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Canadians

inapeoplehouse
0 Recommendations

Hi there,

I have posted before, but it has been some time.

I would be really interested in connecting with fellow Canadians with VHL. I find many of our issues can often be different, due to the insurance not being so much of an issue... Lucky for us. I find that alot of conversation on VHL specific lines are really about the financial end of things, and would love to spend more time talking about going through it all in Canada.

As for myself, I am a 29 year old mother of 3 daughters, all of them also positive. My mother passed 4 years ago at 46 as a result of VHL related complications. My grandma was 49 when she passed and my uncle was my age.

After victimising myself for almost 2 years after hearing I was positive (I had a false negative dna in 97) I decided to spin my attitiude and have become more or a leader. I have two newspaper article on the vhl site, in which is was able to bring awareness to my province, and I began a small non profit organization for young adults with cancer. I find things easier to deal with now, though lately have gotten a little down in the dumps again... seems to be common.

Anyways, would love to touch base with more of you.

Julie
jewelz79@telus.net

Explore topics in this discussion:

Cancer Surgery Brain tumors Back pain Pain Mental health Stereotactic radiosurgery (SRS) Radio frequency ablation (RFA)

21 replies

graciewt

Hi! I share your feelings, since I'm Canadian too. I have little use of my hands, so have difficulty typing. Please find my other comments & my blog.

joyceg98

I would love to hear more about the experiences of our friends in Canada. At least one-third of all the people here are actually from outside the United States, where there is health care for all. So your experience is actually more frequent than the US experience. Don't be shy! Speak up!

As the US talks about how to implement wider access to health care services, we are often told how awful it is to have "socialized" medicine. One American man told me today that "people are dying in the UK waiting for brain surgery." (??) So please tell us how it is really. We hear the negative side -- what's the positive side? How well do you feel you are being helped in managing VHL in Canada, UK, and other countries?

Thank you,
Joyce

Thanks,
Joyce

JenM

I too am a Canadian with VHL. My mother, brother and daughter all have VHL as well.

We've had no real problems with health care issues. My brother has had two brain surgeries, I have had one, my mother has had her pancreas removed as well as a tumor in her carotid artery. We all go for yearly scans and tests. I am scanned every 6 months to check my pancreas as I have cysts that need to be closely watched. I've often wondered how costly it would be if we did not have health care.

My family doctor has done a great job organizing and managing our family's VHL. The only problem we've ever really experienced is waiting for surgery and getting bumped to a later date. We've always received excellent care.

graciewt

My experiences have been similar to JenM. Serious conditions are attended to well for the most part - I changed specialists in order to find somebody who would give me a chance, since the last tumor was large and the Dr I had been seeing was reluctant to operate because he thought the result would be bad. I had to go to a different city, and ended up in hospital - unable to walk or urinate. My case was discussed for almost 2 weeks and finally one brave surgeon fit me into his schedule, because "if we don't do something, she'll just end up a quadraplegic anyway." The tumor was removed successfully from my spine [c2 - c7] July 19 2007. I went to a REHAB hospital [but not until Aug 16 as there was no room until then] and came home Sept 20. I live alone. Life is a constant challenge and struggle. I have government home care everyday. I'm just thankful not to be a quad.
I almost didn't get admitted to the first hospital because it was full - they would have sent me home from the ER with visits from a nurse and home care. That very evening though, a discharge happened and they were able to accommodate me. When I got to the ward, I discovered patients who didn't need to be there, but they refused to go home. I can't imagine preferring to live in any hospital, but there are people who are less independant than I am, and more self-absorbed, not caring about other citizens who need service more than they do. I would say THAT is the major problem with our system.

Crazydog

Hi All

I am not Canadian (have relatives over there somewhere) but here in the UK from my family experiences only, we have excellent health care and any problem, VHL related or not is investigated. We have access to a great genetic nurse, Pete, who is always there for any problem and when an operation is required we do not have to wait.
Although I have been down quite a bit recently speaking to people on this site has made me realise how lucky my son and I are regarding our health care. we may be used as guinea pigs at times but it is worth it (only in relation to students etc).
I am not saying our NHS is perfect,far from it, mental health care is just about non existent, but we have had the best they have in the area I live in for our VHL.
It is wrong to 'socialise' medicine in any country. We all deserve, we all contribute what we can and we are all human beings. My thoughts do go out to those that cannot receive the care they need.
Vicky (crazydoglady)

semperfi16

wow i envy all you canadians im a vet and still get sh-ty health care , but even if i wasn't a vet i think the u.s should treat its people better . i find in alot of cases its cheaper to die and that makes me sad, knowing we live in one of the greatest countries in the world and still get treated as $ symbols

