I just received a related comment and Deanna says:
Hey Ali,
I just found out my veins need a plumber. So I'm trying to get the funds together to go to a specialist in California.
I've tried stem cell treatment in Israel in 2009 and that worked amazingly (I didn't need my cane for about 7 months and I no longer needed to get 'stoned' to relieve my excruciating pain!)
But I've slipped drastically since then and I'm desperate for any help!
Since I have PPMS, there's no med out there for me.
Why doesn't the medical system say 'gee this method isn't yet approved as a MS treatment BUT your veins shouldn't be clogged in any event'?
So hopefully in a couple months I'll be on my way!
I am scared yet excited and ANGRY to think that my life may have been unnecessarily full of torture.
What are your thoughts on this procedure?
Take care,
Deanna
Let me begin by saying that you're a very brave woman and I applaud your efforts to manage your M.S. by any means. I am 100% on-board the "if it's broken, fix it!" band wagon with you. Even if CCSVI testing and Liberation surgery is not approved for use specifically as an M.S. treatment, if your veins are f*ucked up, they should be fixed. Is this not why we, as Canadians, pay huge taxes towards health care?
This story will probably make you angry. My Grandmother had a heart attack back in the day and was in ICU at the hospital. It was discovered that her veins (jugular et al.) were not draining properly and they did a Venoplasty for her immediately. Just like that, totally covered by health care. Exactly the procedure being performed out-of-country for tens of thousands of dollars and all being paid for out of pocket by desperate M.S. patients like you and me.
I have no answers, just conspiracy theories. I do however, have hope. Call me naive but, I still think that basic decency and honesty will always prevail. After posting on this site about Merck and how they are paying off neurologists to prescribe Rebif even though it may not be their best option, I was FURIOUS. Not to mention extremely sick to my stomach and jaded. But, I can't help it; I think bad karma on that big of a scale is going to come around in a major way and bite every single one of them involved.
It also made me realize that sometimes you just need to get on with it, take the bull by the horns and do your own thing. I've heard this and that from doctors, radiologists, counsellors etc. regarding Liberation surgery but, you know what, it's our decision to make. Even if the results help you for a short time, it's a bit of much-needed relief. Even if the surgery gives you no relief, at least you tried everything you could.
So Deanna, that's what I think. I want Liberation surgery too and once I get the $13 500 saved up, there is not a person in the world that can stop me.
If it makes you feel a bit better, the M.S. community is not taking the situation lying down. My friend's father was interviewed by the Globe & Mail recently based on letters that he wrote to the M.S. Society of Canada. He asks why the Liberation procedure has not been made available in Canada; the country with the largest M.S. population in the world. See below for the article:
http://www.theglobeandmail.com/life/health/new-health/health-news/multiple-sclerosis-patients-navigate-the-minefield-of-for-profit-care/article2015967/
I know that it's so incredibly frustrating to have that 'possible cure/relief' carrot dangled in front of your nose. I can only hope that, while I'm saving my pennies for Liberation, Canada steps up and decides to treat its suffering citizens at home where we belong.
Deanna, please keep me posted on your progress and I wish you all the luck in the world! Ali
4 comments:
I've been reading your blog for awhile now, ever since my daughter recommended it, and I want to tell you how much I enjoy it. I laugh. I cry. I'm cheered by the fact that someone else "gets it" and I'm not alone. MS can be a very isolating disease, and it helps to hear about someone else's experiences.
I live in Alberta, and am not sure how I feel about liberation treatment for me (my MS seems to be responding very well to drug therapy - Copaxone, not Rebif) but I definitely think it should be available in Canada. MS or not, it can't be good to be walking around with blocked veins!
I've been taking a wait and see approach and then this week, I received a letter and survey from Alberta Health and Wellness offering me "an invitation to participate in an important survey, "The Alberta Multiple Sclerosis Survey." This is how my provincial government is spending my health dollars. The survey is supposed to "evaluate and improve the way multiple sclerosis and other diseases are monitored in the province," but it's vague and not particularly well designed and isn't going to provide them with any useful information as far as I can see. This is the Alberta Government's response to the call for CCSVI treatment...makes me angry, angry, angry.
Anyway, forgive my little rant, and keep up the good work.
Thank you Lesley, my intent with this blog was to reach out to other MS patients and, it's working! I am the only one in my family with MS and when I found out, you're right, I did feel so isolated. Writing and hearing from people like you helps SO much and I thank you for reading and supporting me.
I am waiting and seeing for now on the Liberation too but, it's likely I'll have it done within the next couple of years. I want to see more info. on long-term benefits...
Wow, all that money on a poorly-designed questionnaire? Sometimes government's attempt to placate riled-up citizens really ticks me off! Sounds like most of us are feeling some degree of helplessness when it comes to CCSVI.
I guess we can all just do our own parts and continue getting the word out there. Hopefully our country will get the message really, really soon. :)
Keep well, Ali.
I just stumbled on your blog and enjoy it very much. I was recently diagnosed in February. I live in the US (Texas) and I have never even heard of Liberation treatment until your blog. Sounds interesting and I am looking forward to learning more about it.
Hi Jamie, I'm sorry about your diagnosis - it's difficult to wrap your head around I know. Did you read the blog post "You're So Vein"? It goes into what Liberation is a bit further. My friend's father is having Liberation in Washington on June 30th so, I look forward to reporting to everyone his results...stay tuned. Ali.
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