Chronic Cerebro Spinal Venous Insufficiency (CCSVI)

 

 

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January 14, 2011

 

I was diagnosed with Multiple Sclerosis at the age of 42 and had limited treatment options within the standard model of Western Medicine. This drove me to seek healthy, non-drugging solutions to manage the neurological deterioration, depression and pain.

I first read about CCSVI (Chronic Cerebro Spinal Venous Insufficiency) in September 2009 after receiving an email from Dr. Ashton Embry of Direct-MS.com. I read Dr. Zamboni's article and found it interesting, but it sure was a paradigm shift.  I did not pursue it further until November 2009 after watching a CTV W5 program where Avis Favorro interviewed Dr. Paolo Zamboni.  Then the initial article combined with the video bore fruit from the initial seed planted two months previous.

I contacted a long time friend in Canada who is a stroke neurologist. We had worked together to establish a Stroke Research Center of Excellence at the University of Saskatchewan in the late 1980s. I asked for an ultrasound/Doppler of my neck veins i.e. jugular veins. My wife Denise, and I traveled to his facility in early December 2009. He felt the concept was also quite a stretch, but he arranged to have a technician do an ultrasound of my neck, carotid arteries and jugular veins, performed in the supine, or lying flat position.

Ultrasound of the carotid arteries is a critical examination when evaluating someone for stroke risk as approximately 60% of strokes originate from this area. However, even though this was a very experienced carotid artery ultrasound technician, I believe it was her first evaluation of jugular veins. This is very important for anyone having the neck veins evaluated with ultrasound. Firstly, the person doing ultrasound needs to be extremely well trained in the specific area of assessing jugular veins. If this is not the case, it is quite easy for them to call a variation of anatomy as a normal jugular vein.

Secondly, as well described by Dr. Zamboni, this jugular vein examination must occur in both lying down and sitting up positions. Classically, the flow in the jugular veins is much better in the lying flat or supine position. Meanwhile, when you sit up, the jugular veins should almost be collapsed, as the majority of flow should occur through the vertebral veins into the azygos vein. A later study of my jugular veins indicated that I was virtually the same in both positions, which is a distinct abnormality.

I do not fault the first technician as she was extremely good at what she was trained to do. However, an ideal future possibility would be that patients examined for their carotid artery could also have an examination of their jugular veins. This would require minimal additional training and then would be performed by the group with the most expertise in ultrasound of the neck blood vessels. It would require including the sitting position. An important side note is that optimal neck ultrasound is very observer dependent hence it requires someone with good training, time and patience. Also, one cannot evaluate the azygos vein with ultrasound as it lies between the heart and the front of the vertebral column.

It’s important to mention that it is in stroke prevention and treatment following a stroke that there is often interventional radiology of the carotid artery. An angioplasty of the carotid artery is quite a high-risk procedure due to the risk of any displaced plaques or clots causing another stroke. I believe this is one reason neurologists are so very anxious about interventional radiology treatment for CCSVI. This is not difficult to understand if one recognizes the major challenges that occur when we get a stroke or loss of blood supply to a region of the brain. Recovery from a stroke can vary dramatically. We know that it is critical to prevent the next stroke.

In contrast to this, interventional radiologists recognize that angioplasty of veins is a relatively safe procedure because it deals with a low-pressure system. In addition, plaque hardly ever occurs in the venous system and if a blood clot should occur it travels to the heart and is pumped to the lungs. In the lungs small blood clots are dealt with routinely and create no major troubles. Once again neurologists have described blood clots to the lungs as a devastating and potentially lethal outcome of CCSVI angioplasty. However, the risk of serious blood clots to the lungs is almost completely due to large blood clots from the leg or pelvic veins. These are large enough to restrict or almost eliminate the heart function and so represent a large risk factor. The size of the blood clot generated from the jugular or azygos veins is relatively minimal and has very little acute risk to stopping heart function. If one looks at concerns of some neurologists we realize their anxiety is somewhat misplaced. We must remember to compare apples to apples and oranges to oranges.

Following my evaluation with ultrasound of the neck in the supine or lying flat position, I was assessed by a MS neurologist. He described Dr. Zamboni's article as incomplete and poor quality science. Unfortunately, he, like myself, had not ventured into the research literature about similar discussions of restricted outflow of blood from the brain or excess iron deposition in the brain. In fact, I felt scolded by the exchange. I journeyed home with my tail between my legs!