ReneeMichelle

I am Canadian, and I am GLAD to have socialized medicine. Has anyone seen "Sicko", that documentary by Michael Moore? I wondered if he exaggerated the problems with the US medical system?? Because I was astounded by that movie. I would never complain about our health care system again. Sure, there are problems, but most of the time I get very good care here in Canada. My only complaint is that it's hard to find doctors familiar with VHL, but I am darn sure that would be the case in almost any small city like mine. I often have to travel for medical care. But I choose to live in this isolated area, and our gov't pays a "Northern Travel Grant" to anyone who has to travel for medical care. Canadians should watch Sicko. I think everyone here would be happier with what we have!

There are countries who apparently have an even better socialized system than Canada. Hopefully we can look to them for guidance. As for Americans, you really should DEMAND socialized medicine. Think about it, you have other services that are socialized (firefighters, police, basic education)... aren't you happy with them? Do you think they would work better if privatized? Because I think it would just create more problems!

Anyway, I get the best of both worlds. My regular medical care is great here at home, plus I get to go to the NIH to see the experts there! Just wondering, would the NIH be considered socialized medicine?? Or at least be a similar example?

Renee in Canada (and proud to be here!)

joyceg98

I have had the privilege of seeing VHL through the eyes of many medical systems in the world. So far, the model I think would work best in the U.S. are the ones in Australia and New Zealand. They seem to have a very good quality of care, a "safety net" of health care for all in their public systems, and the option of private insurance to supplement for the people who would like a hospital that looks like the Four Seasons Hotel.

I was once on a trip to Australia when I got a urinary tract infection (one of the hazards of travel). My friend took me to her local clinic, where I was seen by a very nice young doctor. He prescribed antibiotics and took some urine to culture. He asked about my travel plans (returning to the states in 2 days). Since we didn't have time to get the culture back from the lab before I left, he asked if there were a fax number I could provide so he could send me the lab results? In case he had given me the wrong antibiotic, he wanted to make sure my doctor had the information needed to change the prescription.

When I got home I received his fax, he assured me that I was on the right antibiotic, and I carried on taking the pills and the episode ended happily. Total cost for clinic visit, lab test, and fax: $25 Australian.

My friends with VHL tell me that the doctors will do brain surgery on Saturday so that you can be back at work by Wednesday. They are respectful of your time and work as well.

Would any folks from Down Under like to comment on their system?

inapeoplehouse

Thats insane! Wow!

I am very lucky where I am.. Mind you, it helped that Mom had VHL. So I used her Dr's to get referals to my current team. I have the head of Urology at UBC, and the head of Neurology as well... Between the two of them, they handle all my care.

For example... When I was having back pain and went for an Xray and they saw my kidney tumour scan, I called my neurosueron. Since he is the highest in pecking order in Vancouver, he ordered the CT so it would be expedited, even though it was not his "area". He personally called me with the results and was amazingly kind about it all. He then reffered me to my Urologist.

I was in a car accident in June in which I wrecked my bladder. My VHL Urologist has stayed on to of the injury, always putting me first in his schedule, despite it being a regular issue and non VHL related.

I truely am lucky.

When it comes to GP'S? Different story. Next to impossible to find a decent one that is taking patients. At this point, I fired my last GP after he medically neglected me in the hospital for 5 days. This Dr. outright DENIED that I had RCC or that cancer was an issue for me. He yelled at me, you name it. I am not a difficult patient, but I do know more about my own health than any GP.

It is frustrating.

I do find it is very difficult to find anyone with VHL knowledge. At one point, interviewing GPs, I asked a Dr if he knew VonHippel Lindau, to which he replied.. "Was that your last Dr.?"

I often wish that I could be involved with the things going on at Mayo and NIH, feeling that Canada has been left out on alot of those fronts, but I never take my care for granted.

specialized

Hey there,

I`m Canadian and between my two sisters and myself we pretty much have the VHL thing covered. Which is definitely not a great thing, but it could always be worse.

I feel that it is a great thing that you have done by redirecting you attitude to helping others.

