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Author Topic: My big consultation adventure  (Read 12108 times)

Keeping Up

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Re: My big consultation adventure
« Reply #15 on: March 03, 2011, 10:03:35 pm »
Great news Marianna

Dr. A sounds simply awesome - several here have had great stories in the past year.  Also, wonderful to get on a priority list - two months isn't a long wait at all (and you get to finish up the school year hopefully!)

Keep us all posted.

Fingers and toes crossed for you.

Ann
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dx Dec/08 - 5mm x 8mm AN
'watch and wait'

MARAKI

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Re: My big consultation adventure
« Reply #16 on: March 04, 2011, 02:59:26 am »
Marianna I am so happy for you. Everything will be better now and you will have the time to be prepared for the surgery.(mphke to nero sto aulaki, pou leme!!! ;)
I don; t know how to say this in English, so translate this for me.
My thoughts are for you!
Please think positive!

Maraki
 
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sgerrard

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Re: My big consultation adventure
« Reply #17 on: March 04, 2011, 11:28:56 am »
Now that sounds more like it. :)

Dr. A. is Dr. Akagami, is that right?  I have heard only good things about him.

Are we not supposed to use his name, or does everyone just like using abbreviations?

Steve
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8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

opp2

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Re: My big consultation adventure
« Reply #18 on: March 04, 2011, 03:13:58 pm »
Sooooo happy for you Marianna!

Now it's time to sit down and decide what to do, what to do...Do you see Dr Westerberg too?
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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.

opp2

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Re: My big consultation adventure
« Reply #19 on: March 04, 2011, 03:18:07 pm »
Quote from: sgerrard on March 04, 2011, 11:28:56 am
Now that sounds more like it. :)

Dr. A. is Dr. Akagami, is that right?  I have heard only good things about him.

Are we not supposed to use his name, or does everyone just like using abbreviations?

Steve

My postulations are that it may be a) easier to type Dr. A and b) some folks might be concerned that they didn't spell it properly, and there are some who might not be sure the proper name. My husband affectionately called him Dr. Oragami for a while. We had consults with Dr Chen, Dr Izakawa and Dr Akagami so he got a little confused sometimes. I believe Dr. Akagami knows about this forum too. No worries about using his name I would think.
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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.

mk

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Re: My big consultation adventure
« Reply #20 on: March 04, 2011, 04:22:11 pm »

Nikki, this is so funny. My husband uses exactly the same name for Dr. A. Now, what coincidence would that be!

and yes, I saw Dr. W. too (Steve, I am just too lazy to type the entire names, especially when being at the airport). He was very nice too and we had a long chat about Queen's, as it turns out that he went to medical school there.

As for the decision on what to do ... hmmm...let me see...
I already signed all the forms, and I will be waiting for Wendy to give me a date. Then we will need to scramble to get my mom on a plane from Europe so that she can come over to help ... Tough to organize, but at least now there is light at the end of the tunnel and I am very hopeful.

Marianna
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GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

opp2

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Re: My big consultation adventure
« Reply #21 on: March 05, 2011, 06:29:23 am »
Yay!!! so happy! All the best. If I can help I will, let me know.
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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.

sodiumpentathol

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Re: My big consultation adventure
« Reply #22 on: March 06, 2011, 10:07:26 pm »
I just had my surgery and wanted to share my thoughts.  I had an AN 2.8cm. Dr.'s Backer & Dr. Kletzker from St. Louis at St. John's hospital did an awesome job!!  I had no facial parylysis, no nausea, no vomitting, no need for pain meds after surgery, no vertigo.  They monitored my facial nerve during the operation.  They said they got 99.8% of tumor. Just dealing with lightheadedness now and extreme tiredness/weakness.  Today is post-operative day 4. My right face is numb, ear is numb and swollen.  100% hearing loss, but have total facial nerve function. Eye is able to blink. CAN'T COMPLAIN!! They did a marvelous job.  I saw all the youtube videos and was sure I was going to have problems. I have not had ONE problem that I thought I would have.
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Cheryl R

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Re: My big consultation adventure
« Reply #23 on: March 07, 2011, 08:19:33 am »
That is wonderful and at 4 days doing better than most!        Still take it easy as there can be good days and then not as good if one does over do.      Always good when we do hear of such good outcomes!                    Cheryl R
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Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Tumbleweed

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Re: My big consultation adventure
« Reply #24 on: March 24, 2011, 09:37:16 pm »
Good luck, Marianna! We're all rooting for you!

Best wishes,
TW
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L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

novagirl

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Re: My big consultation adventure
« Reply #25 on: March 29, 2011, 01:53:58 pm »
Good luck, Marianna - please keep us posted. Lots of people are praying for you!
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Right AN 10 x 10 x 7 mm - dx 7/28/09; w&w for three years
CK at Stanford October 2012 - Dr. Chang and Dr. Soltys
Oct'12: 15 x 14 x 10 mm
Oct'14: 12 x 6 x 5 mm

rayden1

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Re: My big consultation adventure
« Reply #26 on: March 29, 2011, 02:46:56 pm »
Hi

so glad for you .Well done.

Ann x
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Sonja

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Re: My big consultation adventure
« Reply #27 on: April 17, 2011, 12:08:54 am »
MK:

Sorry to hear about your missed consultations. I know it can be very frustrating especially when you want answers. Sometimes things happen for the best. Maybe you will learn later why you missed the consultations and it ends up a good thing.

I would not even think about going back to the first doctor,100% chance of paralysis does not seem correct. Maybe he/she meant that you may have some paralysis (could be very minor and hard for anyone to even tell) right after surgery.

Good luck with finding the right doctor and your AN journey.

Sonja
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Symptoms 2005
AN diagnosed January 2007
Watch & Wait until now
Surgery (Translab) scheduled February 18, 2009 HEI (Dr. House, Dr. Schwartz, Dr. Stefan)
No servicable hearing in affected ear
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