After this dampening of enthusiasm I began to research further and entered a waiting list of an examination facility and a potential treatment facility in the United Kingdom. In my follow-up research I spoke with Dr. Ashton Embry about CCSVI and he had guest speakers Dr. Weinstock Guttman, neurologist and Dr. Zivadinov, neuroimaging specialist, from Buffalo, New York, to Calgary, to speak. At the last minute I was unable to travel to Calgary for the discussion but was able to review much of it online. In July, I was booked for an early September assessment at the Buffalo Neuroimaging Analysis Center. This would include an extensive MRI, MRV; an ultrasound of the neck veins; neuropsychological testing and review by an MS neurologist. I decided to go through the best assessment unit available so I would be equipped to answer questions to others about my own CCSVI experience and therefore what I might suggest for them.

Meanwhile in late July 2010, I was contacted by Sandra Birrell, from Victoria, to introduce the topic of CCSVI at an August 9 seminar in Victoria. I was to outline the issues of anatomy, physiology and angioplasty prior to the personal stories of six people who had undergone treatment. Over 300 people attended and it left a profound impact on me. The six individuals had traveled all over the world including the United States, India, Mexico and Europe. Their results varied from very good to modest, to minimal. I now believe this variability is due to early procedures sometimes being incomplete. However, I applaud these early adapters because without them we would not be as advanced today in our angioplasty techniques.

 

On September 1st in Buffalo, New York, I began my day with a 100-minute MRI. This was at least double the length of any previous six MRIs, in Canada. To put it mildly my neck was not happy with the experience. My neck does not extend well on flat surfaces but I got through it with a lot of visual imagery and grit. Then I had time for a quick lunch before the ultrasound of my neck that included the transcranial Doppler. This of course was performed in the Zamboni fashion as the technician had been trained in Italy and was now training others, including Canadians. Hence it was very thorough and was performed in the sitting and supine positions. The report I received the next day revealed that I had four of the five criteria of Chronic Cerebro Spinal Venous Insufficiency or CCSVI. In fact, Dr. Zamboni states only two of his five criteria are required for the diagnosis of CCSVI.

 

After the ultrasound I then had a two-hour session of neuro psychologic testing as I was participating in an overall larger study. Needless to say, I was exhausted by this time, as anyone who struggles with the fatigue of MS or other health challenges will understand. The next morning I had a very thorough interview, examination and discussion with a superb MS neurologist, Dr. Weinstock Guttman. She went over the results of my ultrasound, MRI, MRV and iron assessment of the brain. This included a pictogram of the Iron Map and Iron Data Graph that demonstrated how multiple sclerosis patients have more iron than average. I had more than the expected brain iron, based on my age and my multiple sclerosis. Dr. Weinstock Guttman also reviewed my head and neck ultrasound with me. She described I had four of five of Dr Zamboni’s criteria (see earlier insert ECD-TCCS Parameter picture).

 

Overall, it was, without doubt, the most complete evaluation I've had by any MS neurologist since my diagnosis in 1996 by Dr. Donald Paty, at the University of British Columbia, Vancouver, Canada. Before leaving Buffalo that afternoon, I was fortunate to meet with Dr Zivadinov and discuss his ideas about neuroimaging, and many of the features of ultrasound diagnosis and CCSVI.

Following my assessment in Buffalo I encouraged my sister with multiple sclerosis to also go. She has since followed through, with similar findings to myself. I decided to continue to research and locate treatment by angioplasty for my own CCSVI.

My wife, Denise, and I had already committed to a three-week Rotary friendship exchange to Melbourne and the state of Victoria in October. Therefore I contacted two people in Australia, one with multiple sclerosis, and the other a longtime family friend to see if I might be able to have the angioplasty in a private clinic while in Australia. Both of my contacts hit a brick wall, and once again there was something of a scolding attitude. Therefore, I thoroughly enjoyed my trip to Australia and deferred my angioplasty search until I returned home on October 27th. Of note, one of my new Australian friends has had two episodes of the transient global ischemia of undetermined origin. This may also be linked to CCSVI.

I was again invited to speak at a seminar on CCSVI, in Vancouver, on November 16. An interventional radiologist from Pacific Interventionalists (PacificInterventional.com) was also going to be in attendance. I did some further research on this group of interventional radiologists and felt confident in selecting them. On the morning of November 16 I booked my procedure at the Pacific Interventional facility in Costa Mesa, California, and placed my $1000 deposit after meeting Dr. Joseph Hewett.

I was very impressed with Dr. Hewett as he spoke about handling standard cases and problem cases including misplaced or clotted stents and incomplete treatments. I learned years earlier that in medicine the best person to do a treatment is someone who is experienced at dealing with the problems of the procedure, especially from other facilities. It is never easy to solve a problem created by someone else, but completely necessary. This is a relatively new procedure and hence every week new information and wisdom surfaces about it. In addition, Dr. Hewett passed my assessment, as he was articulate, confident and patient with questions from the audience. Admittedly, it also helped that he grew up and completed high school on the Canadian prairies as I did! 

