Looking for Canadian kindred spirits

[CindyLu]

I am a newly diagnosed Canadian living in the Greater Toronto area. It has been a long haul for me waiting for referrals and diagnosis, and my current issue is trying to find a urologist who specializes in IC. My urologist is sweet and his assistant is wonderful, but he wants me to see someone else and for now I am not getting any treatments and I am playing the waiting game. He did a cystoscopy without distention on me and did not find ulcers or obvious damage (correct me if I am wrong but that is not the gold standard for diagnosis anymore) , so was reluctant to diagnose me. A year later he finally conceded that I have IC. So, the referral game began. A month after diagnosis my urologist's assistant has been turned down by a doctor in St. Catherine's and (not accepting new patients) and is now working on another one in Toronto. If that one falls through I guess she is going to try Dr. Nickel in Kingston. It could take up to a year to see anyone if I am lucky enough to get on a waiting list. Long gone are the days when I would have scoffed at driving 3.5 hours to see a doctor. No problem. I would crawl on my knees to get there now! i am actually considering flying to New York City to see a specialist there. My best friend lives there so for air fare and a few hundred dollars, I can at least get a consult with someone and maybe get a plan for treatment. It is so frustrating. For now I am trying to stick to the diet and see if that helps.

[KimP]

Hi Cindy,

I know of a Uro that specializes in IC and right now as soon as I saw your post, his name just went out of my mind.... please give me a couple of minutes and I'll find his name for you.

Take care
Kim

[KimP]

Hi Cindy,

I found it... the Dr's name is Jeffrey Charendoff... here's the link to the College of Physician's and Surgeon's website... http://www.cpso.on.ca/Doctor_Search/summary.asp?Type=ADV&intCurrentPage=2&sNameRefNo=0038784

Also, you might want to try Dr. Leslie Carr.

Good Luck,
Kim

[CindyLu]

Kim. Thanks for your reply. My local urologist tried Dr. Carr and she turned me down. The usual thing in Ontario, ie. not accepting new patients.

Dr. Charendoff is on my list too. My urologist thought that he was just kind of a regular urologist like himself, but his name keeps cropping up in the IC world, so I will phone my urologist's assistant and give her that name to try too. It says he is accepting new patients on the College of Physicians website.

Thanks for your support. I simply cannot wait to get a doctor. I am trying to avoid flying to the US to get some help.

Cindy

[KimP]

Hi Cindy

Glad I can be of help. I didn't realize that Dr. Carr was turning down patients. I do know she ran the pelvic health clinic at Women's College Hospital back a few years ago, but they had to close it down due to lack of funding. The Board of Directors simply would not support the clinic- a lot of Dr's went to bat for the clinic. I also think it was a political thing going on... not much was said.

Talk to you later,
Kim

[Rose Fish]

Hi Cindy: Yes Dr. Carr is no longer seeing IC patients. Try Dr. Herschorn at Sunnybrooke. He is seeing IC patients and is very up on the latest treatments.

[CindyLu]

Thank you so much for the information. I will look into that.

[KimP]

Hi Cindy,

Dr. Herschorn's first name is Sender, I beleive. My Uro left the business and I need to find a new one.... I just might also look into Dr. Hershorn myself...

Happy Monday


Kim

[CindyLu]

Yes. It is Sender. I looked it up on the College of Physician's site. He isn't accepting new patients, but I have him on my list of Dr.s to try if the one my doctor is currently looking into doesn't work out. My current urologist who is looking for more of an expert on IC for me isn't exactly rushing into getting the necessary paper work done and when I spoke to his assistant she said my referral has been sitting on his desk (for weeks now) waiting for his signature. How frustrating is that? While I burn and give up all the foods I love, not to mention wine, the paperwork sits there. So I am trying to be patient and not feel like a victim of the medical system....hard not too when I am already feeling like a victim of this frustrating illness. Thanks for your help Kim.

[CindyLu]

Wow. What a nightmare. It is so frustrating to be sick and not able to find someone to care for you. I am calling my urologist's office tomorrow to hound them about my referral, and I emailed my family doctor abut my problem getting a specialist, and he is having his office work on it for me as well. So, fingers crossed everyone.

It is a uniquely Canadian perspective on medical care, and all systems have their down side I guess. All I know is that if I could pay someone close to home to deal with my case, I would gladly do it. It will be interesting to see how long it takes me to get in to see a specialist once I find one to actually take me. Probably 8 months.

