Author Topic: Very disheartened... but on my way to somewhere.  (Read 12556 times)

opp2

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Re: Very disheartened... but on my way to somewhere.
« Reply #15 on: December 29, 2009, 07:09:04 pm »
It's an excellent article. This is very good news for all of us Canadians. Onward and upward kids, onward and upward.
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: Very disheartened... but on my way to somewhere.
« Reply #16 on: December 30, 2009, 01:07:55 pm »
Rhonda,

I have been following this thread and I prepared a rather length response, but then I accidentally hit something and all was lost (grrr...).  Anyway, I will retry:

First of all I am very sorry that you have to face this very extraordinary situation. If I recall well, it wasn't just the Ontario doctors that said that your tumor was inoperable, but even the mighty HEI, even though usually they are very keen to operate. So we should always keep in mind that this is really an extraordinary situation.

Second, at least half of the people here have encountered a doctor (ENT, or neurosurgeon) who wasn't aware of the current radiosurgery methods, or even worse, was totally misinformed. So this cannot be a fault of the (whatever) health care system that a country has but could be attributed either to the training doctors get at the medical school, or to the fact that they don't bother keeping up to date with progress in the field.

Third, since the medical system is supported by tax payers money, it is reasonable that they need to obtain expert opinions in order to authorize expensive treatments. Otherwise, I am sure that some critics wouldn't wait to criticize them for wasting tax payers money. This is not different than what many of our US friends encounter when waiting for their private insurance to authorize treatment.

Having said all this, we all know that you need and deserve this treatment, so you need to find the right doctor who will certify that CK treatment is the way to go. My suggestion is to try to get a referral to someone who is knowledgeable on radiation techniques - I would try Dr. Schwartz, from Sunnybrook- TWH (This is also the doctor that Vivian B. is seeing and he is a GK expert), or Dr. Lapperiere (he is an FSR expert and very approachable doctor from what I have heard). They should be able to certify the type of treatment that is most suitable for you.

There are a couple of other points in some posts that I would like to touch upon:
Donnalynn, I am very sorry for what you have endured over the years and you were unfortunate to meet some very rude doctors, to say the least. I agree with you that Alberta in many ways is a "frozen medical wasteland". I know a friend in Calgary (major centre) who said that there weren't enough hospital beds available when she was giving birth. I don't want to politicize this thread, but many people feel that this is the result of chronic underfunding (not to say undermining) of the public health care system by the provincial government for obvious reasons.

Second point about the bureaucracy issue. The publically funded system may have many fallacies (such as long wait times to see specialists etc.), but bureaucracy is not one of them. All we need to do is show our health card to obtain treatment. There are no co-pays, health networks, pre-existing conditions, cobras, etc etc and we never get to see a bill.

To get back to Rhonda, I really hope that this new year will bring you new hope and a way to deal with your problem successfully.

Best wishes,
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.

yardtick

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Re: Very disheartened... but on my way to somewhere.
« Reply #17 on: December 30, 2009, 01:39:22 pm »
Rhonda,

There is a Dr Cusimano at St Michael's Hospital also.  I saw him a few years back. 

Anne Marie

PS Marianna, that was so eloquently said.  Thank you for putting my thoughts into words. 
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: Very disheartened... but on my way to somewhere.
« Reply #18 on: December 30, 2009, 07:18:29 pm »
Hi Rhonda,

I just caught up with your thread and everybody's reply. Marianna summed it up pretty well. If you need more infomration on the Gammaknife treatment at Toronto Western, I will be more than glad to speak to you. You can E-Mail and we can exchange phone numbers if you like.

