TEN BIGGEST LESSONS LEARNED FROM MY BROTHERS’ CCSVI VENOPLASTY in MEXICO
These are some personal thoughts (no advice) about a recent trip to the Clinics of the Heart in Los Cabo San Lucas. I accompanied my twin brothers who have been diagnosed with CCSVI as well as MS, to open their vein restrictions there. Yesterday, they returned home, proud of doing the treatment and looking forward to their "new legs" and lives.
Lesson 1: What a number of different people are affected with MS…but who wants to be 30 years old and sentenced to a wheelchair existence? Some had suffered for 53 years...some had been diagnosed for just 4 months. Farmer’s wives, lawyers, accountants, real estate developers, business owners, insurance brokers, health care workers, even a physiotherapist who at one time cared for MS patients…it didn’t matter the occupation or environment. MS had struck them all at various stages. Some were bound in wheelchairs or scooters...others had leg braces and canes, some shuffled along with help of partners.
No one seemed to have the illusion that treatment for CCSVI was a magic catheter or wand. Thoughts of liberation were linked to small steps of improvement. Articulate understanding of the issues…intelligent conversations…Nothing is working for me...and I’m getting worse. I’m having reactions to drugs. Why not open our blood veins...that’s all we ask for. I just want to play with my children again.
There was a community of shared feelings...instant bonding. It was commented about the numbers of wives and husbands still supporting their spouses...families who persevered together.
Only words for the MS Society were frustration, disappointment and betrayal.
Lesson 2: The treatment protocol was similar for all 17 people that week. Each person received a MRI with venography, Doppler Ultra Sound of neck veins and neurological assessment scale of 8 functions.
The medical staff was efficient and understanding.
The catheter insertion was a tiny opening. The opening of the balloon was temporarily painful but dealt with medication if too uncomfortable. If an occluded vein proved too difficult to open, then as a last resort, a stent was used. A couple people did receive it.
After the treatment, the next day, the neurological test was reviewed again to check for signs of improvement. If no improved evidence, then the doctor would want to do another treatment.
Lesson 3: The number of varied responses following treatment was to be expected. Everyone talked about the unique treatments to open their veins and degrees of recovery. This was logical because each person started with various symptoms, suffered for different time periods, with different prior health status.
Here are some of the comments shortly after the treatment:
I can see the veins in my hands again...
My daughter’s mouth droop is gone...
My hands and feet are warmer...
The purple discoloration in his foot is gone...
My sense of well-being is clearer...
My numbness on my side is gone…my fingers don’t tingle...
I couldn’t do this before...quick two-step or pirouette....
I don’t have to take bladder control meds...
I can do some of my yoga poses...
Why is everybody’s response so different?
Is it the duration of disease…months versus years?
Is it because of physical fitness prior to treatment? More weight or less weight?
Is it degree of stenosis? Procedures varied from one and half hours to four hours.
It certainly seems, logically, the sooner this condition is treated…the faster the recovery with proper blood flow can be expected.
Lesson 4: A big surprise was the unexpected nature of twin brothers’ irregular veins. The imaging and actual venoplasty showed very similar restrictions and blockages in both jugulars and azygous veins. Could be this be a genetic factor here? However, both brothers have widely differing symptoms at the beginning and different results after treatment. It would seem that similar vein structures didn’t seem to play a part in development of MS symptoms.
Therefore, what kind of practical information can neurologists hope to conclude by studying veins for the next two years when twin brothers can have such similarities and differences?
Lesson 5: Another exciting possibility that warrants more investigation is physiotherapy following venoplasty. On one hand, patients get the benefits of normal circulation and vein reflux control. But on the other hand, for people like Matt, who had increasing problems walking with a spastic left leg, now some exciting possibilities were seen with physiotherapy. It makes total sense that leg muscles that haven’t been used properly for years now need to be restimulated to make original connections to normal walking.
In fact, this is exactly what happened. A registered physiotherapist did some neuro-stimulation on his left thigh quads and noticed his tibia anteriors (front leg muscles) were also interacting. He could curl his left foot toes with the neurostimulators on or off. She was amazed because it showed there was nothing wrong with the nerves in his leg but they needed more reconditioning to reprogram the brain to correct footdrop and inversion spasticity.
Can this be the other side of the coin…proper circulation then proper stimulation for reco-ordination and mobility?
Lesson 6: No doubt, there is a worldwide medical revolution happening. A young MRI radiologist said he wanted to be known as an imagist because the growing medical emphasis is to image the body to see internal structures and implications for disease. The focus is to try and correct abnormalities versus taking a host of synthetic drugs that often mask symptoms at best...at worst, create a cascade of side effects. Correct structural problem…correct body’s own homeostasis.
