid, complication-free recovery, so I consider asking the relevant questions to be crucial to obtaining both information and building your confidence in the doctor as you face possible surgery.  Naturally, we stand ready to answer questions and offer you our full support as you begin your 'AN journey'.

Jim

[mk]

 Hi Brad,

As Jim explained these tumors are generally slow growing, but may experience growth spurts. We also had stories of patients with fast growing ANs, without having an indication of malignancy. Loss of hearing may or may not mean that the tumor is growing. In its presence an AN may destroy then nerve fibres slowly, even if it is not growing. Also hearing can be lost gradually, over the course of a few months or years, or overnight. Another MRI taken at a reasonable time interval, say of 6 months, can give some indication of the rate of growth (if any) at that time frame.

In terms of hearing tests, you should know that in addition to the pure tone threshold, what is most important is the level of word recognition that you have (it should be written somewhere in your report). You may have loss in the low, or high frequencies, or both, but if your word recognition is good, then a conventional hearing aid can help. However if the word recognition is poor (which unfortunately is common in AN patients), then your hearing is not considered "useful". In any case, these are all good questions to ask the neurosurgeon you will consult with.

In terms of the MRI report, without being a doctor, it basically gives you the dimensions of your AN: 1.2 cm AP is the measurement from front to back, 1 cm CC is the vertical dimension, and 1.9 TR is the transverse direction (from side to side). The transverse is very important, because it usually correlates with the degree of brain stem compression (if any) etc. The way your TR measurement is reported most likely it includes the portion (i.e. tail of the ice cream cone) going into the internal auditory canal. The other thing that your report says is that the ventricles, that are responsible for the circulation of the CSF fluid, are normal. This is good, as it means that the AN is not causing obstruction of CSF flow. The last thing the radiologist mentions is that although most likely the tumor is an AN, a meningioma is another possibility; these are also benign tumors of similar appearance and the treatment method is generally similar.

Lists of questions to ask the neurosurgeon have been posted in the forum, and you can find them by using the search function. Make sure to ask him what nerves are involved (especially facial and potentially the trigeminal, since you mentioned numbness). Ask about brain stem compression and how severe it is. Also what is his sense of urgency based on what he sees on the MRI scans.

As Jim mentioned, experience is key. My guess is that probably the neurosurgeon in Thunder Bay will not have sufficient expertise. You could ask him if he can provide any referrals for consultation for stereotactic radiosurgery. Even if you are not interested in this option, the GK centre at Toronto Western involves both neurosurgeons and radiation oncologists, and is a way to get into the loop and see other more experienced neurosurgeons. You can also ask your GP to provide referrals to the doctors I mentioned in my previous post.

Good luck with your appointment and keep us posted.

Marianna

[Keeping Up]

Hello Brad

I can't add much more than what Marianna has provided - a great starting point!  A great lesson in geography for Canadians (now that I moved out of Toronto to Calgary), you will be so much closer to Winnipeg than Toronto.  Not quite sure how long they have had their GK - I think it may be longer than Toronto.  Unfortunately, we have had very few Manitoba-types on these boards so little guidance on doctor selection.  You will also note that both MK and Opp2  (Nikki), both in Southern Ontario, left for BC for surgery.  Like our American peers, people do travel a lot to get these tumours treated.  (We also have Europeans, Asian and Australians on the site - so lots of people evaluating 'best of care' options.)

Of note, I echo her commentary on the hearing.  Typically, hearing assessment are not put in percentages (ie. retained 60% of hearing) - the scale isn't linear so a percentage scale is practically useless.  (I see it on this site a lot - and it is inaccurate, you aren't the only one.)  Look at your report for the Pure Tone Average (PTA) which is the average across the 500, 1000 and 2000 mHz zones as well as your work recognition (which will be a percentage at a certain dB threshold).   I can only guess when you say you have 60% of your hearing may translate to a PTA of 40dB - if that is the case, you are doing fairly well.  (Now if you have a PTA of 60dB that is quite a lot worse than 40dB PTA - 0dB and even negative dB is the best).  If you 'had' normal hearing a few months ago - that may event translate to any PTA better than 30dB (i.e. 0 - 30dB).  [Normal conversation is about 60dB and a lawn mower is 90dB, whispering is about 30dB as benchmarks.]  With ANs it is very common to have decent hearing at the 500mHz and quite poor hearing at the higher frequencies.  However, as you will note note on these boards - anything is possible.

As a point of comparison, I have ball-park as of about a year ago, a Pure Tone Average (PTA) of about 30dB - 20dB at 500 mHz, 30 dB at 1000 mHz and 40dB at 2000mHz in my AN ear.  (I think it is a bit worse but can't remember the exact #s.)  This is a mild hearing loss that doesn't require any aids at this time.  I have likely had 20dB to 30dB hearing loss in my left ear for many years so don't think I have experienced a sudden dramatic deterioration in my hearing - I just didn't realize I had a measurable hearing loss.   My non-AN ear has stupendous hearing and is just above 0dB in negative territory.  I misunderstand my husband a lot now and he yells instructions to be me a bit more so I suspect my hearing is worse now than it was last year. 

Hearing preservation and AN treatment is a difficult topic with many different opinions - I personally don't think there is much chance of preserving my hearing over the long-term with radiation or surgery, and since my tumour is still quite small, I am in the watch & wait category with my fourth MRI due in December after an almost 2 year hiatus (not exactly by choice ... but not sure it would make any difference!)  Many people will have very different opinions.

Hearing loss and tumour growth - hearing loss is not necessarily a sign of a growing tumour.  YOu will read many stories on this site which show enormous tumours with very good hearing, and non-growing tiny tumours which eliminate all hearing.  It is a bit of crap-shoot - unfortunately!

Not sure the above helps. 

Take care

Ann

[Brad1230]

Thanks to everyone out there for their feedback and answers to my questions. I am truly gratefull for the forum and the information I am getting here.

As far as my hearing goes I measured strictly on the Speech recognition part I went from 100% at 60dBHLs in February to 60% at 75dBHLs a couple of weeks ago. To be honest it feels like I hear almost nothing out of my left ear. I have no idea what direction sound is coming from anymore.

Once again thanks Everyone!! I have my appointment tomorrow morning at least now I am armed with a bit more information.