Should we or Shouldn't we, that is the question .
Posted: Sun Nov 21, 2010 8:21 pm
The tragic death of a young Canadian in Costa Rica has raised lots of questions here and on other sites. I just wanted to put in my 2 cents worth on the question of being treated or not.
Let me say I do not have anywhere near the expertise in physiology or biology that many Members on TiMS have, I do not suffer from M.S. (I'm just an in-law) so I cannot write about how "I" feel thanks to this disease.
I do know that I know very little about MS - but that puts me in the same category as the Neurologists, so that can't be all that bad
.
But I want to make two points:
1) my wife was dx'd in 1997, up-graded to Secondary Progressive in 2007. I consider myself to have good reasoning skills, and some might say I am skeptical (though nowhere near some TiMS Members - you know who you are
). I have tried to follow the latest news on MS Research through the years that my wife has had the disease, mostly checking on the MS Society web-sites and getting messages from relatives in both the U.K. and in Australia, though again that info was coming from the respective MS Societies in those Countries.
Suddenly in November 2009 we heard the news of this Italian finding a possible connection to MS and blocked veins. I watched the broadcast again (at a later timeslot) and it made sense - "bad blood" leaving iron in the brain and causing the lesions - it certainly made more sense than the body "turning on and destroying itself".
The very next day I was on my PC hoping to find more info - silly me for thinking that the very organization who say they want to "end MS" would have the info I was looking for. That's when I began hunting for sites that could provide me with answers regarding this potential treatment which might help my wife. One of the first sites I found was "TiMS", and I have been an "avid" reader since, daily following on-going discussions re CCSVI as well as following Dr Sclafani's (ever growing) thread.
To say I've become a supporter of CCSVI would not be an understatement - yes I agree there is a lot of research needed, can we improve on the good Prof Zamboni's hypothesis so that we won't see 50% restenosis, can we improve on the stents available and inplant them successfully: can we better manage follow-up ? However as Dr Hubbard said in his recent KOMO News interview, I have "excessive hope" for this procedure. I feel now the same way I felt last November, this treatment makes sense, common sense.
Despite the many symptoms my wife suffered from, and "cog-fog" was definately up there, we talked endlessly about the treatment, each day I would up-date her on what I had found (I did omit many of the youtube videos of apparently miraculous recoveries because I did not want to give her the impression that this treatment was "curing" people).
We discussed the topic with our family doctor, semi-supportive but wanting to see results of trials, and with her neurologist, where at that meeting a time-line of 5 to 6 years before anything was going to happen and this treatment would become available !!!!! My wife did not want to wait that long, in five years she had gone from cane to walker, another 5 years to wheel-chair (or worse) ?????
We decided we didn't want to go "overseas", I think there were some posts regarding thrombosis as a result of long distance air travel, so that ruled out both Europe and India. We got her name on two Eastern US waiting lists, where both doctors were highly regarded in the TiMS circle. Regretably, one was not able to do the work because of "paperwork: problems, and the other's waiting list just kept getting longer, end of 2010, Spring 2011, mid-2011 ????
Then we found a site for Cabo San Lucas, Mexico, and I found one of the patients treated there lived close by so we were able to speak to him personally for his opinion on the Clinic etc. There was no waiting list, the Clinic's specialist was an Interventional Cardiologist who had carried out his own 10 person trial back in June 2010, and who was doing 10 to 15 treatments each week, with limited use of stents.
Cutting a long story short, my wife was treated there October 11 / 2010. We have just completed the one month follow up on CCSVI Tracking, and she is feeling better in the majority of tracked issues - fatigue, cog-fog, energy, bowel and bladder: she has not gotten any miraculous improvements, just slowly things are getting better for her which of course improves her quality of life. Balance and walking are possibly the only items of disappointment, but again as Dr Hubbard said, nerves that have been killed off by the iron deposits in the brain aren't going to come back, so maybe she won't get improved balance and maybe she'll have to keep using her walker - if the disease doesn't progress (which we won't know about for a while) then that will be fine.
So to answer the question of should we or shouldn't we, I am a definate "we should" although right now stenting should be avoided.
2) A lot of talk revolves around "medical tourism", and because of some of the negative issues cropping up recently, "medical tourism" is being put down. Well if you're from Canada, like me, travelling South to the good old US of A is still very much "medical tourism". If we had indeed been able to go to the Eastern US for treatment, it would still have been a 3,500 mile trip. Travelling to Cabo is pretty much the same distance. Follow up in Canada will be the same - limited unless my wife has some sort of emergency - whether we'd gone to New York in stead of Cabo.
I agree that the ads that are popping up on the CCSVI sites for Mexico or India, or any other Country for that matter, are disturbing and making it sound way too easy to get treatment (it's possible that people will forget there's still a lot of personal responsibility involved in this decision).
As for costs, well we in Canada don't have insurance coverage - we have what's called Universal Medical Coverage, but in this case the "universe" is only Canada. If we leave the Country for medical care in the U.S., in Mexico, in Costa Rica, Europe of India, "WE" pay and right now we can't claim it back (other than as a possible tax deduction). So if we make the decision to go outside of Canada, not only are we having to consider the "physical" consequences but also the financial consequences.
So the point of this second part of my topic is to ask that you all understand that right now, we Canadians have no alternative other than "medical tourism". If anyone can give an alternative to us travelling "out of our Country" then do please tell. Obviously over the last couple of months there have been more sites opening closer to the Canadian border, but once we're over that border, we are medical tourists. And don't forget, it's only the last few months that you are able to get treated in the US, unless you "went underground", and that too would have likely left you without follow-up in the event of something going wrong.