Finally, he outlined three symptomology areas that responded especially well to angioplasty of CCSVI. These included fatigue, headaches (especially upon waking), and sleep disturbances. I had all three and realized resolution of even one would be worth the treatment. My procedure was booked for November 29, 2010, immediately after the U.S. Thanksgiving long weekend. I was able to have my consultation and procedure on the 29th as my Buffalo, New York, MRI, MRV and iron assessment was acceptable for their use. Otherwise, I would have needed to have this investigation performed with the procedure one or two days later.

Denise (my wife) and I flew from Victoria, Canada, to Seattle and then to Palm Springs, California on November 28. We had elected to stay there for a week of rest and relaxation in conjunction with my angioplasty. Fortunately there was no time difference as we were up at six o'clock the next morning to drive to Costa Mesa. We arrived at eight o'clock and I had my consultation at 8:30 with Dr. Michael Arata. I liked him immediately. He explained things thoroughly and was patient with my and Denise’s questions. I learned more about his approach to angioplasty for CCSVI as it includes valvuloplasty, or expansion of the jugular vein valves as well as close assessment and similar balloon angioplasty of the azygos vein.

I was also instructed to ingest nothing by mouth due to the sedation and analgesia during the procedure. This surgical facility has several operating rooms and an anesthesiologist on-site. This was near and dear to me as I am a board certified anesthesiologist in Canada and the United States, although MS ended my practice in 1996. Dr. Arata also explained that stents might be indicated, but this was uncommon in treatment of the jugular veins since they have adopted the larger balloon use of 16 and 20 mm in diameter (when inflated).  Nearly always the body will reestablish flow in the jugular veins over six months. After listening to Dr. Tariq Sinan ‘s September 27th, 2010 presentation, I believe this is in keeping with the knowledge he gained through his experience in Kuwait. My family and close friends encouraged me to have the procedure, but avoid stents completely. My personal attitude was that I needed to trust the person doing the procedure and listen to their best advice. I believe this is a piece of angioplasty for CCSVI that has gradually changed over the last two years. If one does have to have a stent, then it should be as large as possible, and is better tolerated in the azygos vein as it is quite protected inside the thorax or chest cavity. In fact, some of us will require a stent in the azygos if the heart muscle impinges on the azygos vein up against the front of the vertebral column.

I was very impressed and pleased with my preoperative, operative and postoperative care at the facility. I was unable to watch the procedure and in fact do not remember the angioplasty of my jugular veins, but I could feel the work inside the azygos vein. It was not unpleasant. Dr. Arata used a 16 and 20 mm balloon to angioplasty the valves at the bottom of my left and right jugular veins, respectively. I believe a 14 mm balloon was used inside my azygos vein. In summary all three veins were treated. I noted an immediate reduction of pressure inside my head on the operating room table. This impressed me. In addition, I appreciated the intravenous sedation with fentanyl and midazolam, two of my old friends from anesthesiology! I have spoken to others who had zero sedation and consequently suffered considerable discomfort.  I also received intravenous fluids, supplemental oxygen and monitoring by ECG and pulse oximeter. This is modern care and I appreciated it.

Following the procedure while I was in the recovery room or in Post anesthesia care, Dr. Arata spoke with my wife. This meant a great deal to her and therefore to me as I would have forgotten most of the information because of the amnesiac effect of the midazolam. I was discharged and we ate Thai food before Denise drove the 2-1/2 hour journey back to Palm Springs, much through rush-hour traffic. Dr. Arata had suggested ibuprofen 600 mgs three times a day for two days, with a follow-up visit in 48 hours. The Ibuprofen was anti-inflammatory, to reduce the possibility of a platelet plug or clot formation occurring on the raw surfaces of the angioplastied vein. Prior to the procedure I was told to avoid all nonsteroidal anti-inflammatory drugs for at least three days. Hence, I had obtained a prescription from my family doctor at home in Canada for Tylenol with codeine for headaches pre-op. I was able to continue my desiccated thyroid and Low Dose Naltrexone prescriptions.

