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Canadians, please read.

Postby KyliesSis » Mon Mar 24, 2008 9:31 am

Hello,

My sister was diagnosed with SM in February, and she saw two neurosurgeons, and one neurologist since that day.

When we saw the neurologist in Windsor, she told us that she had seen cases of SM before, and that there was nothing to worry about.

When we saw the neurosurgeon in London, she told us that she had seen plenty of cases with SM, we would monitor her, and then depending on how her symptoms went, we would go from there. She told us that she would see her in six months, and another MRI done in a year.

When we saw the neurosurgeon in Toronto, he told us that the kid is in "perfectly good shape" and "excellent condition". He told us that he would see her in two years, or when she starts displaying symptoms. When asked if he could define symptoms, he said when she is no longer able to walk.

So, just to make sure that this was the case, we decided to go see Dr. Frim in Chicago. When we saw him, he diagnosed her with Spina Bifida, Tethered Cord Syndrome, as well as what she already had SM, Scoliosis and Kyphosis. He told us that a surgery would be needed in the next couple of months, before the condition worsens.

The problem is that we want Dr. Frim to do the surgery. No one here bothered to look into it, and see what was the cause of her SM. When we asked, they said that it was impossible to know, and that they'd seen HUNDREDS of cases where the kids just have a normal life.

Spinal surgery costs between $50,000 - 60,000, and we don't have that kind of money. I'm hoping that I could find someone who has already gone through this. I will hopefully be applying for Out of Country Services, but I've heard that most people get declined. She doesn't have a long time, and she needs to have this done now. Any advice?


Thanks for listening,
Ky's Sister.
Proud Sister of 6 year old Kylie
SM C3-C4 and T10-T11
Tethered Cord Syndrome
Spina Bifida
Scoliosis
Kyphosis
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Postby SMLady » Mon Mar 24, 2008 10:59 am

Wow. I can't offer any insight or help, but I just wanted to let you know that you and your family are in my prayers. Take care.
Proud Mom of One Son
Idiopathic SM T1 - T9, DDD, Scoliosis, Pinched Nerves, Bulging Discs, Spondylosis, Stenosis
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Postby cash71 » Mon Mar 24, 2008 11:03 am

Hi KyliesSis,

I know you pm'd me but I thought I would answer you here in case this is helpful to others. *Warning*......long post ahead!!!

Unfortunately, I have "met" a lot of people online that all need surgery in the states and no one has ever been approved. Several people have gone ahead and paid for the surgery in the states and are now suing their provincial gov't but to my knowledge no one has been successful yet.

My advice to you would be to try and find someone up here to do her tethered cord surgery for you. I don't think this is impossible b/c it seems easier to convince NS of the need with pediatric patients. Have you contacted Dr. Steinbok at UBC? I have conversed with him thru email and he seems approachable. He is doing a study right now on tethered cord. I have the link to the study on my blog.

I will tell you the steps that I am taking but I am ultimately hoping that I can just find someone up here. I also travelled to the states last summer after being told by my local ns that all I had was a syrinx and it was no big deal and I should come back when I couldnt' walk. So I went to TCI were I was dx with OTC, chiari zero, cranial settling, POTS and ?EDS. Dr. B even advised me to try and find a canadian NS to do the first surgery I need (sectioning of the filum terminale) to try and save me some money. That is why I am his biggest fan, if it was all about the money he wouldn't say that. He said he would be happy to talk to any ns up here about his findings and how they do the surgery. The second surgery I need is a fusion and that will have to be done at TCI but the first I could get done locally.

So I have been trying to get all the things I was diagnosed with down there re-diagnosed up here. I have seen a million specialists and had a million tests in the last year. The last thing I am waiting for is my urodynamic testing to help prove that I have occult tethered cord. Once I have all my testing I am going to approach all the canadian ns that have any kind of expertise or interest in cm or TC and explain my situtation and what I want done.

If they all refuse me then at least I have proof that I cannot have the surgery done in my own country. I think you need to do this to have any hope of getting the gov't to pay. You first need to prove it can't be done up here.