After recently finding out that there is a very good chance for my older sister having to have another surgery, I`ve decided that maybe ignorance isn`t bliss. Not really sure where I`ll go with it but I figured joining this site is a start.

I`ve never had a Dr. problem as you`ve had but after having recently read about the possible VHL Hatfield/McCoy feud connection I know what I would use for an excuse after punching them,,, I would never do that but it makes me laugh thinking of their response to "Sorry the VHL made me do it." :)

I`ve never known anyone outside of family members with VHL so If you feel like chatting I would definitely be interested.

scott

inapeoplehouse

I guess we are almost lucky to have family who are already involved in the whole VHL thing... it makes the referals and the "dedicated" medical team thing, flow a bit easier...

I suppose in my case, having to have an emergency craniotomy, made it hard to stick me on a referal list and ignore me too! :o)

I do see issues in our systme in other ways... Apparetly I have a Vascular issue in my legs ( I swear it is VHL related but no one has said anything) and I am on a 3 year wait list to have a specialized ultrasound done. That being said, I could pay out of pocket and have it done much quicker, so I guess, not that different than the US in that means, We are seeing more and more private clinics and hospitals opening...

I suppose there are only two things that VHL has brought me, that I am actually happy about...

1) Is a change in who I am, what I stand for and what I do with my time... While I am not "terminal", I have a much different outlook on my life now that I am 2 major surgeries down, with more in the future. It has enlightened me in so many ways.

2) The way that they keep me scanned, I think I would be at an advantage if any other health issue should creep up... I am alot more atued to my body and how I feel and strange things, and when I say something is wrong, Dr's jump... An example, I was in a car accident in June and bruised my bladder... Since then I have had constant pain and infection in the bladder and kidney area.. because they want to rule out VHL, they are overly precautious, so I am in for testing and diagnosis MUCH sooner that if I were an aveage joe.

Anyways, I sent ya a message... It is deffinately something to be able to talk to others outside your own VHL circle, and yes, many people try the run and hide method first... In fact, much of my family doesnt speak to me, because my syptoms and surgeries, remind them of their own risks.

It is funy how many VHL families choose to live in the dark of their far, rather than stay ahead of it... It is like some big bad dirty family secret.

Hallie-boppers

Hi - I'm "specialized's" older sister. He told me about this forum and suggested I join. I don't really know where to start - I'm not one for talking about myself! I have to admit I have never met anyone with VHL outside of my immediate family. If anyone would like to talk or ask me about some of my health experiences please feel free to contact me, I would be more than glad to "help"! I can share with you now that technology has advanced greatly and treatment of VHL is not as invasive as it once was.

In less than a 4-year period I had 4 major surgeries. I have been healthy for almost 7 years, but recently my MRI has shown new fluid around growths. I am to return for a follow-up MRI in May, if no symptoms arise in the meantime.

In response to a comment made about doctors and their lack of knowledge in regards to VHL, I guess we need to recognize and appreciate they can't be experts in everything. VHL is extremely rare. I feel it is our job (those diagonsed with VHL) to help educate them - we should not be hesitant or embarassed to share good VHL literature with our family doctor (or specialists if need be). Due to their high number of patients they often do not have the time to research it own their own. I have been fortunate to have specialists that are very familar with literature and studies on VHL - that would be the ideal situation for anyone that is diagonsed with any disease or syndrome. In the past I have shared info with my family doctor. Don't give up for those of you that are struggling to find good care!
Kim

inapeoplehouse

Perhaps I need to clarify on my posting.

I am VERY poractive with my own health, and I do inform my dr.'s. All my specialists are HIGHLY knowledgeable, however, gp's are hard to find... Unfortunately for me, and it seems to only be in the current area I live in. Dr's are impossible to find... No one is accepting patients... So finding one who is willing to not only accept me, but also learn about my illness, is more difficult. THat being said, I do not "expect" anything. I have no problem with a gp who can admit they know othing or very little. I am more than able to control my own health, luckily... I really need a sympathetic sounding board, as most of my gp's job is making referals and taking care of my "Normal" health issues.

So that is alright for me, though I shiver when I think about the may people I have spoken to that DO NOT know their own illness and they have detteriorated faster due to their medical teams lack ok knowleged. Not specifically a canada thing, but while you and I can work out butts off to inform and educate, it is just not quite fast enough to cover eneryone who is not in the strong mind frame to do so.

