Author Topic: Consultations went very well  (Read 4451 times)

opp2

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Consultations went very well
« on: January 22, 2010, 08:55:35 am »
I got back home last night from Vancouver. Warm, mild, green Vancouver  :D

After all this time, I've finally confirmed what I thought would be the case. I will be having surgery with Drs. Akagami and Westerberg in Vancouver. I was pleased with the way the entire surgery was discussed, with the confidence both exuded and the results they have achieved for their patients over the years. The procedure is a little different from all those previously discussed with me including retrosigmoid as commonly performed. They use an endoscopic approach and the point of entry is similar to one I was reading studies about a couple of weeks ago. The positioning of the body is used to take advantage of gravity and makes retraction of the brain stem unlikely.

I feel this will be the best avenue for me to remove the tumour and maintain the integrity of my facial, trigeminal and vagus nerves. I don't expect to retain any hearing, and will be terribly sad to lose it. In the grand scheme of things, this is not, by far the worse thing that could happen.

I was told up front surgery will be in 3-6 months and I will have from 2-3 weeks notice of the date. They did fax a new referral for another MRI for May so I'd say it will be closer to 6 months than 3.

What I did find interesting is that each surgeon still feels the strange head issues I have on standing up are not related to this tumour. I asked if I should be seeing the doctor to begin investigating this but they both said I should wait until after surgery to see. They are intrigued, I can tell.
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

leapyrtwins

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Re: Consultations went very well
« Reply #1 on: January 22, 2010, 11:55:40 am »
Opp -

glad you have a plan in place.  Sounds like you have a couple of great docs.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

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lori67

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Re: Consultations went very well
« Reply #2 on: January 22, 2010, 12:02:37 pm »
Opp -

Glad your consult went well and you are happy with your choice of doctors.   :)  Hopefully you won't have to wait too long to get your appointment.

Vancouver - warm, mild and green?  Hmmmm...are you sure you were in the right place?   :D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Jim Scott

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Re: Consultations went very well
« Reply #3 on: January 22, 2010, 02:16:23 pm »
Nikki ~

I'm pleased to learn that your doctor consult in Vancouver was productive.  As we often state, the most difficult part is over.  Now, the wait.  Oh, and the surgery, of course.  ;)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Sue

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Re: Consultations went very well
« Reply #4 on: January 22, 2010, 02:58:27 pm »
Lori,

El Nino is sending our winter south to California.  Here in Vancouver USA yesterday the sun was out for a large portion of the day and the temperatures were very mild, close to 60 degrees.  8)  Daffodils are poking out their heads from the ground, and it felt very "Springy" out there.   Right now, the place to be is in the Pacific NW, weather-wise.   The Winter Olympics people are a bit concerned for the snowpack at the lower elevations.  Most of it will be okay, but it might be problematic for some of the events.

Nikki/Opp2:

Best of luck to you with your eventual surgery and recovery!!

Sue in Vancouver, Wa USA

Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
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suboo73

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Re: Consultations went very well
« Reply #5 on: January 24, 2010, 04:41:19 am »
Hi Nikki,

As Jan said, it sounds like you have a plan - wonderful!
It must be a huge relief to be on track at this point and getting treatment scheduled.

We are here for you, so keep us posted with the surgery date, etc.
In the meantime, i hope you can relax and enjoy this time with your family.

My thoughts and prayers are with you.
Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

yardtick

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Re: Consultations went very well
« Reply #6 on: January 25, 2010, 02:10:40 pm »
Nikki,

Did OHIP pay for your consultation with Drs Akagami and Westerberg?  I've been wondering if I should make the journey out to Vancouver.  Did you contact them via email or at their office?  How long did it take to get an appointment?

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

opp2

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Re: Consultations went very well
« Reply #7 on: January 25, 2010, 03:40:28 pm »
Hi Anne Marie.

Are you going tomorrow? I can't make it. Too soon after getting back from time off to leave the kids again.

OHIP did pay for the consults and my doctor faxed a referral to them. However I had been emailing back and forth with Dr. Akagami prior to and he told me he would see me. I saw Dr. Westerberg via Dr. Akagami's office.

It might be worth it for you to send your discs out for him to look at, in the very least.

Best!

Nikki
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

yardtick

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Re: Consultations went very well
« Reply #8 on: January 25, 2010, 05:10:34 pm »
Hi Nikki,

I cannot go tonight either.  Headache and knee problems from a fall back in early Nov.  I think I will take your advice and send him my discs.  Please PM me with his all his addresses.

Thanks alot,
Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Vivian B.

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Re: Consultations went very well
« Reply #9 on: January 26, 2010, 07:13:53 am »
Hi Nikki,

I am so glad everything went well. It sounds like you are much more comfortable about your decision. Keep us posted on  your surgery date.


Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Debbi

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Re: Consultations went very well
« Reply #10 on: January 26, 2010, 07:19:02 am »
Nikki - glad to hear the news.  Now, I'll keep my fingers crossed that you get your surgery date earlier rather than later.  The waiting, in my opinion, was particularly hard.  Most people just want to get it over and get on with things!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

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