 

My postoperative course has been reasonably uneventful. Perhaps one of the most important observations was Denise noting that my face and forehead were dramatically pinker immediately. I awoke with a considerable headache the next morning and this persisted until two in the afternoon. I continued my ibuprofen 600 mg and added the Tylenol with Codeine combination with reasonable relief. The headache occurred the following morning with a similar outcome by two in the afternoon. However, since then I have had virtually no headaches. I attributed these early headaches to the healing process, as there was a dramatic shift in the profusion of my brain. This is critical as I was previously experiencing four to five headaches per week. In addition, my sleep improved almost immediately and this has continued to date. Within a few days I noted that the hesitancy and urgency problem with my bladder had all but disappeared. I felt I had a bladder closer to what I had 30 years ago, but I am now 57. 

I saw Dr. Arata two days after the procedure and met five more fellow Canadians in the waiting room. Two were from Québec, one from Ontario and three were from British Columbia, including myself. Denise then drove me back to Palm Springs and we enjoyed several days of sunshine and some outlet mall shopping. I tolerated the shopping very well and realized that my fatigue had diminished to some degree.

Since my procedure I have continued on my anti-inflammatory diet and supplement regimen. During my Integrative Medicine training with Dr Andrew Weil, I learned the anti-inflammatory diet was critical.  If one gets the nutrition correct, the body heals quicker and with less scarring. This is just as important for a new scar inside a vein as it is for one on the skin surface. An injury on the skin surface reacts with inflammation including redness, swelling, heat and pain. The more fully the inflammation is controlled then both the scar and the scar contraction are reduced. Reducing inflammation was critically important to prevent the scar forming on the inside of my veins from contracting down. It is my belief that optimal nutrition can decrease the likelihood of needing a future angioplasty.

My personal regimen includes at least 3000 mg per day of combined EPA plus DHA from molecularly distilled fish oil. I do not use cod liver oil or halibut liver oil as this might provide excess vitamin A. In addition, I recommend 10,000 units of vitamin D3 per day for a month prior to angioplasty and for at least three months thereafter. We know that vitamin D is very important in blood vessel health and is anti-inflammatory at or above 2000 units of vitamin D per day. In addition, it is extremely safe to take 10,000 units per day for six months. This is intuitively correct as even modest sun exposure during the summer can produce at least 10,000 units on our skin daily.

I regularly take 40 to 60 g per day of quality, micro filtered, whey protein isolate prepared at low temperature. I do this in two divided doses and usually include two Tablespoons ground brown flax. Ground flax is a valuable omega-3 source as well as soluble and non-soluble fiber. In fact, I have been on this regimen for the last ten years and believe it has contributed to holding the ravages of multiple sclerosis at bay.

For anyone who has been relatively immobile, the extra vitamin D helps muscle strength and balance. In addition, whey protein is a valuable resource in rebuilding muscle strength and muscle recovery. Whey protein is high in bioactive Cystine, which assists in wound healing. Quality whey protein isolates are recognized to raise intracellular glutathione (our master antioxidant) throughout the body, and may assist in the removal of excess iron from the brain.

In the six weeks since my angioplasty in California I have continued to learn about the entity of chronic cerebrospinal venous insufficiency. I believe it is related to improper circulation, perfusion of the brain and oxygen for the brain. CCSVI may be a unifying factor in hydrocephalus, spina bifida, Chiari malformation, syringomyelia and transient global ischemia. It has been suggested these factors may play a part in leukoaraiosis (LA), which is white matter lesions in the brains of the elderly with cognitive problems.

Another mystery to me is why nearly all of my lower back pain disappeared since my angioplasty. We do know that there is a major circulation connection with the azygos and hemiazygos veins that include the lumbar sacral plexus. Once again, it may all be about circulation.

Another important feature that bears mention is the excess iron in the brain of multiple sclerosis, Parkinson's disease, Alzheimer’s disease and stroke patients. Does this iron reduce in the brain after angioplasty? Or alternatively, is it necessary to assist the removal through some type of chelation? I know that Dr. Mark Haacke is especially interested in this area and has developed a way to consistently measure and follow the iron levels.  I believe we may be on the verge of another set of treatment modalities for several cerebrospinal diseases.

In 6 months I will repeat the MRV MRI and iron assessment. It is my dream and goal to help establish a registry via online questionnaire to evaluate others signs and symptoms pre-and post-angioplasty for their own CCSVI. I certainly believe this is larger than multiple sclerosis, but that is the group that has embarked on this journey in large numbers, approximately 10,000 to date.

In short, I believe CCSVI is the “real deal” and is a part of the critical puzzle for the signs and symptoms of MS. Historically, coronary artery bypass grafting and coronary angioplasty were developed for symptomatic relief of chest pain. Why not angioplasty CCSVI for relief of fatigue, headaches, neuropathic pain, sleep disturbance, muscle spasm and balance problems in MS?

 

 

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2008 DR. BILL CODE. ALL RIGHTS RESERVED.