Denied pit surgery in Canada

[cjs]

I tried to put this in the Where we're from section but the link isn't working. This is a story of a woman with cushings, who went to the States for diagnosis, denied treatment in Canada and returned to the States for surgery.

http://www.canadianconstitutionfoundation.ca/article.php/145

[mrsb91986]

THAT is a travesty! There is absolutely NO excuse for this kind of treatment! Unfortunately in a few years we most likely will be in the same boat with this Wonderful and "necessary" Healthcare reform bill. Does the Ins. industry need an over-haul? Absolutely, but this law was NOT the answer.

 

 

Thank you for sharing this!

 

Hugs, Mar

[MCF]

Mar, it hasn't been my observation that Canadians are having a harder time than U.S. Cushing's patients are in being believed or getting diagnosed.

 

It's extremely common to wait for months to see a new endo in the U.S.

 

My vision is severely affected and I've been increasingly debilitated since last August and can't find anyone to believe me and act on obvious infections in my sinuses and jaw after botched dental surgery.

 

On Monday, my vision didn't respond at all to 30% changes in lens correction; freaked out the eye doctor who can't believe how negligent all the other docs have been so far.

[radtravler]

I definitely think people in Canada and other countries have a harder time. This woman had a diagnosed Pit tumor and they didn't believe her.

 

I wasn't diagnosed for years, but when I was and wasn't satisfied with the care I was getting, I researched and went to Dr L. That won't happen with the Healthcare reform - if other countries are the example.

we went 2500 miles to Dr L and to have 12 surgeries. I am thankful that I could do that.

[MCF]

Of course it will happen with health care reform just the way it does now. Folks with money enough will work outside the system the way we do now. They way they do in Great Britain and the way the Canadian did.

 

Many U.S. folks on these boards with well documented tumors have been denied diagnosis, even with florid symptoms.

[Juneau]

My heart goes out to that poor woman. However, my experience as a Canadian has been quite the opposite. Perhaps I was just lucky. Through the years, all of the doctors I consulted (with one unfortunate exception) took my complaints seriously. My Cushings went undiagnosed for many years, but the individual symptoms that were later attributed to it were treated promptly (ie. diabetes, high blood pressure, high cholesterol). Once Cushings was suspected, the MANY tests that were required to confirm the diagnosis occurred in a timely manner. From suspicion to diagnosis took a little over 6 months. From diagnosis to pit surgery was another 3 months. It took two years from the failed pit surgery to BLA, but that included the time required to verify that BLA was the appropriate treatment. Once that decision was made, the wait was four months.

 

During a portion of this time, my husband was unemployed and we had no private health insurance. Through all of this, I have yet to see a single medical bill. Without Canadian Medicare, Cushings would have bankrupted us! Unfortunately, drug coverage is another matter, and we still wait to determine whether my GH will be covered. However, our private drug coverage has covered all other Cushings-related prescriptions.

 

Just lucky, I guess...

[radtravler]

I am afraid of what will happen with the Reform - I ,too, think we need change - but I am not sure this is it.

I guess we'll see.

[MCF]

My heart goes out to that poor woman. However, my experience as a Canadian has been quite the opposite. Perhaps I was just lucky. Through the years, all of the doctors I consulted (with one unfortunate exception) took my complaints seriously. My Cushings went undiagnosed for many years, but the individual symptoms that were later attributed to it were treated promptly (ie. diabetes, high blood pressure, high cholesterol). Once Cushings was suspected, the MANY tests that were required to confirm the diagnosis occurred in a timely manner. From suspicion to diagnosis took a little over 6 months. From diagnosis to pit surgery was another 3 months. It took two years from the failed pit surgery to BLA, but that included the time required to verify that BLA was the appropriate treatment. Once that decision was made, the wait was four months.

 

During a portion of this time, my husband was unemployed and we had no private health insurance. Through all of this, I have yet to see a single medical bill. Without Canadian Medicare, Cushings would have bankrupted us! Unfortunately, drug coverage is another matter, and we still wait to determine whether my GH will be covered. However, our private drug coverage has covered all other Cushings-related prescriptions.

 

Just lucky, I guess...

 

Everywhere online that I've been in discussion groups, Canadians and Brits have been very proud and grateful for their medical systems and shocked that folks here go without any insured care.

 

Folks in both systems are being screwed medically. But in the U.S. we pay more for the privilege.

