ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: petgroomer on December 22, 2009, 06:35:10 pm
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I found out last week that I need a big wig doctor to sign my Out Of Country OHIP request as a small town doctor will hold no standing and it will end up in file "G".
Today, I got a call back from my doctor at Princess Margaret Hospital in Toronto. I called him regarding getting CK. He said he has never heard of it at all and cannot comment on it. I said I have researched alot and am interested in having it done. He again repeated he had no idea and that he cannot advise me on getting it or back me at all.
I was pretty disheartened.
I asked him to send me to a Neurologist at Toronto General and he said that I would have to look into that. I let him know that he is my only hope in getting someone of caliber to look at and hopefully back me on this. I told him it is sort of like Gamma Knife but can work on larger tumours more accurately. I let him know that Ontario is getting two machines next year and he told me it would take a couple of years until it is fully functional to what I would need.
He did say he would hook me up with a doctor in Neurology.
I am happy to say, I already recieved my phone call regarding an appointment for middle of January. I am disheartened tho, because of the lack of knowledge the doctors in Princess Margaret have on CK.
I am sad for those who have had to lose a life to their lack of knowledge. Instead of sending them states side to get the surgery they need to stop the growth of inoperable tumours, they just sign you off as "done".. and to just go home.
I am thankful for his compasion in getting me an appointment, but also upset that I am still, "on my own in my battle".
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Sorry that you didn't get the news that you were hoping for...I must say I am a bit surprised when I look at your signature line...I didn't know that radiation was ever used on a tumor that big. Is it NOT an acoustic neuroma and that is why they can do it??
K ???
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Hi there,
Sorry for just seeing your issue for the first time, I'm pretty new around here. I had the same type of tumor as you do (mine was much bigger) surgically removed back in May of 2008 and have found my way here because I have also developed an AN. I had quite a unique experience with complications and such but I would be happy to talk to you about it if you ever wish to do so. Unfortunately for me, surgical removal was the only option because of the size and involvement of the tumor.
I know it's off the subject a bit but it is things like this that scare the carp out of me about nationalized health care.. as an American I hope that I never have to deal with that level of bureaucracy.
Best of luck!
Kevin
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Rhonda ~
Your negative experience with your doctor basically admitting he is clueless about CyberKnife is certainly reason for your being discouraged. Who wouldn't be? The normally sweet, placid and congenial DonnaLynn's acerbic comments on the Canadian health care system were a bit of a shock but the passion in her post emphasizes how serious the problems are in Canada.
Not to put too fine a point on it but this is often what happens when posturing politicians muck around in serious issues (such as health care) that they really don't understand, in order to achieve political ends (control of the population). All the while self-righteously claiming that they want to 'fix the problems' (in health care). Problems that could be just as well be corrected without the heavy hand of government, it's inevitable bureaucracies and often resulting corruption that ends up with incompetent doctors not helping patients with real needs tin order to game 'the system'. However, that's another subject for another thread - or, perhaps, another message board.
I'm relieved to learn that you were able to get a referral to a doctor specializing in neurology, who, one hopes, will be more knowledgeable and willing to help you in your struggle. I know you'll be victorious Rhonda because you definitely have the character to see this through to a successful conclusion (CK treatment). Of course, you have a bunch of folks rooting for you, right here!
Jim
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Jim - I agree 100% with what you said. Not wanting to stray too far from the original subject, this whole health care mess with the government intervening is quite frightening. I will be eligible for Medicare in 2-1/2 years and hope it doesn't get changed too much by then. It is scary what our Canadian friends have to say about their system.
Healthy New Year,
Sheryl
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Rhonda:
I'm appalled at what you're having to go through. But please don't give up or be discouraged. Keep pushing until someone gives you the referral you need. I am a true believer in CK, having myself had an extremely successful treatment. It's really been quite miraculous for me, actually. So do whatever you have to, "squeak the wheel" until you get what you need. And please remember how much progress you've made along this journey so far: several months ago, you thought you couldn't be treated and would have to just accept dying, but now you have treatment options and doctors who are willing to treat you. So keep up the good fight, fight for what you need, get it and thrive! You can do it!
Wishing you all the best,
Tumbleweed
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Thank you to all of you!!!
It will soon be the start of a new year and with that, a new MRI. :) Nothing would please me more than to see NO growth what so ever!!!!!!!!!!!!!!!!!!!
Jan 14th I have the appointment with the neurologist and with that I will have more to go on. He will either make or break my recovery.
In the meantime, my symptoms are very little compared to what I have read that others experience. I have made a facebook vagal schwannoma group and already have 5 other members. Only to recruit more 10th cranial nerve schwmmers that way we can beat this together!
Have a very Happy New Year!!!!!!!!!!!
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Rhonda .....
I cannot imagine having to fight for my own medical rights for treatment ..... what a nightmare! ..... and if Donnalynn is this upset, you have every right to be disheartened. Hopefully this neurologist will be more knowledgeable and sympathetic and you will get the referral you need for successful treatment.
15 years ago I had a small taste of what you are enduring when the most experienced neurosurgeon for treating trigeminal neuralgia was out of my insurance network. It was an expensive treatment that took us a number of years to pay for, but we felt there was no other choice. We fought the system to the top level, which resulted in some additional payment so I am with Donnalynn ..... fight this thing to the top level, if necessary.
Best wishes!