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

petgroomer

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Re: Very disheartened... but on my way to somewhere.
« Reply #19 on: December 31, 2009, 12:00:57 am »
Hey Girls and Boys,,,
In from a 2 day party venture in Toronto..(well deserved!) :)
I have been keeping tabs on this thread from my new blackberry but cannot seem to be able to respond from it.
I am newly in and need a night of rest before I can respond respectively but I can tell u that the responses I have got are amazing and thorough!
Donna-Lynn, I also had a difficult time getting a family doctor.  There is a 1 1/2 year waiting list where I live and I only moved up here 2 years ago.  Didn't need a doc then... so didnt worry about it.  When I needed one, it was a 1 1/2 year waiting list for an area of 4 cities with no option to what doctor you get.  I only got one sooner because one of my customers of a dog I groom works in a doctors office and got me in... (great to have connections!!!)
Marianna,, you gave a very informative and interesting response.  I agree with everything you said.  It cannot be blamed on only one area, it is a web of issues.
Vivian, the GammaKnife cannot be used on me,, as it cannot treat tumours over 3 cm.. mine is 6 cm.
In all,, I must admit, it is 1 a.m. and I am ready for bed as I walked home from the house party we were at tonight and am exhausted and cold! 
I look forward to having the holidays over so docs are back at their desks ready to hear my pleas.... :)

LOVE YOU ALL!!!!! p.s. Avatar was an excellent movie!! 3D... cried my eyes out at the end.. but then,, i am a suck!
OKAY,, one more thing... it would be amazing to be able to get together with all you just to celebrate life!!!  Nothing more, but to bring in 2010 all!!!!!  HAPPY NEW YEAR!!!!!!!!!!!!  Welcome to a NEW beginning!
xo
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

CHD63

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Re: Very disheartened... but on my way to somewhere.
« Reply #20 on: December 31, 2009, 08:18:19 am »
Rhonda .....

Glad you had a chance to have some fun ..... you deserve it!

..... and a Happy New Year to you.  Things will fall in place and this time next year you will really be celebrating!

Thoughts and many prayers that all of the right doors will open quickly and you will be on your way to recovery!

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Keeping Up

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Re: Very disheartened... but on my way to somewhere.
« Reply #21 on: December 31, 2009, 08:40:23 pm »
Rhonda

Glad you had a fun time in Toronto (I live here so probably forget how neat a city it is).  I am 4 subway stop ride from all the university avenue hospitals.

I will agree with Marianne - however, may be a bit more abrupt, while not perfect, I have no doubts that I can get some of the very best medical treatment in Toronto. The bashing on this site that goes on against the Cdn system is quite horrible - yes you have to wait, but most of us have NON CRITICAL medical issues.

I have no need to go outside of this country to pay for medical care.  I have seen specialists with only a a few weeks wait at TGH (big octology centre with Dr. Rutka), the gamma knife centre (Toronto Western not PRINCESS MARGARET ... they wouldn't know much about CK or Gamma knife if they don't use it) and the neurosurgeons at Toronto Western.  I mightn't always like their bedside manner, but have no doubts they will treat me well.  I have the money to go to the US for treatment without even consulting the bank but why would I when I can get it all here, world class, and for free!  [will admit I pay big taxes for this privilege - I also live in Toronto, and can show up at most hospitals for an appointment with just 30 minutes warning if I was sufficiently motivated)

Alberta the 'waste land' ... in defence, both of my parents are cancer survivors.  My father had prostate cancer (removed 2 year ago) and my mother had breast cancer (double mastectomy just over a year ago).  All with tremendously wonderful doctors in ALBERTA no less (they live in Calgary).  They can easily afford US care, but again, why go when it is all here, world class - lots of times Cdn doctors train/educate in the US but don't want to deal with that system (law suits, insurance domains, denial of care if no insurance etc).  My father's surgery was six weeks after diagnosis with a huge name in prostate cancer (can't remember the specialty).  My mother's wait was a bit longer - about 2.5 months so she could enjoy her month long cruise in Europe prior to treatment. She linked up with all kinds of alberta healthcare sponsorsed support groupds (remember all free) and is doing very very well 12 months later.  The doctors were fantastically flexible and available.  Canada ain't perfect - my mom should have pursued a $3000 test in the US to determine oncotype of the cancer to avoid chemo (she chose not to, against her kids and husband's advice ... we still think a very odd personal decision).  The oncotype isn't covered in Canada, and SHOULD BE covered.