[Kathryn G]

There are some real advantages to our healthcare in Canada. We don't pay a dime ( unless you have extended health via work) and everyone is entitled to medical. We don't have people being denied seeing a doctor, rich or poor.

It isn't perfect though. We do have very long waits if your condition is not deemed an emergency. If you have a heart attack, stroke, cancer, ect. you will be seen right away.

This lady, Shona Holmes, situation is slightly different than you would think. I have talked with her before. She did have high cortisol but it was coming from her adrenal glands from what I recall and she has had a BLA.

I *think* more the problem isn't with the healthcare system, but very conservative doctors. In the States, you have a choice and you will still have the choice. In Canada, we are very limited and most endos seem very conservative. You have the same issues with some endos being very conservative in the States. We also go by old values often and that doesn't help. You won't have that issue. We are just slightly backwards and not up on the latest and greatest. We don't have mass. spec. urine tests. We didn't have saliva testing until very recently.

I have a "yearly" MRI booked for July 2011. It will be two years between my MRIs for my yearly MRI. That is were I notice a huge backlog. Just waiting for a scan.

I still do like our healthcare system but it isn't perfect.

Kate

[cjs]

I have a diagnosed pit tumour showing on MRI, elevalted cortisol in saliva, urine and blood. Hormones completely out of whack and here I sit waiting for the endo and neurosurgeon to decide if I SHOULD have surgery. Pisses me off that somebody has control of my life. It's like a light at the end of the tunnel being shut off by the medical association.

Jill

[MCF]

I have a diagnosed pit tumour showing on MRI, elevalted cortisol in saliva, urine and blood. Hormones completely out of whack and here I sit waiting for the endo and neurosurgeon to decide if I SHOULD have surgery. Pisses me off that somebody has control of my life. It's like a light at the end of the tunnel being shut off by the medical association.

Jill

 

It stinks no matter where it happens.

 

That's for sure.

[Kathryn G]

I hear ya. I was the same, Jill. Would this happen to us in the States? Most likely not because we would have travelled to a specialist trained in Cushing's. I don't think it is our healthcare system though. I just think there are very few really good Cushing's doctors or pituitary centers. Some doctors claim to be a "cushing's specialist." It happens in the States too but people in the States have a choice ( if their coverage allows them).

Hang in there, Jill. Something has to give soon.

Kate G

[Juneau]

There does seem to be a "luck of the draw" factor going on that doesn't seem fair. I was lucky. I didn't go looking for a Cushings diagnosis, the diagnosis found me! I had many "red herrings" in my medical file that made all the weird symptoms make sense...sort of. Shortly after I first saw a doctor about what would later be identified as Cushings, I had a serious accident, which led to a spinal fusion and some permanent nerve damage. Thus, the muscle wasting in my legs was attributed to the spinal injury. The diabetes was attributed to surgical trauma. Osteoporosis led to stress fractures, which were attributed to the strange gait that developed thanks to the nerve damage. No one ever wondered why a young, healthy woman should develop osteoporosis. I never gained much weight (only 25 pounds) and since I was very slim to begin with, I was never considered overweight. The weight gain was attributed to a less-active lifestyle. I hated the moon face, round belly, hair loss, etc, but just considered it an unfortunate side-effect of aging. I kept my mental symptoms to myself. Apparently some family members wondered about the changes, but they kept their mouths shut. The list goes on...

 

Cushings was discovered more or less by accident. A young doctor who was filling in for my regular GP started to ask a lot of questions about my medical history, the last of which was, "Have you ever been tested for Cushings?" I had never heard of it. Apparently, she recognized the round face and strange body proportions. She passed her concerns on to my regular GP, who did a preliminary cortisol test. I had already been seeing an endocrinologist for diabetes and our relationship was good. She never questioned the pituitary surgery or BLA. In fact, it was she who explained the procedures to me. Both surgeons were experienced in their fields, and very good at explaining what to expect.

 

One year post-BLA, I must admit that I am not as healthy as I had hoped to be. I guess the many years of cortisol damage have taken their toll. But, I can not blame the Canadian health care system or anyone working in it for my difficulties. Everyone did the best they could. I really feel badly for those who do not receive the treatment they need in a timely manner. Being sick stinks. Having to fight for needed treatment must make it so much worse!

 

Hang in there, everyone.

[cjs]

Kate,

 

How did you get in contact with Shona? I'm being held in limbo by my endo/neurosurgeon and I want to look into other options. Maybe kick some Endo ass if need be.

 

Thanks

Jill