A couple of weeks ago, our friend Hassan felt a tightness in his chest, and then a few other troubling symptoms of cardiovascular disease. In the middle of the night he called for an ambulance, and next day had a stent in place, firmly holding apart the walls of a formerly constricted artery. His heart had also been thoroughly examined and he went home not just feeling much better, but assured there was no lasting damage. Angioplasties have been performed regularly for over fifteen years, and since 2001 at a rate of over two million per year. The risks and benefits are well known.
A catheter inserted through the groin is used to transport imaging dye, a movie camera, a balloon and the stent up to the heart. This being Canada, Hassan wasn’t billed on his way out of hospital, though he has been paying income tax all his life which, of course, is what covers the cost. Some Americans think Canadian health care is an abomination, others think it’s admirable. In the end, it’s the nurses, doctors and technology that make the difference; the way they’re organized is just another system. Anyway, we’re about to experience the U.S. system for ourselves, as Canadian health care refuses to give Caroline the treatment she wants.
About a year ago a procedure not unlike Hassan’s was suggested as a possible treatment for multiple sclerosis — but in veins rather than arteries. Venous problems have been associated with MS since 1863, and in 2008 the vascular surgeon Dr. Paolo Zamboni found constricted veins in the necks of MS sufferers, including his wife. Following balloon veinoplasty, opening the veins to blood flow, he reported their conditions improved, and proposed a theory called CCSVI (chronic cerebro-spinal venous insufficiency). It doesn’t account for all symptoms and occurrences of MS, and it’s far from proven, but it is generally considered worthy of study. None of Dr. Zamboni’s patients suffered any ill-effects.
Over the period of 2010, however, the Canadian response has been timid, to say the least. Proposed studies are limited to considering the viability of the theory, and draw the line at testing it on willing patients. Thousands of MS sufferers consider immediate experimental treatment preferable to allowing the disease to progress further, whether or not it works. They’re lining up to travel abroad for expensive treatments with no guarantee. The perception is that veinoplasty carries no greater risk than angioplasty, and certainly less than the long-term effects of existing MS drugs, none of which even pretend to halt disease progression.
Medical authorities in Canada, as well as the MS Society and the Federal Minister of Health Leona Aglukkaq, have responded with great reluctance to the demand for accelerated studies, or even follow-up for those who undergo the treatment abroad. Dr. Mark Freedman, a member of the MS Society’s Medical Advisory Committee, recently described those advocating CCSVI as a “mass hysteria movement based on unfounded facts that has led to no less than a cult.” The medical establishment is also describing the treatment as “dangerous,” pointing to two deaths (one of which was fictitious) following veinoplasty treatments in which stents were used — something Dr. Zamboni categorically rejected. In one case, the stent migrated into the chest and was successfuly removed, despite reports to the contrary; in the other, it became clotted with blood. Artery walls contain muscular tissue that contracts and expands with the pulse, but vein walls are soft and collapse when not filled with blood; their ability to hold stents in place is quite different.
The long and the short of it is that this weekend Caroline and I travel to Albany NY, where she’ll undergo the procedure. Her condition has deteriorated over the last year and she’s hoping this will stop it getting worse. The treatment’s expensive and although common sense dictates that money’s not the issue, cost is an added stress. She’s also adamant that no stents be used, but worries that if scans show the veins closing up they’ll be recommended — she doesn’t want to have to refuse. She also worries about the follow-up that’s required but not available in Canada. We’ll have to travel the four or more hours to Albany, in unpredictable winter conditions, for routine scans and in case we need any sort of ongoing reassurance, examination or explanation.
Finally, we have to leave behind the support system of Caroline’s friends and family, not to mention the familiarity of her doctors and pharmacists, to explore something that, proven or not, is an option she feels is not really an option. She thinks she’d be crazy not to try it. I can only agree. We’ve looked at Zamboni’s theory; clearly, it’s not comprehensive, but thousands of people so far have claimed marked, long-term improvements. Who cares that no one can properly explain it? She’s not naive enough to expect a cure; at best, she hopes it will end or at least reduce the debilitating fatigue that dogs her day after day. At the very least, she hopes disease progression will slow, so she can exercise her balance and strength. As long as she avoids stents, we don’t fear bad outcomes, despite dire warnings from the Canadian medical establishment. If their fears are well-founded, they’ve done a poor job of communicating them. Frankly, they seem more afraid for themselves than for their patients: of losing face, and of compromising their collaboration with pharmaceutical companies.
Their reaction is disappointing to say the least. They’re rightly concerned with the viability of the theory, but their inability to acknowledge the desperation of their own patients, their refusal to fast-track experimental treatment on willing volunteers and, above all, the denial of follow-up treatment to Canadians travelling abroad, is not only uncompassionate but also unprofessional. They’re giving MS sufferers no say in the matter. The system saved Hassan’s life in a weekend, but a whole year after Dr. Zamboni’s announcement of a new treatment for MS, Canadian medical researches are not one step closer to knowing whether it’s viable or not.
