How Long Is Too Long To Be Left On The Back Burner?

Two years ago my main interests were base on my family, friends and a couple of hobbies that I could still manage, occasionally. Multitasking difficult things like breathing and watching television at the same time I considered a blessing.

For my first procedure of the jugular veins only, I went through all of the hoops for being tested. I waited the customary three weeks for my positive results. After another month or so I had the RIJ and LIJ ballooned which cleared a 30% and 90% blockage respectively. I have to admit that I didn't really believe the results would be as dramatic as they were. Heat intolerance was worse than it was before the procedure and lack of feeling in my lower legs and feet was still an issue for me. I had my second procedure done after three months. The first procedure was a complete success as far as I am concerned. I was out of my power chair, the crushing fatigue and cognitive problems continued to improve over the first four weeks. After four years of using my scooter, it sits in the closet with the wheelchair. Five years of migraine activity came to an end within three or four days. The specter of the placebo effect haunted me even though I smiled through it all. I am still not clear about the definition of the placebo effect, however I think it unlikely that symptoms I was blissfully ignorant of began to disappear can be relegated to the “it’s all in your head” file.

As a diabetic I knew that loss of feeling could be attributed to diabetic neuropathy. As long as I was walking again, I would live with the numbness gladly. It's amazing how adaptive I was to the changes taking place in my body for 15 years without my knowledge. For instance, I lost my sense of smell, and taste to a significant degree. Eating became routine with little interest on my part. My husband said I was a cheap date because I was happy to limit my dining experience to one or two of his appetizers. The bar above my bed was a constant reminder of the reality of my experience with Multiple Sclerosis. I vowed that it would stay there until I could look at it and not feel that I may need it in the morning. I tried to convince myself that this was not a cruel joke and I would be squarely confronted with the punch line any time.

Anything related to Multiple Sclerosis and CCSVI in particular consumed most of my waking hours. The excitement my family had shown in the beginning gave way to frustration when fighting all the entities against the Liberation procedure became an obsession. They have been kind ,patient and understanding. They also wonder if and when they will be able to celebrate this near miracle without a phone in my ear or computer screen between my face and theirs. Twice I felt that criticism from other people with MS was frustrating enough that I could slither into oblivion unnoticed. Every day another friend or new acquaintance would find a doctor for the procedure or announce their membership in what some us jokingly called the Liberati club, I knew was still hopelessly dedicated to promoting the only truly effective treatment for the symptoms of Multiple Sclerosis.

The more I listen and learn, I become increasingly convinced that a few theories or postulations concerning MS are valid and grossly neglected. CCSVI, EBV infection and other viral infections,Vitamin D3 deficiency, iron deficiency and excess, environmental toxins, life style, stress, trauma. That is an oversimplified and incomplete list. Some of them do not cause MS, but rather trigger the other factors to be called into action. That there has been a wide variety of effects reported by patients who have had the procedure is further evidence that we may be dealing with more than one disease.

As a person with SPMS, I should not have had as much improvement as I have realized. At least according to some of the reports I have read. My diagnosis was based on evidence from the three standard tests for MS; LP confirmed Oligoclonal Bands in the CSF; MRI was positive for lesions (further MRI's confirmed multiple spinal lesions as well). My symptoms are classic for MS. If the tests for CCSVI and the procedure performed are the same as another individual with similar history, shouldn't we have similar results from the Liberation Procedure? Maybe I missed something. Maybe I missed or overlooked a number of somethings.


My second procedure addressed the azygous and sigmoid sinus veins. A venogram was done in lieu of a Doppler or MRV. Blockages were found and addressed in the azygous. A stricture not found the first time in the IRJ was ballooned. Cobweb type occlusions were found in the SSV.
The only significant symptom that has not seen improvement is my intolerance to heat. My doctor is now looking into other causes, likely related to the Thalamus gland.

Not even my old neuro is using the “P” word anymore. We can’t break camp and drop this now. Patience may be a virtue, but it isn’t providing treatment to anyone at this juncture.

Neurologist, Dr. Paul O'Conner: "There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients," he said. "If there is no treatment for this condition, there is no need to detect it". Huh? Dr. Mark Freedman is criticizing but taking no action to change his old "It's a placebo" mantra. They are running out of any possible excuse to delay earnest and timely testing and treatment. Dr. O' Connor, the brilliant Canadian neurologist tells his patients to not even consider the testing because there is no proof that a plumbing job would have any affect on Multiple Sclerosis. With that mindset, what would he consider to be a better name for what we have? In any case, why not treat it?

The United States has it's own share of neurologists with exactly the same opinions. I'm certainly not picking on Canadian neurologists for any other reason than Canadians are tenacious and resourceful enough to expose their detractors. Ours are quite adept at exposing themselves.

Where are they now?

I wish there were a way that mainstream media could highlight the courage and tenacity of so many people who share a commonality by this disease. That in of itself would be an inspiring message in our respective countries and communities.  As impressive as that would be, a closer look at what is breaking through the smoke now would be phenomenal. I have in vain looked for evidence of a global effort of this magnitude anywhere in recent history. Patients asserting their rights as human beings to obtain a life saving, recognized procedure, through educating their medical providers is a brilliant story. Fictional top grossing movies pale in the shadows to this event. How many of us fully understand that there are formidable forces at work to extinguish the fire that ignites out passion? Even with all of their efforts, we are not fading into the background. This movement could be likened to a baby taking its first steps. As with most noble causes, there needs be a period of discovery and forward motion well planned and executed. Two steps forward and one step back is a much greater effort to contend with than our detractors imagined, or could have anticipated.

We have few recognized movers and shakers among our number. All of us have a fascinating story to tell, yet we are not the elite of society. We take the risks, provide the volunteers for drug trials and studies that overwhelmingly end in failure and cover up. No treatment, snake oil, drug or therapy has yet to pull this disease into the twenty first century. The time is far overdue. They reason that it is safer and more efficacious to perform counterfeit procedures on patients hoping against hope that they are the fortunate recipients of the genuine angioplasty. Our desperation, as it has been termed, is a boon for them. They portray us as needy, cognitively impaired unfortunates who don’t know what is good for us. Where were they when Barb Farrell was literally at death’s door? Because of an unusual circumstance, her plight was brought forward for all to see and judge. There are no reporters in any of the other hospitals or private homes where the same situation is being played out at this very moment.

Why not?