Getting Nervous

[Sible]

Hi All,

So here is my story. It was mid-November 2013 and I had been dealing with intermittent ear fullness, somewhat unsteadiness in my step.  I figured I was just battling the effects of a mild inner ear infection.  Wrong.  A few days later the right side of my tongue went numb (like it had been scalded) and after two days of this I called my Dr. on a Thurs. He couldn't see my till Tues., so I decided to go to our walk in clinic available on Saturday mornings.  Needless to say I didn't see my regular GP.  I did however at that time request a hearing assessment and a referral to the ENT.  Audiology appt. was booked by me for the following Friday.  After hearing assessment they noted a low frequency hearing loss in the right ear and proceeded because time warranted to completed the ABR test. Results of these assessments suggested a referral to ENT and recommended MRI.  Saw the ENT approximately 2 weeks later and after a 5 minute assessment he concluded an MRI was appropriate.  MRI was booked for Jan. 23rd, 2014.  I felt something was wrong so I called the hospital and requested to get on their cancellation list.  Good idea.  Was able to get an MRI scheduled for December 14th, less than 2 weeks time
(pretty good by Canadian standards).  After a roughly 5 week work up of audiogram, ABR test (Abnormal), ENT consultation and an MRI, the result was a 2.1 cm Acoustic Shwannoma on Dec. 18th-Merry Christmas to me! 
The ENT informed me that I was going to require surgical resection of the tumor because it was filling the auditory canal and was displacing my brain and 4th ventricle, that I would lose my hearing in my right ear and I would be off work (I'm a Spec. Ed. teacher) for a month which turned into 3 months after a second visit.  I'm now scheduled for a pre-op appointment with Dr. Parnes at University Hospital in London (Canada), not sure who my neurosurgeon will be.  I don't even know what day the surgery will be.  Does this seem a little odd?
Does anyone have any experience with Canadian surgeons.  I feel like surgery is my own option.

Thanks for listening everyone. 

[Jim Scott]

Hi, Sible ~

Welcome to the ANA Discussion Forums. 

I'm sorry you were diagnosed with an acoustic neuroma but hope we can help with information and support.

We have some Canadian members that may be able to offer some advice and/or suggestions as well as more insight into the Canadian health care system than I can offer (as an American).  I'm sure you'll find the support you seek on these forums. 

Please try to keep us updated on your AN journey.  Thanks.

Jim

[Echo]

Hi Sible,

Welcome!  I live in Toronto so I can certainly offer some help. 

Are you sure you are scheduled for a pre-op with Dr. Parnes and not just a consult.   Pre-op appointments are usually done after you have your consult with the surgeon and agree to have surgery.  There's paperwork and testing to be done at pre-op appointments and then you are provided with a surgery date after the paperwork is processed.  If this is your first appointment with Dr. Parnes, it will most likely be a consult and he can tell you who the neurosurgeon is he partners with and what the wait times are for surgery.  I was told the Retrosigmoid approach requires a neurosurgeon only, while Translab requires both an Otolaryngologist and a Neurosurgeon.

You do have choices through our med system.  You can request more than one consult and you can choose the surgeon you wish to have operate on you.  You do not have to stick with whomever the ENT refers you to if you are not happy with them. 

I have heard of Dr. Parnes through ANAC (Acoustic Neuroma Association of Canada), and I believe he has a very good reputation.  Having said that, I would still recommend you try and get at least one or two more consults to compare your options.  Ask your ENT or GP for additional referrals.  Dr. John Rutka, Otolaryngologist at Toronto General is tremendously experienced with Acoustic Neuromas.  He partners with Dr. Michael Tymianski, Neurosurgeon, and he can also set up a consult for you at the Toronto Western Hospital with Dr. Norman Laperierre who heads up the Gamma Knife.  Dr. Michael Cusimano at St. Michael's hospital is both a highly skilled Neurosurgeon and he also performs Gamma Knife Radiosurgery. There are a few other specialists at Sunnybrook Hospital, but you would have to contact ANAC for their names as I'm not overly familiar with that hospital.  There is a Dr. Akagami (I believe that's the correct spelling) who is well know in British Columbia for Retrosigmoid surgery - if you wanted to travel outside of Ontario and still have OHIP coverage.   Cyber Knife is available in Hamilton and Ottawa, but to be honest I've never heard of anyone getting Cyber Knife treatment for AN's at those locations - doesn't mean they don't do it though!