What causes veins to constrict or azygous veins to twist seems largely unknown.
It is understandable why neurologists are standing their elitist ground on their 100 year old theory about autoimmunity. Nobody likes to be wrong. Some have even refuted images of better blood flow. Double blind studies are a scientific paradigm but when a new theory takes flight without need for prescription drugs and side effects and such informed patient advocacy, then due diligence must be paid to honor patients’ choices for care.
Lesson 7: There is so much more scientific research needed. But for the first time in history, putting together a data base of empirical evidence is on the shoulders of people who have undergone the procedure. What is Health Canada doing? Still looking to see if venous problems exist...still investigating equipment to image veins correctly…as mentioned by Dr. Traboulsee (head of UBC MS Clinic) on a recent radio show as to why he couldn’t accelerate his research. Still planning a double-blind randomized study where 50% MS patients have blockages and 50% of non-MS patients do not with “blinded” radiologists is no longer feasible in the vortex of world research.
How can any doctor image veins, find blockages and leave untreated. Would any doctor find angina or atherosclerosis in arteries and leave untreated? Do you have to be a rocket scientist to know a healthy circulatory system includes function of both arteries and veins?
Even the latest scanning techniques do not always show vein abnormalities...the true test to find and open restrictions is via a catheter.
The latest 2.4 million dollars awarded by MS Society for “imaging” will probably turn out to be a stop-gap, superfluous red herring. Dr. Traboulsee pointed out that he has funds to study veins but no research money to treat them. Even more hopeless is when his research partner, Dr. Knox, admits she doesn't know how to test patients to see if they have blocked veins which “may or may not be related to MS.” It is so indescribably sad to note other doctors are applying their knowledge and training new doctors while Canadian authorities are still trying to find similarities or the proper equipment.
Lesson 8: Most importantly, true CCSVI research really begins after the venoplasty. Currently, foreign clinics can only make initial observations and the patient is gone without the opportunity to study long term evaluations of improvements. They are shortchanged in their ability to report their clinical data. What if, there is restenosis? What exercises help to restore normal activities? Is medication to be continued? What after care is available with family doctors? How can medical documents to be shared in professional communities?
Lesson 9: A special thank you to Dr. Moguel. His reputation as one of the world’s top cardiovascular specialists is well deserved. He worked to open stubborn veins for as long as he could and stenting was an option only in the most difficult cases. The procedures were scanned, documented and will be shared as reports within the medical community. He attended one of the group suppers to see "patients getting healthier and being happy." What a special opportunity is being missed by Canadian doctors!
Special gratitude is given to the other doctors, nurses and technical assistants who applied rigorous testing, procedures and understanding to their foreign patients. Who would dare cast the first stone that the Mexican health system is lesser than ours because they are not restrained by bureaucratic mazes to prove constricted veins even exist? The doctors found 100% of MS patients had vein restrictions of one degree or another and did something about it.
My brother, Matt, is now walking without a cane…and our little town is impressed.
Lesson 10: As you can see, the journey opened more questions than answers. There was nothing observed that first-class Canadian doctors could do as well with the greater benefits of proper clinical follow-up and a chance to celebrate a return tohealth. Ten years from now, with exponential growth, more formalized training and maturity of technique, these foreign clinics will probably continue to lead the research. Our country has fallen behind the learning curve, not because our cardiovascular surgeons and interventional radiologists aren’t also brilliant, capable and eager to learn. Other countries understand that it is the entrenched neurologists with non-adaptive mindsets and non-medical MS Society directors who have appointed themselves guardians, allocate research grants, influence decision makers in order maintain nice salaries with approved drug therapies.
I felt embarrassment, not pride, in trying to explain why an advanced country like Canada is discriminating against its own citizens. What is wrong with our society as a whole when Facebook and YouTube become a medical source of information? How has this severe medical reversal happened…when patients need to gather clinical evidence to show their doctors how new scientific discoveries work…instead of doctors “doing no harm and helping their patients.” Stop this hunkering down mentality imposed by neurologists and non medical lobbyists that Canadians must cross this "experimental, controversial territory" by themselves. This is not a competition. The MS Society must back off playing “house doctor.” Canadian vascular and interventional specialists deserve better. Canadian citizens deserve better. World wide science and advancement and co-operation will make our world a better place and our right place in it.
PPS: Dr. Traboulsee ...something else to add to your research data file. My twin brothers had CCSVI treatment in Mexico. Now both are thinking about starting a local contracting business versus possible institutionalizing for one brother. How would your “wonderful drug therapies and stronger ones yet to come” stand up to this CCSVI therapy? sincerely, Mary Berukoff
Photo courtesy of Danial Neil