My question is, if you are a urologist, why can't you treat IC? Give me a break...:confused:

[Krisi]

I am sorry it is taking you so long to get an appointment. My MIL is in St Catharines and she is having similar problems with the neurologists there. Apparently there are only 4 in all of the Niagara region. They think she has MS but everything has taken forever to process. She has been waiting many many months. My husband told her that we have like 8-10 just in one of the small towns near us not to mention all of them in the city. I know because my husband had a seizure and they got him a consult the next day with his new doctor by putting him in the hospital per the GP and then calling to refer him. My SIL had "elective" surgery on her lung to repair damage that was causing her lung to continually colapse. She waited 4 days in the hospital with a tube in her lung because it was considered elective. I think it is nice that it is free, but having to wait so long for a consult or surgery is ridiculous. I really hope you get to see a doctor soon!

Krisi

[CindyLu]

I finally managed to get an appointment with a urologist in Toronto. I gave up on waiting for my current urologist who wasn't "comfortable" with IC and asked my GP to get me a referral. I waited 8 weeks for nothing, because my GP got me an appointment 2 days after I asked him, and it is a miracle in Canada, but my appointment is on July 10th. I couldn't believe it. So, I have a doctor now. Let's hope he can do something for me. I am having quite a bad week for flares. I am so over gritting my teeth and tolerating the pain.

[Krisi]

I am so glad you got an appointment! I hope the flares go away. I know how much that can just make your days horrible.

[Zygala87]

Hi CindyLu. I am so happy you have found someone that may help you. I live in Maine but my roots run deep in Canada. St. John N.B. and Prince Edward Island. I must say from hearing from my kin folks about their problems with Canada's health care system I think it is less then positive. I Pray to God the US never tries that system. I love Canada and hope no one takes offence. When my Cousin had to go to Boston for his cancer treatments it rather upset me. He waited too long and we lost him anyway. Very sad. I will says Prayers for your well-being. Hugs, Ziggy

[CindyLu]

I love Maine. I grew up in Montreal and we used to spend summers at Higgins Beach near Old Orchard. It is a lovely spot with less traffic than Old Orchard. I was hit by a car there as a kid and spent a summer in traction at the Maine Medical Center in Portland. Not the best summer, but I still love Maine. We travel to Nova Scotia or PEI in the summer now, but I want to go back to Maine soon.

[pingpong]

I hope I did this correctly. It's an article in the Akron, Ohio newspaper that describes the obstacles that people in the US with preexisting medical conditions face when they try to get health insurance.

http://nl.newsbank.com/nl-search/we/Archives?p_action=doc&p_docid=12188564E4DE5AC0&p_docnum=1

In case you can't open it, the article talks about insurance that is available for people with preexisting medical conditions who aren't insured through their jobs. It also describes Ohio's "open enrollment" for health insurance, when insurance companies doing business in Ohio must make health insurance available to any and all. As the article says, the companies must make it available, but not affordable. In some cases, people are quoted astronomical premiums, sometimes over $50,000 a year.

I lost my job in May and I'm able to get COBRA coverage, which means I pay my former employer $570 a month to keep the insurance I had when I was still at my job. I can do this for 18 months, and then I'm on my own.

Some Canadians complain about their health coverage, and many Americans are dead-set against any similar coverage in the US. I'd like to know why the coverage in the US is better than what Canadians have. Could someone answer that for me?

[Krisi]

@pingpong
If you have a problem in Canada you may have to wait a long time for treatment. Read my earlier post. I have family up there and it is hard to get appointments anywhere. My MIL had to wait since Feb to get an appointment with the neurologist so she still doesn't have a diagnosis for her possible MS, therefore they aren't treating it. A lot of GPs and specialists are also not taking new patients. Therefore, if you don't like your doctor it doesn't matter because your stuck with them no matter sometimes. This is what has been happening with my GMIL, her doctor isn't doing a good job treating her but she can't see anyone else. The doctors aren't paid what they are in the US, therefore a lot of them leave the country to pursue jobs in the US or elsewhere. If you need an MRI where I live I can promise you would get one in one - two weeks. Probably shorter. I got one in one hour ordered by my orthopedic. We have MRI centers here they don't. Sometimes if you want an MRI sooner you have to go miles and miles away to bigger cities to get treatment. Not to mention some surgeries are only done in the big cities. Oh also in American if you go to the ER they have to treat you. Not so in other countries not really sure about Canada but I know New Zealand has very similar coverage and if you are from out of country you pay and pay big, they won't treat you unless you have a credit card limit that is available of other $25,000. I know this because a coworker of mine was over there and almost died from an infection because he couldn't get any treatment and he was doing some work for the New Zealand govt. In the US they can't deny treatment to anyone even if they can't pay.