Clarice
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Hi Rhonda,
Merry Christmas, and good luck at Toronto General. When are you coming down?
You aren't really alone in your battle. We are all here with you. There is little that we can physically do, but we sure do support you, root for you, and it I could do something, I surely would.
I told my doctor I needed her to sign my forms for OHIP for me and she said she would. She knew nothing about it. I don't want to dis your doctor. But then again, I had to go to my doctor and say to her "I want an MRI and I want you to refer me to the MRI company in Tonawanda". She did it. My neurologist told me to come back if the numbness got worse. Holy Heck!!!
Am I getting what I need because I'm used to people doing what I tell them? I don't think so. I had the same issue when I was trying to get to see Dr. Akagami. I told him flat our I understood that I am from Ontario and he is from BC but I didn't think that I should be disadvantaged simply due to geography. It's a small small world, we must speak up for ourselves. After all we are fighting an insurance company aren't we??? The Ontario Health Insurance Plan. OHIP> Every insurance company will fight you not to make a pay out.
I'm with you Rhonda!! call me if you need me. I left you my phone number. If you need it again, let me know I'll send it. I don't know what I can do, but I sure will do something if I can.
Nikki
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Kaybo... I must explain that Cyberknive CK is different than Gamma Knive GK.
I am having CK which can work on tumours over 3 cm.
GK cannot work on tumours over 3 cm.
Don't ask me the difference! lolol
They do have GK in Toronto, but it cannot be used on me.
:)
Nikki, I hope I get as lucky as you!!! That is for sure! I will not end my battle... period!
My treatment I have already been quoted from California will be $200,000 plus my airfare (two times there) and my hotel stays. There is NO WAY I can afford that.. not at all. I could not even get a loan for that much.
I have a new quote "I CAN'T AFFORD TO LIVE".... literally.
Even knowing the size of my tumour, I don't think it will ever kill me. I just think it will render some of my functions of my body to NIL. But then again... no body really knows or nobody is really telling me.
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Rhonda,
Have you thought of going to the newspaper? I wonder if thatwould help. I myself, due to regrowth want cyberknife but no idea when it will be in Ottawa. I have tried (not pro actively at this time) contacting CHUM but no response yet. I'm going to have my sister, who is fluent in French ( I havent used French in over 33yrs) email them and she if she gets a response....I'm going to try and find that segment of W5 that Donnalynn is talkingabout...Maybe we should all band together( us ontarioans) and see if they will do a segment on us....Well I'm off to Mexico for a month....and I want just for 30 days put it behind me and enjoy myself....I thought this battle would be over by now (dx Aug/08...surgery April/09) but the battle continues and I WILL WIN!!!!!
JO
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I am going to give this next appointment on Jan 14 a try. IF they still look at me like I don't know what I'm talking about, then I have some ideas in mind. ???
I still need to think about myself and getting the help I feel I need. Notice I say "I", as here in Ontario, they feel there is no treatment for me. So I am not ready to contact any shows or newspapers as this will only fuel a fire against me.
I am going to seek help from the suggestions Donna-Lynn advised me to look into government wise. THEN if I get no response, at that time I will seek public routes. Not only for myself at that time, but for others.
I mean, I have one jaw that has enlarged lymph nodes lining it, the other jaw has a very large gland the size of a walnut and the back of my base of my skull has enlarged lymph nodes only to have the doctor tell me I have to live with it and they are not sure why they are like that only that they feel it's because of the tumour and it's effect on my body. They did not ever scope me or test anything. >:(
p.s. I also contacted CHUM myself several times only to have a large language barrier problem. I then emailed them and then posted the email in translated french too. They did call me back then with someone who could speak english as well. All I asked was if their CK machine would treat tumours 6 cm X 4 cm. She immediately said, I cannot discuss our machine with you, you will have to get a doctor to refer you for us to do that.... WHATEVER! Help me find one who WILL do that.
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So Kevin had his removed, so it's possible...for 200 grand. Wow. But the doctors in Canada told you it was inoperable, right? I don't get that at all. I am so surprised to hear that the health system up there is like it is. Down here in the States a lot of ppl have been thinking your health care system is way better than ours, or maybe not so much better as less expensive. And it looks like they want to make ours more of a socialized medicine type situation, which is very scarey. I'm really sorry to hear this. There must be someway. It has to turn out ok. How about your church or any community groups? Maybe they could help you raise the money. I hope I don't sound like a naive dope saying that. I will pray for you. Keep the faith...DJ
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Have you thought about contacting the drs at Ottawa and Hamilton who are named in the news paper and asking if you could have your doctor refer you to them? If I find their names, their email is usually posted in their bios I'll send them to you. Send them an email directly and outline the situation. These doctors must be getting their CK training from someone? Dr Chen perhaps? Cyberknife? It can't hurt to try that.
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woohoo
Thank you Nikki,
I did a search on google news after reading your post...Ottawa should have a cyberknife by May....I am so keeping my fingers crossed.
Rhonda
here is the website, if it works
http://www.canada.com/health/CyberKnife+revolutionizes+brain+surgery/2365293/story.html
Jo
I am definitely going to ask for a consultation with Drs Sinclair and Malone....this thurs I see a radiologist and another ENT
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It's an excellent article. This is very good news for all of us Canadians. Onward and upward kids, onward and upward.
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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
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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.
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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
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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
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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
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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
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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
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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
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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
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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
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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.
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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
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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