I was diagnosed with a 1.8cm AN in the spring of 2012.  I was offered Retrosigmoid surgery, Translabrynthine surgery and Gamma Knife.  By June 2013 my AN had grown to 2.4cm and I chose Gamma Knife.  I was told surgery would average 9 hours without complications, I would be off work 3 - 6 months.  Gamma Knife was a one day event and I was off work for 3 weeks.  It was a long hard decision to reach for many reasons, but one I am most happy with.   Please take your time to do your research and get at least one more consult.  You want to make the best choice possible for your personal situation.  The size of your AN certainly falls into an acceptable size for Gamma Knife - I am not obviously a specialist in this field so I can't say if there are reasons due to the AN location that Gamma Knife would not work - but I wouldn't rush into surgery without checking all my options. 

Please feel free to email me with any questions.
Take care and best wishes!
Cathie.

[TexasSprinter]

Hello Neighbor in the Great White North.  So sorry to hear about your diagnosis, but I'm glad they found it sooner rather than later.  I'm not a doctor but brain displacement sure seems to be a good indicator that surgery will be required.  Keep us posted on what your learn after your appointment. 
Scott

[kcarloy]

Good luck in your journey. Many of us are pretty much back to normal life and work 6 wks after surgery. Consider all of your options before you make your decision. Karen

[Kathleen_Mc]

Sible: As Cathie has pointed out surgery is not necessarily your only option, Toronto Western and Sunnybrook also have neuro surgery departments and Western has gamma knife centre, if you wish to seek out second or third opinions your ENT/Neurologist should be able to refer you to someone. When I was diagnosed I didn't have any options, it was hurry up and get on the table, but with my regrowth I did have option of gamma knife (I opted for surgery the second time around though). My first surgery was at Toronto Western, the second at Sunnybrook.
Kathleen

[Sible]

Hi Everyone,
Its been awhile and I still have my tumour.  I took everyone's advice and got a second opinion.  Flew out to b.c. and met with Dr. Akagami and happy I did.  He provided much better stats for my required surgery and I have consented with him. Will either be in July or Sept. Weird I'm actually positive and excited about surgery now. I know it is going to be a long road but positive attitude, faith and good support are getting me through this.
Thanks to all of you for the advice and ongoing kind words.
Julie

[TexasSprinter]

Julie--surgery date fixed yet?  I also felt excited in a way to have my surgery date set 

[Sible]

No date yet. Told me either July or September. Believe it will be September as new tumours much more critical than mine bump me on the list. I'm OK with that though. One week left and its summer vacation for me!
Thanks for checking in!
Julie

[Brad1230]

Hi Sible,

I read your story and it is an interesting one. I am glad that you got your diagnosis quickly mine took almost a year to diagnose! (Canadian Medical System). I was disgnosed with almost the same size tumour as yours and underent Gamma Knife treatment in Winnipeg about 2.5 years ago. This was deemed to be my best choice by a Neuro Surgeon in Thunder Bay where i was first diagnosed. I now live in the Hamilton area and i am seeing Dr. Reddy from Hamilton Health sciences, he is much more experienced with accoustic neuromas than my Dr. was in Thunder Bay and deals with about 30 per year. I do not regret getting the Gamma Knife and was back to work within a week but i do not think the treatment worked (although i have heard that it works for the majority of people, although there seem to be a lot of people on this forum who have had gamma or cyber knife and then surgery anyways).  My symptoms have continued to increase and the Tumour has grown over my past couple of scans (last scan was 2.3 cms and i am waiting on the results of a scan done a month ago). I guess the only advice i can really offer is to ask a lot of questions, and talk to multiple dr. and resources. it does sound like if it is displacing your brain and effecting your tongue it may be something that has to be surgically removed......My symptons include facial numbness, balance issues, severe tinnitus, hearing loss (almost no longer usable in my tumor ear), and a full fealing that keeps feeling fuller as the years pass! Stay positive and good luck!
Brad

[v357139]

Just keep in mind that each doctor recommends what he is most comfortable with, whether it be surgery or radiosurgery.  I have seen alot of good posts about Akagami in this forum.  You can search on his  name if you want to.  Best of luck.

[Sible]

Surgery booked. Oct 7, 2014.  All preop appointments complete. Dr. Akagami was the best choice for me. My tumor has grown by 4mm in the last 6 months it has got to go!  I am pleased with his team and am hoping for a good result with Dr. Westerberg and Dr. A team. Currently I have full right side facial numbness, numb tongue, tinnitus, mild balance issues (they said my body has done great to compensate). I'm excited, nervous and missing my kids. Will be away from them for 2-3 weeks.
Anyway I will keep you all posted. I also believe that I got a quick diagnosis because I was my own advocate.
Blessings,
Julie

[CS]

Hi Julie,

Praying and Good luck on your surgery next week! I just had my op done last Wednesday (09/24) and so far, it's great

[minerva1221]

Sending good thoughts and prayers for you, Julie! 


P.S.  I'm a Julie, too!  :-)

[Kathleen_Mc]

Hope all goes well Julie!