Go for it Caroline – and I wish you all the best. I know a person here in the village who had it done in the summer, and she swears that it worked. She also went down to Albany.
Stephen and Caroline,
My thoughts and prayers (though admittedly, I’m not a tremendously religious person) are with you both in your collective pursuit of good health for Caroline. Caroline, I sincerely hope that your upcoming treatment is 100% successful and painless. Stephen, as someone asked in class this week, please keep us updated on your blog.
I have taken the liberty to ask my sister, a physician in Virginia, whether she had any practical info for you (recognizing that she is, in fact a pediatrician). In two separate emails, I will forward you two medical articles she sent me. I’m sure that you’ve read virtually every medical article on the subject but who knows, you may find something of interest.
Good health and happiness to both of you and your family. I consider myself unbelievably lucky to have crossed paths with you this year (as we say in Jewish, a “mitzvah”). I look forward to seeing you again in January in Hudson. We will toast your good health news (after class of course).
Jeff
I think of you both every day and my thoughts and prayers will be with you every step of the way. I really enjoyed this blog. I couldn’t help but comment. With all my love and from the bottom of my heart, thank you for sharing.
Alberta today became the latest province (after Saskatchewan and Newfoundland) to fund the study of this treatment. Dr. Tom Feasby, dean of the University of Calgary’s Faculty of Medicine, said “It will help us understand the experiences of MS patients having this intervention, including any complications.” —One of the good guys! (more)
Also, from Angus Reed: Canadians Support New Procedure for Multiple Sclerosis Patients
Caroline, though far away, my thoughts still accompany you and will do even more so over this weekend! I hope that when this trip is over you can return with a huge smile on your face to your family!
Stephen, congratulations on writing about this and I wish you the very best of luck to keep expanding this information!
“¡Muchos exitos!”
Hello Caroline and Stephen
We do not know each other well… I have been to your mindful meditation workshops, and I have loved it, and what I learned has been helping me through a tough time… I do hope to come to your workshops again some time in the not too distant future…
I just want to wish you all the best with your endeavour, I will be thinking of you and including you in my prayers 🙂
Good luck, and do let us know how you are doing…
From a budding reflexologist, Andrea
It boggles my mind the reaction of the MS society and the leading MS neurologist with respect to the CCSVI treatment and their approach. It seems they have no problem prescribing daily injections of drugs valued at over $1,000 per month, yet completely dismiss the notion that constricted veins may not be the cause of MS but possibly a result which if addressed could produce great relief for suffering patients.
I have just come back from Israel and Switzerland where I had stem cell therapy (at a very significant cost ) I am glad I went. In the interim of the stem cell therapy I also placed my name on a waiting list in Albany. Why canada would want to support meds that are extremely costly and be so closed minded for these treatments is frustrating.
I just wish there was a way to gather MS sufferers and start advocating for more rights to treatments before the disease progresses.
Good luck
I am disappointed but not surprised by the government’s reaction to this issue. However, I am shocked by the MS Society’s lack of support. They are supposed to be a patient advocacy group. If they aren’t advocating for the patient, what the heck are they doing?
Good point Lianne; I’d actually forgotten that. Of late, the MS Society’s been acting more like an advocacy group for threatened neurologists.
Hello Caroline & Stephen:
My best thoughts and prayer for Caroline and you Stephen. My aspiration is after a sucessful procedure Caroline becomes an advocate here up in the far North where MS for some reason is more prolific.
Dear Stephen and Caroline!
I wish you all the best, a safe trip and a safe procedure! Hugs and kiss.
Julie
Stephen, I read this entry with a great deal of sadness for the predicament in which you find yourselves–it was something I had not known about previously. You and Caroline will be prominent in my metta practice in the next few days, and I send my hopes and wishes that this treatment will prove effective. It’s a cliche to say “my heart goes out”–but it does. I just wish there were some better way to say it. With blessings…
Dear Caroline and Stephen:
In reading through all of the above I realise that often when going through very hard times you can meet the kindest of people….I hope that the well wishes and support you receive from all of your readers, your friends and family, although a good distance away, will prove to be of great comfort.
You have explained the important follow up routine, and I trust the recovery period will be neither too uncomfortable nor too long. I agree it would be quite wonderful to see you as an advocate for our Northern MS sufferers. I can well imagine you leading in this role as you appear to be a woman with a lot of drive, not too mention your incredible insight. It always amazes me Caroline in going through your life with MS you still have the ability to be such a compassionate listener, as do you Stephen carrying on with your role of caregiver. Having been on the receiving end of your ‘comfortable’ shoulders….I thank you for being so kind to me. I have learned that life’s tragedies lend to having more understanding and you have been able to avoid becoming so self-involved that you still have time for others.
May this procedure give you that energy that you so desire, may it lend to a better quality of life for you, may you not have to have that stent and above all may you come back to your family and friends, in improved health and happiness.
While our paths only cross now and then, you have to know how highly I regard both of you. You are in my thoughts….and anxiously await more news.
Love Veronica