Author Topic: From Canada  (Read 333 times)

Mitz16

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From Canada
« on: December 09, 2017, 03:05:39 pm »
Hi everyone just joined!  I’m from BC Canada and I have a 3 cm AN on my left side.  I’m still waiting on a doctor to see me! Here in BC after calling incessantly I got an appt for a consultation in April 2018!  To far away for my liking !  I’m looking into another province .  I just saw a video on You Tube from the Doctors on the Skull Based Institute in LA using the endoscopic procedure which looks so great.  Can anyone tell me their thoughts? Costs etc.  Thank you!
Diagnosed with 30x28x26 mm acoustic neuroma
Progressive hearing loss and tinnitus
No other symptoms yet..

ColleenH

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  • Do not fear, for I am with you. Isaiah 41:10
Re: From Canada
« Reply #1 on: December 14, 2017, 12:23:59 pm »
Wow that is a long wait. Universal health care eh? We typically wait in the US 1-2 months for the first visit which actually is good. At the time I did not think that, but in hindsight it gave me time to do my own research, calm down and be ready with practical questions instead of hysteria or terror. The cost? That would be hard to define since I had insurance. Seems like from start to finish mine was well over $ 250,000, but insurance paid most of that, thank God.
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of tumor; no facial issues
Readmitted on 5/7/17 for CFL, had a lumbar drain inserted; CFL repair surgery on 5/14/17 and sprung on 5/15/17.

Echo

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Re: From Canada
« Reply #2 on: December 15, 2017, 03:55:22 pm »
Hi Mitz16,

I'm also from Canada and just noticed your post today.  You may want to move it into pre-treatment so more people can find you (your inquiry is in Post treatment).   As for Canadian Doctor's, you don't mention who you are waiting to see, but I would highly recommend you reach out for a consult with Dr. Ryojo Akagami in Vancouver.  He is extremely well known within the Canadian Acoustic Neuroma folks for surgery on large and complex tumors.  I know of several people here in Ontario that have travelled to BC to have their surgery performed by him.  He is very highly regarded.  Wait times for consults for people travelling from Ontario have been in the 3 or 4 month range.   If I were living in BC, I wouldn't consider trying to see anyone else!  Do some searches on this forum for other Canadians and you will find many posts about Dr. Akagami.

Best of luck.
Cathie
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital
Sept. 2014: 1 Year post GK, AN reduced to 1.8cm.
Sept. 2016: 3 Years post GK, AN 1.8cm remains stable. Life is good!

JNelson24

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Re: From Canada
« Reply #3 on: December 18, 2017, 05:59:39 pm »
Hi everyone just joined!  I’m from BC Canada and I have a 3 cm AN on my left side.  I’m still waiting on a doctor to see me! Here in BC after calling incessantly I got an appt for a consultation in April 2018!  To far away for my liking !  I’m looking into another province .  I just saw a video on You Tube from the Doctors on the Skull Based Institute in LA using the endoscopic procedure which looks so great.  Can anyone tell me their thoughts? Costs etc.  Thank you!

Hi Mitz16,
I live in BC too, in the Fraser Valley.  I was diagnosed with my AN via CT scan in July 2014, and then had a private MRI done in Abbotsford after I was put on a lengthy provincial MRI wait list.  I had a consultation with Dr. Ryojo Akagami in January 2015, and then was put on his surgical wait list, which he said could be up to a year.  He ordered a follow-up MRI for me in June 2015, and my AN had grown from 2.3 cm x 2.3 cm to 2.9 cm x 2.9 cm in about 10 months, so he moved me up on the list.  He performed my retrosigmoid surgery in August 2015 with Dr. Brian Westerberg, and I had an excellent result with no facial paralysis or hearing loss.  It took me several months to get past my balance issues, but I'm pretty much back to 100% normal except for tinnitus in my tumor-side ear (only aware of it about 10% of the time).

I would highly recommend that you seek a consultation with Dr. Akagami and Dr. Westerberg.  I will be forever grateful to them for the job they did, as well as for the treatment I received at Vancouver General.  It was difficult being on a waiting list and not knowing when the next step in the process would come, but I couldn't have possibly had a better outcome.  I'd be happy to answer any questions I can if you have any.

Mitz16

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Re: From Canada
« Reply #4 on: January 09, 2018, 02:17:21 pm »
Thank you so much Everyone .. I called my Cousins husband who is a doctor and was right on it!  I have an appt on Feb 2 Nd with Dr Westerburg and I’ve had two more hearing tests since my MRI and my hearing has deteriorated so Im thinking my AN has grown so I’m hopiing I get the surgery sooner!  Will keep you posted !  I know Dr W works with Dr Akagami so fingers crossed! This is so emotionally difficult! Thanks again
Diagnosed with 30x28x26 mm acoustic neuroma
Progressive hearing loss and tinnitus
No other symptoms yet..