So, I think we need to tune down the negativity about the Canadian system here, or at least allow people like me to preach how wonderful the system had treated them (and their families - cancer survivors,  four kids, etc I have been all over this city seeing various different specialists). 

Rhonda - I hope you don't get too discouraged.  I hope you find the right doctors (they are out there - but don't expect warm and cuddly, I still struggle with that factor) who can tell you about the treatment for your type of tumor (it isn't an AN so the 3 cm limit mightn't apply, the gamma knife in Toronto principally treats malignant tumors in all kinds of different locations - perhaps a vagus (??? get that right) schwannoma might be something they can provide you guidance. ) Don't get discouraged when you speak to a specialist not in the gamma knife or CK field - doctors can't be expected to know all specialize treatments, and will definitely not offer opinions)  [However, maybe you have already been there and they said they can't treat it - not sure I have read all your posts.  If so, out of coutnry CK treatment, if recommended, should be easy to obtain - before GK was available and WITH A HISTORY, very important if you are thinking about CK, Ontario paid for many to go to Pittsburg GK.]

My computer won't allow me type any more.

Good luck - remember CAnada is great.

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

Adrienne

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Re: Very disheartened... but on my way to somewhere.
« Reply #22 on: December 31, 2009, 08:57:10 pm »
Here! Here!  Ann.  Both my husband and I feel we have received AMAZING treatment here in Canada.  Me for my AN, and my hubby for a lobectomy for lung cancer.  From the appointments, to the tests, to the specialists, to the hospital staff and care, we were BOTH extremely well looked after and have had amazing results.

Sure-there are horror stories.  There always are.  I'm sure I would be singing a different tune if the first specialist I met was rude, or uneducated, or glum about my outcome.  Sure, I would have liked to meet my neurosurgeon faster, the wait was agonizing at the time.  But my surgery, and hubby's surgery were FREE.  Zip, zilch, nadda, and we had incredibly talented individuals.

I do agree with the others on here though.  If one specialist says the situation is hopeless, MOVE ON and find someone that will do something for you.  But hey-it's like that in almost any situation (retail stores, restaurants, schools.  You speak up until you're heard.  It's just harder when it's your health...........)

Hugs Rhonda.  Hope you get answers and a helpful specialist SOON.  The wait for a course of action is agonizing.

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

tenai98

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Re: Very disheartened... but on my way to somewhere.
« Reply #23 on: January 01, 2010, 06:58:09 am »
In favor of the Cdn system, I got an appt with an ocologist and ENT within hours of seeing my ENT...mind you, he did send me to the wrong dept....was wondering why the cancer clinic was involved....anyhow, the docs there are now referring me to the proper dept and will get an appt for Feb/10 as I will be gone the whole month of Jan.....And irts all free....when i decided on surgery (Dec 08) and saw my neurosurgeon, I could have had it done  Feb09  but wanted to wait til my vacation to Florida was over...So I no sooner arrived home on March 31, pre admin done april 2 and surgery april 7....so overall its not a bad system, just a system with faults...I dont think there is a perfect system out there...
Just my two cents..
JO
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

petgroomer

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Re: Very disheartened... but on my way to somewhere.
« Reply #24 on: January 01, 2010, 07:45:26 am »
It brings me a great feeling to read the past posts about the positive sides of our medical system.  I look so forward to my appointment this month and to go in with a better mind set will prove valuable to my outcome.
You made a good statement Adriene when you said " If one specialist says the situation is hopeless, MOVE ON ",,,
I can't explain without sounding naive, but... it never occured to me to find another specialist at the time.  To me, I have not had to face anything like this before, so when someone tells me what they did, I believed them.  I did seek further and was also told by 8 specialists in the U.S. that saw my MRI that it is too large and inoperable, as well as 2 more in Canada.  So the CK treatment is definately my ONLY option. 
I am taking every body's comments in and I have a better understanding of the system.  I will succeed :) 
LOL.. listen to me now all cheery and positive but watch what I'm writing in 13 days!!!!!
Have a great New Year everyone!!! xo
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