Sorry that went on for so long, hope you got this far with me because I needed to get that off my chest
.
Let me say I do not have anywhere near the expertise in physiology or biology that many Members on TiMS have, I do not suffer from M.S. (I'm just an in-law) so I cannot write about how "I" feel thanks to this disease.
I do know that I know very little about MS - but that puts me in the same category as the Neurologists, so that can't be all that bad
.But I want to make two points:
1) my wife was dx'd in 1997, up-graded to Secondary Progressive in 2007. I consider myself to have good reasoning skills, and some might say I am skeptical (though nowhere near some TiMS Members - you know who you are
). I have tried to follow the latest news on MS Research through the years that my wife has had the disease, mostly checking on the MS Society web-sites and getting messages from relatives in both the U.K. and in Australia, though again that info was coming from the respective MS Societies in those Countries.Suddenly in November 2009 we heard the news of this Italian finding a possible connection to MS and blocked veins. I watched the broadcast again (at a later timeslot) and it made sense - "bad blood" leaving iron in the brain and causing the lesions - it certainly made more sense than the body "turning on and destroying itself".
The very next day I was on my PC hoping to find more info - silly me for thinking that the very organization who say they want to "end MS" would have the info I was looking for. That's when I began hunting for sites that could provide me with answers regarding this potential treatment which might help my wife. One of the first sites I found was "TiMS", and I have been an "avid" reader since, daily following on-going discussions re CCSVI as well as following Dr Sclafani's (ever growing) thread.
To say I've become a supporter of CCSVI would not be an understatement - yes I agree there is a lot of research needed, can we improve on the good Prof Zamboni's hypothesis so that we won't see 50% restenosis, can we improve on the stents available and inplant them successfully: can we better manage follow-up ? However as Dr Hubbard said in his recent KOMO News interview, I have "excessive hope" for this procedure. I feel now the same way I felt last November, this treatment makes sense, common sense.
Despite the many symptoms my wife suffered from, and "cog-fog" was definately up there, we talked endlessly about the treatment, each day I would up-date her on what I had found (I did omit many of the youtube videos of apparently miraculous recoveries because I did not want to give her the impression that this treatment was "curing" people).
We discussed the topic with our family doctor, semi-supportive but wanting to see results of trials, and with her neurologist, where at that meeting a time-line of 5 to 6 years before anything was going to happen and this treatment would become available !!!!! My wife did not want to wait that long, in five years she had gone from cane to walker, another 5 years to wheel-chair (or worse) ?????
We decided we didn't want to go "overseas", I think there were some posts regarding thrombosis as a result of long distance air travel, so that ruled out both Europe and India. We got her name on two Eastern US waiting lists, where both doctors were highly regarded in the TiMS circle. Regretably, one was not able to do the work because of "paperwork: problems, and the other's waiting list just kept getting longer, end of 2010, Spring 2011, mid-2011 ????
Then we found a site for Cabo San Lucas, Mexico, and I found one of the patients treated there lived close by so we were able to speak to him personally for his opinion on the Clinic etc. There was no waiting list, the Clinic's specialist was an Interventional Cardiologist who had carried out his own 10 person trial back in June 2010, and who was doing 10 to 15 treatments each week, with limited use of stents.
Cutting a long story short, my wife was treated there October 11 / 2010. We have just completed the one month follow up on CCSVI Tracking, and she is feeling better in the majority of tracked issues - fatigue, cog-fog, energy, bowel and bladder: she has not gotten any miraculous improvements, just slowly things are getting better for her which of course improves her quality of life. Balance and walking are possibly the only items of disappointment, but again as Dr Hubbard said, nerves that have been killed off by the iron deposits in the brain aren't going to come back, so maybe she won't get improved balance and maybe she'll have to keep using her walker - if the disease doesn't progress (which we won't know about for a while) then that will be fine.
So to answer the question of should we or shouldn't we, I am a definate "we should" although right now stenting should be avoided.
2) A lot of talk revolves around "medical tourism", and because of some of the negative issues cropping up recently, "medical tourism" is being put down. Well if you're from Canada, like me, travelling South to the good old US of A is still very much "medical tourism". If we had indeed been able to go to the Eastern US for treatment, it would still have been a 3,500 mile trip. Travelling to Cabo is pretty much the same distance. Follow up in Canada will be the same - limited unless my wife has some sort of emergency - whether we'd gone to New York in stead of Cabo.
I agree that the ads that are popping up on the CCSVI sites for Mexico or India, or any other Country for that matter, are disturbing and making it sound way too easy to get treatment (it's possible that people will forget there's still a lot of personal responsibility involved in this decision).
As for costs, well we in Canada don't have insurance coverage - we have what's called Universal Medical Coverage, but in this case the "universe" is only Canada. If we leave the Country for medical care in the U.S., in Mexico, in Costa Rica, Europe of India, "WE" pay and right now we can't claim it back (other than as a possible tax deduction). So if we make the decision to go outside of Canada, not only are we having to consider the "physical" consequences but also the financial consequences.
So the point of this second part of my topic is to ask that you all understand that right now, we Canadians have no alternative other than "medical tourism". If anyone can give an alternative to us travelling "out of our Country" then do please tell. Obviously over the last couple of months there have been more sites opening closer to the Canadian border, but once we're over that border, we are medical tourists. And don't forget, it's only the last few months that you are able to get treated in the US, unless you "went underground", and that too would have likely left you without follow-up in the event of something going wrong.
Sorry that went on for so long, hope you got this far with me because I needed to get that off my chest
.