Still feel like your banging your head against a wall?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Still feel like your banging your head against a wall?

Postby EJC » Tue Feb 05, 2013 12:53 pm

I came across this wonderfully well constructed open letter, the author used to post on this forum as lilsis but hasn't visited for 2 years now.

Nearly 3 years on from this letter I still feel just as frustrated with the lack of widespread medical interest in the subject of CCSVI and associated "alternative therapies". The contents of this letter are as relevant today as they were back in 2010.

Taken from this blog:- ... sions.html

In April, 2010, two patients with severe stenosis in their neck veins received treatment at the Victoria General Hospital in B.C. In addition to the stenosis, they also happened to be suffering from Multiple Sclerosis. After patient #2 was treated, the hospital shut down access for the procedure and the interventional radiologist who performed the operation was reported.

In response to these actions, Gwendolyn Valentic-Morrison, the sister of BC#2, wrote to nearly 50 doctors as well as the Health Canada Minister, Leona Aglukkaq. She has kindly given me permission to reproduce that letter here.

Greetings Doctors,

It was with great dismay that I read the article in the Victoria Times Colonist and discovered that the Interventional Radiologist who treated my sister, BC#2, may face repercussions for doing his job: treating a vascular patient with a diagnosed vascular pathology.

When my sister developed a sinus infection, she was afforded antibiotics even though no research has been done to prove relieving the sinus infection would alleviate her MS symptoms. When my sister developed nystagmus she was afforded gabapentin even though no research has been done to prove gabapentin can affect MS disease progression. When she developed urinary incontinence, well, there was no medication that afforded her any reprieve from the embarassment of this new symptom.

She was referred to the IR in Victoria because in November of 2009 my sister developed persistent, severe, debilitating headaches. From this point on we began to notice that her face and neck appeared and felt edemic and her eyesight was on a rapid decline. If you've ever noticed how swelling can come and go in a pregnant woman, you can appreciate what we began to notice in the face of my very non-pregnant sister. As a Vodder trained manual lymph drainage and complete decongestive therapist, I performed MLD on the face, neck, soft palate and spine of my sister. Each treatment achieved a reduction in swelling and headache intensity and a surprising improvement in visual clarity, but the results were always short lived.

Immediately after the venoplasty on April 12, 2010, the tremors in my sisters hands that previously caused her to make excuses to go home so we wouldn't see her spill her coffee, all but stopped. Her head cleared, the 'brain fog' was gone. The persistant headaches that had plagued her for 5 months finally disappeared. The persistant neck pain that plagued her for as long as she could remember, stopped. Her hands and feet became warm and sensation returned.

In the 3 weeks since she's had the venoplasty, her vision has improved from not being able to tell if a traffic light is green or red to being able to read the license plate in front of her. She can read small print off of a piece of paper, a task she's been unable to do for over a year and a half. She can walk through her house without hanging on to the walls. Her physical stamina and muscular strength continue to improve. And the best part of all, she has regained control of her bladder, something no one ever expected to be possible.

Endovascular balloon venoplasty was never touted as a cure for multiple sclerosis. Dr. Zamboni has never called it a cure, Dr. Godley has never called it a cure, and my sister never for a moment thought it would be a cure.

But she did believe that in light of the symptoms associated with internal jugular vein thrombosis being so very similar to MS relapse symptoms she had experienced, and that the 'MS hugs' she had experienced were remarkably similar to symptoms of pulmonary embolism which are known to be a complication of internal jugular vein thrombosis, that perhaps by improving venous blood flow she would find some relief of the headaches, pain and swelling.

The Interventional Radiologist was only doing his job, and he performed his duty beautifully. My sister is a patient. As a person with a uterus, tubal ligation and intact cervix she is a gynecological patient. As a person with myopia and now nystagmus, she is an opthamological patient. As a victim of multiple sclerosis, she is a neurological patient. And as a person with a pathologically narrow internal jugular vein compounded by 2 stenoses, she is a vascular patient.

