Author Topic: Finally diagnosed! In Kingston Ontario  (Read 13914 times)

mk

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Re: Finally diagnosed! In Kingston Ontario
« Reply #15 on: July 28, 2011, 05:37:58 pm »
One more suggestion that I just thought is that once you get the appointment with Dr. Chen contact his secretary, explain that you are from out of town and ask her if she can arrange so that you can also see the neurosurgeon he works with, Dr. Pirouzmand, on the same day. This should save you two trips, because generally you have to meet both doctors.

Marianna
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.

dragonmama

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Re: Finally diagnosed! In Kingston Ontario
« Reply #16 on: September 18, 2011, 10:51:55 am »
Off to see Dr Rutka tomorrow and his surgical partner Dr Tymianski Wednesday. Does everyone else get as nervous as I feel?

Gael
Left SSD since 2010
Diagnosed 7/2011
Retrosigmoid 21 June, 2013
AN 2 cm
Left side palsy from stretched 7th nerve
Chronic neck pain, muscle spasms, headaches

tenai98

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Re: Finally diagnosed! In Kingston Ontario
« Reply #17 on: September 18, 2011, 03:11:23 pm »
Geal
Feeling nervous is very normal....being armed with all ur questions is beneficial. Also having someone with you to write down what Doc says is great....Good luck...
Joann
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

mk

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Re: Finally diagnosed! In Kingston Ontario
« Reply #18 on: September 18, 2011, 03:17:18 pm »
Hi Gael,

Being nervous is expected, but at least it is good that you have the ball rolling.

Dr. Rutka is objective, thorough and he will tell you his honest opinion. Don't be afraid to ask what his recommendation is (i.e. W&W, type of surgery etc) and what outcomes he expects. Make sure to print out the list of questions that you will find on several threads and if possible make a note of the answers. Like Joann said, if you have someone with you, so much the better.

As for Dr. T., don't expect great bed side attitude, but see what he has to say and how it compares with what Dr. R. says.

For both appointments go prepared for a long wait -sometimes they get held up at the hospital and you may have to wait a lot.

Let us know how your appointments go.

Marianna
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.

dragonmama

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Re: Finally diagnosed! In Kingston Ontario
« Reply #19 on: September 18, 2011, 04:15:47 pm »
I have my questions printed, plus a list of my meds & supplements, a brief history of my AN symptoms, copy of my MRI, copy of my audiology report, point form health history... I can't think of anything else they'll need.  ;)

I am going solo - hubby has to stay with kids as my 6 year old has an anxiety disorder and we've never been able to leave her with anyone else.  :( As it is, she's going to be a handful for the day. Send calming energy!  :)
Left SSD since 2010
Diagnosed 7/2011
Retrosigmoid 21 June, 2013
AN 2 cm
Left side palsy from stretched 7th nerve
Chronic neck pain, muscle spasms, headaches

yardtick

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Re: Finally diagnosed! In Kingston Ontario
« Reply #20 on: September 20, 2011, 12:26:11 pm »
Good luck!

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

dragonmama

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Re: Finally diagnosed! In Kingston Ontario
« Reply #21 on: September 20, 2011, 07:16:23 pm »
Thanks for the support everyone! After listening to the risks of surgery and the risks of each complication and the treatment plan (aka more surgery) for each complication, I asked Dr Rutka what the risk was of leaving the tumour where it is IF it isn't growing, and he said that since I've already lost all my hearing there was absolutely no risk to that at all.

Now I'm starting to wonder if I want to make war on this tumour through surgery or radiation, or (make love or war?), if I want to send it loving energy and see if it will feel warm and cosy feelings and curl up and shrink or stay the same size so we can peacefully share the same headspace without introducing a ton of risks and trauma into my family's life. LOL!  :D
Left SSD since 2010
Diagnosed 7/2011
Retrosigmoid 21 June, 2013
AN 2 cm
Left side palsy from stretched 7th nerve
Chronic neck pain, muscle spasms, headaches

mk

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Re: Finally diagnosed! In Kingston Ontario
« Reply #22 on: September 21, 2011, 09:45:49 am »

My understanding is that Dr. Rutka's practice is favourable for W&W for small tumors. Apparently they have a study going on. Ann, "Keeping Up" is a patient of Dr. Rutka's associate, has 4 kids (so no desire to rush into surgery) and she has been successfully in W&W for a small AN. She has done a lot of research and she knows about the study. See her recent post is in the following thread:

http://www.anausa.org/smf/index.php?topic=15990.0

Marianna
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.

dragonmama

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Re: Finally diagnosed! In Kingston Ontario
« Reply #23 on: September 22, 2011, 08:02:10 am »
Thanks for the link Marianna - I'm heading over to Ann's thread.
Left SSD since 2010
Diagnosed 7/2011
Retrosigmoid 21 June, 2013
AN 2 cm
Left side palsy from stretched 7th nerve
Chronic neck pain, muscle spasms, headaches

Keeping Up

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Re: Finally diagnosed! In Kingston Ontario
« Reply #24 on: September 22, 2011, 09:52:46 pm »
Hey Gael

I do have a few W&W studies if you are interested , one is lead by Rutka and the second study is British - please PM me your email and I can forward them to you.  Both are now a few years old.  Mikey made reference to a Danish study on the W&W thread but I have yet to find reference to it on the internet.  (I have a tendency to read studies!)

I am several mm's behind you so am in a pretty good position.  I like your analogy of war vs peace.  The decision to treat and how to treat is so individual that it is difficult to compare.  I, so far, am very happy with the 'make peace' approach.  My tumour is very small and causes very few issues.  Dr. Rutka's study is very clear that not treating tumours will result in hearing decline regardless if the tumour grows.  However, IMO, surgery generally has very poor hearing preservation rates and radiation isn't likely to preserve over the long term either (i.e. very similar to W&W).

So, for me - would treating proactively help in the long-term - and I don't think so.  I will lose my hearing but I have a very good chance this tumour may never grow (i.e. the Rutka study of 65% of small tumours don't grow and this new Danish study).  I will show up for routine MRIs (the likelihood of this tumour having a tremendous growth spurt and going from very small intracanicular to pressing on the brainstem is highly unlikely) and keep reading studies to see where I get to.

We are getting ready for ski season here in Calgary (despite having awesomely warm weather at the moment) and I am even contemplating figure skating lessons to somewhat keep up with daughter's skating life. 

I am so very lucky to have a small tumour that has so little impact on my life.  I hope it works the same for you.

PM if you are interested in the research!

Ann

PS - my tumour is entirely intracanicular as at the last MRI.  As one of Rutka's associates once told me, the ENT community doesn't typically look to measurements until its expands into the CPA as intracanicular tumours can't possibly compress the brainstem.  So while,  my footnote indicates a tumour of 5mm x 8mm by ENT definition, I haven't even gotten to the starting line.  Not sure if your tumour fits the same description or not - but feel that it is a necessary comparison for my laissez-faire attitude to the tumour.  Aside from you can't compare treatment choices by individuals, you also can't compare measurements as my tumour is actually not out in the open yet!
« Last Edit: September 22, 2011, 09:54:45 pm by Keeping Up »
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

 


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