CHD63

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Re: Very disheartened... but on my way to somewhere.
« Reply #25 on: January 01, 2010, 09:19:23 am »
A big thank you to Ann, Adrienne, Jo, and others for giving the "other side" of the story.  Insurance issues always seem worse when a struggle occurs for us personally ..... whether it is the US or Canadian system.  As has been said, no system is perfect ...... we need to remember this.

I firmly believe that we (or our families) are ultimately the ones who must advocate for ourselves.  If things are not going well, then we must speak up and ask for more consideration, be it medical treatment or insurance coverage.

Rhonda, I truly believe that when you persevere in your self-admitted unusual case, you will find the proper treatment that is timely and affordable.

Thoughts and prayers continue .....

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

yardtick

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Re: Very disheartened... but on my way to somewhere.
« Reply #26 on: January 01, 2010, 07:14:09 pm »
Wow Ann thank you for your reply.  I too am a strong advocate for "our" Canadian system.  As you said "most of us have NON CRITICAL medical issues."  My husband works in health care and he too agrees how fortunate we Canadians are to have what we have.  He works in a teaching hospital and is amazed at all of the international student McMaster attracts.  Many of these students feel that the Canadian system is one of the best in the world.

Now my dear Rhonda, you are breath of fresh air!  I just love your spunk.  Adrienne gave you some very good advice "MOVE ON and find someone that will do something for you."  Your situation is a little more difficult than the rest of ours.  Hang in there, you know all of us on this forum are supporting you. 

As my son Anthony's friend Amanda, who passed away almost 2 years ago at the age 17 from cancer, always said "Chin up buttercup!"

Anne Marie

PS Michael Moore's Sicko is on CBC as I type.   

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

Jim Scott

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Re: Very disheartened... but on my way to somewhere.
« Reply #27 on: January 02, 2010, 03:23:44 pm »
I have no substantive comments to make, pro or con, regarding Canada's health care system but since both 'sides' have had the opportunity to state their views, I'm going to put on my moderator's hat and ask that any further 'debate' on the advantages or shortcomings in the Canadian health care system be confined to PMs.  I really prefer not to lock the thread but will if it becomes rancorous over this issue.   

We strive to maintain a congenial atmosphere on these forums and while disagreement is certainly not prohibited, once separate points of view on a specific issue have been stated without reservation (or censorship by the moderators) it is time to 'move on' and simply agree to disagree, if that is the case.  To trade opposing opinions back and forth in the public forums serves no real purpose and certainly doesn't help other AN patients, especially if they don't happen to be Canadians.  With that in mind, I'll assume that those who find themselves in disagreement on this issue will either move their opposing opinions to PMs or, better yet, simply rest their case, as it were, and let others think what they will.  I've found that approach saves a lot of stress - and typing.   

Thanks to all for your understanding and cooperation.

Jim  Scott   
Global Moderator
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.

sgerrard

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Re: Very disheartened... but on my way to somewhere.
« Reply #28 on: January 02, 2010, 10:11:59 pm »
Yup, Rhonda has a difficult and unusual case, and the important thing is that she find a way to get treatment for it. We can leave the health care system discussion to other forums.

It sounds like there is an appointment coming up on the 14th that will be interesting. It has happened before that once there is enough communication about the serious of a case and the limited choices of treatment, the impassable hurdles get cleared and things start happening. I am hopeful that there will be resolution for Rhonda as well.

Steve
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.