The situation you are in is tough. Hopefully you will find another job soon. Trust me on this I would rather pay and get treatment then to have it taken out of my taxes and I not get any. If that was the case to I believe that if I lived in Canada I would already be on disability because of just the number of doctors appointments I have to go to. My husband was born and raised there and he has said he never wants that system of health care again after he found out how fast and reliable the system was over here. Also, the system reminds me of the VA, visit one and see how it is.

[pingpong]

I also have relatives in Canada, since I'm originally from there, and when my sister broke her leg in Ontario (an hour from a decent-size hospital) she was in surgery within 4 hours. When my mother broke her hip in Akron, Ohio (6 miles from one of the largest hospitals in the state), she waited over 26 hours for surgery.

It is true that hospitals in the US have to treat you in an emergency, but they also can take your assets to cover your bill. Oops - there goes your house! The number one reason for bankruptcy in the US is because of medical bills that are not covered by insurance or have out-of-pocket expenses that are unaffordable.

[Mothergoose]

Hi I have lived in Canada for ever, believe me if you live in Canada and show up at a hosptial you will get treated. If you live in one province and are on the med plan you are covered all over Canada. If you don't have coverage because you are from another country you pay. Yes our wait lists are long but if you urgently need care you get it, you just get bumped up the list, and if it is an emergency you go to the top of the list. Yes you may have to travel distances to cities to get care but that is where the hospitals are, also out towns are far apart so you may have to travel some distance. We do have private MRI clinics that if you want to pay for you can get in in a few days.There also is some private medical clinics that you can pay for and not wait. We all pay a small amount for the covergae each month, but it is based on your wages, if you can't pay the goverment will pay. Same goes for medications we pay to a certain amount based on wages after that the goverment pays. Yes we do have a shortage of Dr. but we are never told where we can go to see a Dr. or who. Because of the shortages specilist waits can be long.

Got to go Mothergoose

[Krisi]

That might be one case. The circumstances are often different depending on fractures and depending on if you want the best orthopedic surgeon operating on you or they doctor that is on call. Not saying that the on call guys aren't good you just don't get to choose, but I am so glad I wasn't operated on by the ones here at the University hospital near me. Instead I got to choose my orthopedic and he was much more knowledgeable at fixing my leg than they would have been because of the rare tear and fracture that I had. If the fracture to your sister was severe and required emergency surgery it is different than someone who has a case where it isn't an emergency. Also, you didn't mention what day or time either of them happened in, because that in and of itself can make a difference.

Oh and not all hospitals will take your house. If you can't pay, a lot of them will just write it off at the end of the year in the US or will do a payment plan. If you talk to them as soon as you get your bill a lot of hospitals will accommodate. I have seen it happen even if you are middle class. Even if medical bills is statistically the number one reason it doesn't mean the data is correct. I believe miss handling of money is often the cause. There are too many times I see people that claim they can't afford insurance in brand new vehicles and fancy houses. People don't take responsibilities for their actions anymore. I am sure there are many people that probably can't afford it though. I am just saying some people put their priorities elsewhere and are in debt long before the medical problem that throws them overboard. If we went to the so called system up there then they would be paying more for their additional taxes than they would be paying for private insurance. Just remember just because a study or paper is written it doesn't mean they took accurate data. They might not even be looking at other causes. I know because the field of science and statistics are one of my areas of expertise.

Oh, it was also obvious that you really didn't want any answers you just wanted to vent. Well go ahead and do it. All I have to say is even if a president is voted in that wants to change it, they still have to get it through Congress. And there is no way that Congress would be willing themselves to get rid of their coverage. Even if they had a majority it would more than likely get filibustered in the Senate, which requires a 3/5 vote to overturn the indefinite rant and start a vote.

[Krisi]

I know all systems have their benefits and problems and the US system needs some change. It looks like all systems need some change. Here is an article on the myths of single payer systems throughout the world my the NCPA. It might be interesting to some of you. "20 Myths About Single-Payer Health Insurance" (http://www.debate-central.org/topics/2002/book2.pdf)

[bf17]

hi cindylu (and fellow canadians!),

i'm so curious to hear how your appt went with your new uro. i don't feel like my uro is super knowledgable about IC and would love to see a real specialist (if any are taking new clients). are you happy with your new uro and are they accepting new clients? and where are they? thanks!