Yes, things have gotten much better! Treatments are faster and less invasive, we have a MUCH higher success rate, and chance of survival now.. THank the heavens, and yes, in a perfect world, we would all educate ourselves enough to be able to teach our caregivers and such, but we aren't there yet..... So it is ok to voice a bit of frustration in that area....

As a side thought, I suppose it is also ok to be a bit relieved that our illness is still small enough that this is an issue, because honestly, I would dread the day that the Dr.s are fully knowledgeable about it! :o)

Tracy-l

Hi Julie,

We are from Canada as well. I would love to chat about any VHL issues with you. So far the treatment my family has received here has been awesome. My mother in law passed away at the age of 49 due to VHL complications, about 17 years ago. My husband and 2 of my children also have it. My husband has had 5 brain tumor operations, has only 2/3 of one kidney left, has a couple spinal tumors and a very cystic pancreas. Its interesting to me to hear of the different treatments that Calgary and Winnipeg are now doing. I have no idea how to spell the treatment I want to talk about haha. But I think its RFA. I know one is when they freeze the tumors and one is a type of radiation. My husband had one of his brain tumors done about 4 years ago and so far so good. It is in a place his Doctor is very concerned about so we are glad its showing no sign of growing at this point.

I look forward to hearing from you.

Tracy

inapeoplehouse

WOW! Your husbands story humbles me and makes me feel less "Picked on" by VHL. What courage!

My mother passed at 46 and my grandma at 49, so I get that part....

Radio Frequency Ablation? I have asked about that for my current brain tumour and am being reviewed, but since it is close to a small but much deeper leision, it is looking like a no. Sure would be ice though!

Feel free to email me or better yet add me to MSN, I am really enjoying talking to more Canadians!

joyceg98

Radio Frequency Ablation (RFA) is a method used for kidney, but NOT for the brain. They stick a probe into the tumor and "cook" it to disable its growth. See http://vhl.org/rfa

In the brain, they sometimes use a procedure called Stereotactic Radiosurgery (SRS) which is sometimes called by the brand name of the machine they use (Gamma Knife, Cyberknife, etc.) but the generic term is SRS. See http://vhl.org/stereo

Best wishes,
Joyce

inapeoplehouse

I replied to this acouple days ago, but apparently it didn't take. That's right Joyce, I am sorry, I had a brain toot there!

Radioknife is Kidney probe.. DUH!

Radiosurgery is brain.. Basically a form of direct radiation from what I have been told, but as I mentioned, can be an issue in VHL due to the numerous lesions so close in proximatey.

I am sorry that I made that error.

Tracy-l

Thanks Joyce,

Now I know its called SRS haha, I have a hard time keeping everything straight!!!
My Husbands Dr. said there is a treatment in Winnipeg that is like the SRS but its a one shot deal. When my husband was in Calgary he was there for 5 weeks getting a little radiation everyday.
They dont know if he will qualify for the treatment in Winnipeg but our Dr. sent them a recommondation to check it out. Apparently it is fairly new there, in the last few years or so.
Has anyone else heard about this?? My husbands Doc is a highly respected man and keeps up with everything, and also deals with other people who have VHL. So Im very interested to learn more about it.
I could always call the Doc and he would phone me back no problem, but I think we will wait until Winnipeg contacts us because they obviously have the answers to my questions.
But Im curious if anyone elses doctors are speaking to you about this??

Tracy-l

Ok, never mind about the Winnipeg thing. Our Doctor called today and said Calgary does the same thing the machines are just a little different. He said it was like comparing LCD to Plasma. Anyhow the Doc told my husband today that anywhere in Canada would probably recommend surgery over the radiation. This particular tumor is not in a very dangerous spot. However we still have questions that will be answered first.
At this point my husband feels fine and is in no rush to do anything yet.
I like it when a doctor is in no hurry to get off the phone, they must haved talked for 15mins.

Have a good day to you all!!!

joyceg98

Be sure to read the information at http://vhl.org/stereo There are a number of variables that can influence whether SRS will be successful in your case or not.

Please go through the Questions to Ask Your Doctor with the doctor, and then decide. There is nothing inherently "good" or "bad" about SRS, but as with all technologies it has its strengths and its limitations, and it's important to know where you are on that spectrum.

Best wishes,
Joyce

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