Very disheartened... but on my way to somewhere.

[petgroomer]

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".

[Kaybo]

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   

[Amplified2000]

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

[Jim Scott]

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

[Sheryl]

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

[Tumbleweed]

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

[petgroomer]

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!!!!!!!!!!!

[CHD63]

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

[opp2]

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

[petgroomer]

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.

[tenai98]

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

[petgroomer]

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.

[davjack]

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

[opp2]

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.

[tenai98]

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