[alleytally]

hey i have my first appointment with Dr Sender Herschcorn (sp?) in a few weeks and I do not know what to expect...any good thoughts or bad thoughts on him? How does he run his office? (should i definately have something ready that i normally would not do for another doctor?)

i actually just moved to the city and i have never ever been to sunnybrook...is it hard to navigate? i get flustered easily and that can lead to a sudden flare.

any info would be helpful.

I hope everyone is doing well and is handling the heat well :)

[bluetou]

I am also Canadian!! I recently found these boards a few weeks ago, and have only started to post.
DID NOT even know this part of the network was existing!!
I agree that not all posts are read and commented on....I do see that there are TONS of views on posts but no one responds.....don't know why.
I agree that places are clicky no matter where you go....even in cyberspace.
I do believe that it has lots to due with the new-ness of it all...being new to the boards, etc....getting to blend in is always a work in progress no matter where you go.
Does not matter to me....I am finding lots of answers to things on the boards as there is so much that has been discussed. IT has been of HUGE benifit!

I am also going alterntaive medicine with my IC and it seems that this is not the route of many. So I do find this a bit dissappointing, that there is not a lot of info on this...or enough talk about alternative ways and the successes, or struggles...etc.

Regardless this board has been very inspirational in its education of ic for me.

I hope this side of the boards become a bit more active!
That would be nice!
:)
kind regards,

[Poppystock]

Hi guys,

Have been reading the Canadian boards eagerly and wanted to introduce myself.

I'm a 33 year old old TV scriptwriter, wife and mother of a beautiful 2 year old, recently diagnosed with IC. I suffer mostly from very intense pelvic pain.

I am wondering also about IC specialists in Toronto, as my urologist is 'unfamilar' with IC (though he put me on Elmiron.)

Any suggestions BEYOND appreciated. I am so stressed to find Dr. Carr is not taking new patients.

All the best, and hello!
Emily

[bluetou]

HI there Emily WELCOME. Sorry I am a bit late in my Canadian hello, I am from Nova Scotia. I am not sure if you found anyone for PFT, but I do know of an amazing lady who lives in the Ottawa area, her name is CAROLINE ALLEN.

http://www.pelvicsupport.com/

THE website is above. I have given her name to a few ladies, and some I remain very close to through private personal emails, and she has helped them tremendously.

I do hope all is well, and hope you are doing well.

Peace
Blue
:pray:


Hi guys,

Have been reading the Canadian boards eagerly and wanted to introduce myself.

I'm a 33 year old old TV scriptwriter, wife and mother of a beautiful 2 year old, recently diagnosed with IC. I suffer mostly from very intense pelvic pain.

I am wondering also about IC specialists in Toronto, as my urologist is 'unfamilar' with IC (though he put me on Elmiron.)

Any suggestions BEYOND appreciated. I am so stressed to find Dr. Carr is not taking new patients.

All the best, and hello!
Emily

[kjc]

I have recently relocated to PEI from Halifax. My GP here believes that I have IC and has referred my to the island urologist. My appt is next JUNE! He knows that I am in pain and waiting this long is really a challenge. So, his office is calling all urologists in Nova Scotia and New Brunswick - trying to get me am earlier appt. They checked in yesterday and said that I might be able to get to one in Fredericton is about 3 months (sigh). In the interim, he is treating me with Elmiron and Atarax (he also gave me Elavil but I have not yet started it). Anyone know of urologists in eastern Canada that are seeing new patients? Any tips would be greatly appreciated.

[bluetou]

HI there, i am sorry for your pain, and then the agony on top of it all, having to wait to get in to see a urologist. ((HUGS))
I saw Dr. Norman in Halifax, my appointment date was originally going to take me 3 months...but I called the office directly and explained my situation and the pain I was in, and I was able to get in within two weeks (I was placed on a cancellation list). Maybe you could try this route.

((HUGS))
Peace
Blue
:pray:


I have recently relocated to PEI from Halifax. My GP here believes that I have IC and has referred my to the island urologist. My appt is next JUNE! He knows that I am in pain and waiting this long is really a challenge. So, his office is calling all urologists in Nova Scotia and New Brunswick - trying to get me am earlier appt. They checked in yesterday and said that I might be able to get to one in Fredericton is about 3 months (sigh). In the interim, he is treating me with Elmiron and Atarax (he also gave me Elavil but I have not yet started it). Anyone know of urologists in eastern Canada that are seeing new patients? Any tips would be greatly appreciated.

[kjc]

Thanks Blue...I'll try anything!

[bluetou]

Good Luck, I hope you can get in sooner. ((HUGS))
Peace
Blue
:pray:


Thanks Blue...I'll try anything!