The field of CCSVI treatment is ever changing. This is not surprising given that the theory of a vascular component to MS is so new. Many folks, including myself have been angio'd overseas and various clinics in the US. Some of us have experienced great results while others have not. Dr. Simka from Euromedic Clinic in Poland told me almost a year ago, that the rate for re-stenosis was around 53%. Veins are rubbery and if you liken them to a garden hose, they both have "memory". When you carefully roll up your hose after each use it becomes more difficult the next time to straighten it back out. Veins are similar in that when the balloons are inflated the vein walls stretch but if under inflated, over time, they can return back to their original collapsed state.
I was lucky enough to have to require a stent in my left jugular as my vein refused to stay open, even after numerous balloonings. I believe this is why I am still enjoying an MS symptom free life right now. My blood flow has remained open and flowing consistently. I remember back in the day, when I was just researching CCSVI, before my treatment, and I talked to a few Doctors on the "con angio" side. One such Doctor vehemently argued that if the balloon ruptured the valve the intercranial pressure would be disrupted and our heads would swell up, turn blue and our eyes would pop out of our heads as we died. This would be correct if we were talking about veins in our legs but has been proven incorrect for our brains, thankfully. (You FAIL Rose!)
Lots of patients who were initially treated in the last year have re-stenosed and that is most likely due to under treatment which is no fault of the Doctors, really. This is a new field and a very new treatment. We are the pioneering Doctor's lab rats and they are learning as they go. From everything I have read lately I believe that Dr. Arata's protocols for rupturing the valves and using larger balloons seem to be they key to stopping re-stenosis. Patients that have have re-stenosed are flocking to Dr. Arata now and, knock on wood, so far so good! Below is a posting from CCSVI at UBC MS Clinic that everyone should read if they are thinking of going for treatment or re-treatment. If the clinic you are looking into doesn't follow these protocols you might be disappointed at the results and out a whole lot of money.
MS In A New Light -- CCSVI ~ Dr. Michael Arata presentation January 29, 2011 (Seattle)
by CCSVI at UBC MS Clinic - Information and Support on Wednesday, February 2, 2011 at 12:16am
"Multiple sclerosis is a complication of venous hypertension" ~ Dr. Michael Arata
Dr. Arata wanted to share some of his observations based on one year of treating CCSVI. With over 500 patients now treated at his clinic, Dr. Arata feels there are a few exceptions to the MS - CCSVI connection. Dr. Arata sees flaws in the jugular valves in almost all patients on both sides and believes this causes a form of cerebrospinal venous hypertension. In fact, Dr. Arata thinks CCSVI should more accurately be called CCSVH because of this connection (however, he gives great credit to Dr. Zamboni for being a visionary to come up with this theory in the first place!).
This type of venous hypertension is akin to what happens in the lower body with varicose veins. It is well studied and well documented. However, unlike varicose veins, where removal of the problematic valve would lead to an exacerbation of problems, such as lower limb swelling and pooling of blood, disruption of valves in the upper body can be safely done to reduce cerebrospinal venous hypertension and improve patient outcomes.
The main symptoms addressed by correction of this situation are circulatory in nature, such as sleep disturbance, fatigue, headache, brain fog, impaired brain plasticity, and autonomic nervous system dysfunction. These headaches can occur upon waking and while sleeping and can wake a person up. Plasticity is when a second brain area takes over for a damaged or malfunctioning region in the brain. Unlike some other neurological conditions and brain damaged patients, it has been known for some time that people with MS struggle with brain plasticity. Autonomic symptoms include thermal regulation, cold extremities, and heat sensitivity. I asked the question if unregulated blood pressure would be included in these autonomic symptoms and Dr. Arata agreed. My BP has wild swings without any apparent reason.
Other symptoms commonly associated with MS are more likely to be caused by damage to the nerves themselves and not a direct result of the hypertension. These are the symptoms that take longer to respond to angioplasty and may never improve if the damage is significant enough.
He felt impaired brain plasticity was a complication of end stage venous hypertension (i.e., where the brain can no longer recover from MS attacks and is left with lasting damage). Dr. Arata felt that combined therapy aimed at reducing venous hypertension (CCSVI treatment and valvuplasty) and reducing inflammation (drug therapies and nutritional approaches) is most effective. Dr. Arata is going to integrate Dr. Bill Code’s ideas on the nutritional aspects into his treatment and maintenance recommendations.
Dr. Arata described primary CCSVI, the most common type, is generally a result of malformed valves in the jugular and azygos veins. Primary CCSVI causes venous hypertension of the jugular and azygos veins. The valvular deficits may or may not narrow the vein. What appears to be upstream venous lesions (narrowings) are actually collapsed veins, not stenoses, and should not be ballooned. These are in the mid-jugular region and ballooning in this region just introduces unnecessary venous damage and trauma. According to Dr. Arata, “it’s all about the valve.”
Valve disruption involves valvuplasty involving oversized or cutting balloons. It is difficult to know when the valve has been sufficiently disrupted during a venogram – this must be done visually using experience.
A secondary type of CCSVI is imaged through MRI involves hypoplasia or aplasia of the sinus of the brain. (Hypoplasia is the underdevelopment or incomplete development of the vein; aplasia is defective development or a birth defect.) Treatment is venous stenting of the hypoplastic segments. He described people with half their jugular veins missing. Endovascular reconstruction (i.e., vein grafting or bypass) is extremely challenging at this time and has not been demonstrated to result in successful outcomes in people treated for CCSVI. (Surgical correction and vein replacement is not recommended – if this is needed, you will need to wait for the science and techniques to advance.)
In the azygos, secondary CCSVI can manifest as a compression of the vein between the heart and spine and, in the hemiazygos, against the aorta. Dr. Arata feels stent placements in the azygos are safe. He no longer recommends stents in the jugulars except in rare circumstances.
Secondary CCSVI caused by problems situated at at the craniocervical outlet (base of the skull) is a poorly suited environment for current endovascular techniques.
Dr. Arata echoed Dr. Hewett's earlier comments that a lifelong commitment to our health is necessary when we embark on a program of angioplasty to manage our venous health. When asked if he felt Canadians would be able to access subsequent treatments through our public health system, Dr. Arata actually said he was envious of the situation in Canada. He said Canadians have brought this issue to the attention of their governments and doctors and the media in a way unlike any other country. He is confident the process will result in available treatments in Canada after due diligence is done with studying research and patient outcomes. Even though he stated he felt this would take approximately 5-7 years, he said that is a better situation than currently exists in most other countries. When asked when the US would start addressing this through their media, Dr. Arata was careful to keep his opinions to himself despite someone from the audience calling it a media conspiracy because of the amount of pharmaceutical advertisers.
~ Sandra (with a lot of help from Shannon!
http://www.iamsickofms.blogspot.com/