After I have been refused by everyone then I can approach my minister of health and local MP and explain my situation. I also then plan to try and get media attention and try and embarass the gov't into it.

So this is the plan, it has taken a year so far and I'm not done yet. From what others have said it will be almost impossible but someone has to be first and I don't have any other choice but to attempt it.

A friend of mine in Saskatchewan just told me that she has found a ns that said he would do her surgery for her occult tethered cord. She is still sceptical that it will actually happen but if it's true this will be the first doc that I know of that has done the surgery on adults. I will be heading east if it turns out to be true.

I hope this helps. I think you have to investigate all possiblities in Canada to have any hope of getting the surgery covered in the states. I would try Dr. Steinbok first, he would be your best bet. I have his email if you need it.

Let me know if I can help further,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby rainbowz » Wed Mar 26, 2008 1:04 pm

Caroline is right. Your best bet is to have the surgery done here in Canada. Just make sure you fins a NS who is very experienced with tethered cord. Do your research first. If this is straight forward tethered cord and not Occult tethered cord I see no problem in finding an NS to do the surgery. And there are some in Canada with plenty of experience especially in the pediatric area as Caroline said. I wish you the best of luck and please let us know what happens.
Thoracic SM T3-T8
Herniated discs T1-T2 and T9-T10
10 degree Scoliosis T4-T9
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Postby rose » Wed Mar 26, 2008 3:25 pm

hi
i amsorry to hear that you have been having problems
i am canadian and live in the us
keep after the doctors because they can not deny you care
it may take awhile but press on
also i have been having issues for 2 years and not much luck in the us
ans i dont know if it would be any better at home
but i hope you do not have to pay for the surguries
that is what you pay taxes for
maybe you should call your mla or premiere
and see if they can talk to the doctor
best wishes ra
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Postby rose » Wed Mar 26, 2008 3:30 pm

hi once again
have you taken the us doctors notes etc and given them to a local ns
maybe that is what is needed to get things moving
i know how frusterating canadian medical system can be
but there is always another way to get what you want
its just a matter of finding it
i dont know if this will help or not
but im praying for you
and keeping you in my thoughts
ra
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Postby cash71 » Wed Mar 26, 2008 4:58 pm

Rose,

it's just not that simple. I have spoken to countless Canadians that have tried for YEARS to get covered to go to the states for surgery. No one has been successful (to my knowledge) One woman in Alberta had private meeting with her minister of health and spoke to 5 different MLA's to try and get care for her daughter and still they refused. The best they would give her was a second opinion in Britain. And unfortunately Britain has as many experts as Canada. last I heard this family was planning to sell their house to pay for the surgery and sue the Alberta gov't after the fact.

I have told every doctor up here about going to TCI and given them all my 17 page consult letter from there. They scoff at TCI, say they are experimental and don't recognize their diagnoses. Chiari zero and occult tethered cord (both of which I have) are not recognized by ANY ns in Canada. They CAN and DO deny you care that you need in Canada. They do this by denying anything is wrong with you. The only thing my Canadian NS have diagnosed me with is a syrinx which is too small to cause any symptoms. The rest of my symptoms it is implied are in my head or are being grossly exaggerated.

Trust me I have researched long and hard about how to make this happen for myself and fellow sufferers. There are no easy answers, no one is going to hand it to us. It is going to be a serious struggle but then chiari and sm isn't for wimps! Most days I feel up to the challenge.

8) Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby rose » Wed Mar 26, 2008 5:34 pm

dear caroline
i am sorry to hear that canadians are having a hard time getting necessary care
i certainly did not mean to offend anyone
i was just trying to be supportive
so please excuse me if i have offended you
it certainly was not my intent
respectfully,
ra
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Postby cash71 » Wed Mar 26, 2008 5:58 pm

Dear Rose,

You have not offended me in the least. I have strong feelings about this topic and want to make sure there is no elusions as to how it really is up here. Thanks to Michael Moore I think a lot of people think the Canadian system is sunshine and roses. When in reality it's like a hailstorm and stinging nettles when you have what we all have.