Like every other human being, my sister is a person with a body that encloses all of the body's many vital systems. I must have missed the memo that declared if disease is found in one system all other systems are ignored until rigorous blinded research proves the association of one system to another. Forgive me doctors, as I truly mean no disrespect, but doesn't the fact that we are born with all of our systems contained within our integumentary system prove that one is associated with all? Doctors, isn't it documented fact that by removing any single system one compromises the health of those that remain? Does this not prove that each system is intimately associated?

The Vascular Disease Foundation documents that chronic venous insufficiency (CVI) is a common cause of leg pain and swelling and that on occasion, the cause of the problem isn’t even in the legs, but is in the pelvis. It is also documented that one type of congenital venous defect involves the large deep or central veins and often interferes with their function. Segments of major veins may be absent or narrowed. Or segments may be greatly widened and expanded (dilated), called a venous aneurysm.

All of these malformations have been discovered in the over 750 multiple sclerosis patients who have already undergone venoplasty.

To deny multiple sclerosis patients access to ultrasound testing and venoplasty treatment for diagnosed venous insufficiency is to blatantly claim willful ignorance of a documented medical fact: vein occlusion or malformation can seriously damage the tissues that are affected by said compromised drainage.

To reprimand a doctor for honoring the Hippocratic Oath is unconscionable.

In Health,

Gwen Valentic-Morrison RMT CDT
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Re: Still feel like your banging your head against a wall?

Postby daniel » Sat Feb 09, 2013 10:26 am

When my sister developed a sinus infection, she was afforded antibiotics even though no research has been done to prove relieving the sinus infection would alleviate her MS symptoms. When my sister developed nystagmus she was afforded gabapentin even though no research has been done to prove gabapentin can affect MS disease progression.

Thanks for the post EJC! Sometimes I just wish I could walk around punching all these doctors and legislators playing politics with people's health right in their faces.
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Re: Still feel like your banging your head against a wall?

Postby 1eye » Sat Feb 09, 2013 12:55 pm

That's right. The neurology profession in Canada, has decided that people who "have MS" are nothing but grease for the wheels of the vaunted Health Care System. I, along with many others of my generation, am getting to be old. Someday even the healthiest of us, will in all probability eventually depend on this great System.

If people don't stand up now (I know, some of us can't), for the right to be treated as equals before this behemoth System, won't the other members of our generation (call them "people without "MS") be at the same risk of being culled from society in some kind of eugenic medical Darwinism, because we represent no ready income, and only burden it?

My private health insurance ends when I reach 65. If some miraculous but expensive treatment for "MS" is found after that, if I am still around, it is bound to be too expensive for me to afford. I could only afford DMDs because I was well insured. My pharmacist would not believe the price of Rebif, when they saw it the first time.

I have written to, and visited, the various governments involved. I have demonstrated on Parliament Hill, and witnessed in speeches, what you can read in Hansard, the way we are treated by sitting governments. I believe the patients cannot do it by themselves. (I think by the way, that politicians can get a lot of support by visiting people in nursing homes.)

It has to come from the grassroots, the healthy as well as the sick, the young as well as the old. This country, I am afraid, is getting less democratic all the time, with its current crop of leaders. Some of the opposition are on our side. It's not enough. As long as there is active resistance from the medical profession and the "MS" Society, they will stop your venous insufficiency from being treated, if you have been "diagnosed" as having "MS", here in Canada.
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Re: Still feel like your banging your head against a wall?

Postby Hooch » Sat Feb 09, 2013 5:04 pm

I am also in Canada and although I haven't posted much recently I have been following TIMS and Joan's Facebook thread. Our health system here is so broken when it comes to treating chronic diseases. I still think that acute and surgical problems are treated, on the whole, well. Unfortuately for us there is no incentive to put money into new treatments so we are paid lip service.

Our best champion in Parliament Kirsty Duncan MP is not even able to get responses from the Health Minister. All Chronic disease are treated with symptom control. It appears that finding out the cause and then treating it is not considered cost effective or good for drug companies.

The question is - how do we break this cycle? Many of us are now so much better informed - for example I now know that I have CPn, after sending my blood to the States, but will I be able to get the proper antibiotic protocol here - doubtful? What do we do when we know more about our MS than the neurologists that are supposed to be advising us?
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