I myself was shocked to learn I can't get the care I need in my own country. I always thought that was my right as a Canadian....boy was I wrong. The ns up here are extremely threatened by US ns particularily TCI. I don't really fully understand why but both my ns that I mentioned TCI too literally went red in the face and started almost yelling at me how the US system was just a big money grab and that the Canadian system was the best in the world :shock:

So please I apologize if it came across that I was upset with you. I am upset with the system and I am upset that there are so many of us suffering needlessly. :(
Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby rose » Thu Mar 27, 2008 2:44 pm

dear janice
no i wasnt offended - you are very passionate and i didnt know if i stepped on a nerve- its all good 8) i can not beleive that canada is so backwardwhen it comes to ch/s
how can people be doing research and not believing that it exsists
im from pei , if we need special care we get sent somewhere
i assumed it was the same all over canada
when mom had a heart attack she was taken by ambulance to the heart hospital there
is your regular doctor a strong advocate for you
can he not find anyone willing to help???
sorry im still shock that this is the way it is
as people say- you learn something new everyday
unfortunately this one wasnt pleasant
have a good day
write again
ra
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Postby SMLady » Thu Mar 27, 2008 2:54 pm

I had no idea that it was that hard for you guys!

Yes, Michael Moore has a way of painting the picture he wants everyone to see, not a picture of what is real by any stretch of the imagination.

You guys are in my prayers. I hope everything works out for you.
Proud Mom of One Son
Idiopathic SM T1 - T9, DDD, Scoliosis, Pinched Nerves, Bulging Discs, Spondylosis, Stenosis
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Postby cash71 » Thu Mar 27, 2008 3:13 pm

Hi Rose,

I think you meant me (even though you said Janice) I think you are still mis understanding. This is the same in every province. I know people in almost every province in Canada that also have travelled to Dr. Bolognese or Dr. Oro b/c we can't get treatment in Canada. Many have tried to get funded and failed (I know of 6 or 7 people personally)

If you have something well known like heart trouble of course you can get help. My sister-in-law who has MS, for instance, would not get better care anywhere in the world I am sure.

But when you have something rare like we do that is when the problem comes in. There are NO NS in Canada that believe in chiari zero or will do surgery for occult tethered cord on adults in ANY province

The Canadian system works differently than the states b/c it's publicly funded. MSP(medical service provider) who pays the doctors has a list of allowed surgeries that doctors can perform. If the surgery you want is not on the list of course they won't do it b/c they won't be paid or legally covered to perform it. In order to have a surgery covered the physician has to go thru a process (I'm not totally sure all the steps) to have it added. I believe it involves providing sufficient scientific evidence that the procedure is safe and effective. So as you can see the NS up here will have to go to a lot of trouble to do the surgery we all need and I just don't think they are motivated to go thru all the required steps on something that will benefit so "few" people. Also the scientific evidence is still minimal I agree. But that doesn't change how much I still need the surgery.

I have a neurologist, cardiologist, urologist, pain specialist, physicatrist, neuro ophthamologist and family physician who are all great and are behind me 100% but it doesn't really matter b/c they can't do the surgery I need. The NS all stick together in this country. It's like an old boys club IMHO and they have decided that these things don't exist and it's going to be hard to change their minds.

I hope this helps you understand the current situation a bit better. It isn't a regional issue it's national.

And thanks Glenna for the prayers. I know it's not only Canada that's a tough place to get care but I honestly could have spit nails after I watched Sicko. It's just so in-accurate. We are not all getting a piece of our pie and we are not all happy to wait for our piece.

thank you both for you words of support

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby rose » Tue Apr 01, 2008 1:41 pm

dear carrolyn
hi how areyou today
i am sorry to hear that there is so many problems in canada with medical
i have never experienced it for common things but syringo and ch
are not common things
i am sorry that this going on
i did not realize that the situation was so bleak
i hope that things will work out for you and all the canadians who
are having difficulty getting the proper care
i thought canada would be better then that - it really is a shame
all the best and i will have you in my prayers
ra
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