Update on CCSVI

My mother is back from LA and her CCSVI procedure. The surgery had an immediate impact on her vision, the “MS Fog” lifted and her flexibility seemed better. Balance and other internal issues remain unchanged. The surgeon suggested that the full impact of the procedure wouldn’t be felt for a few months. So, we are monitoring her symptoms with fingers crossed.

The clinic my mother used is performing thirty CCSVI procedures per week (seventy five percent of the patients are Canadian). Our hotel had at least eight CCSVI patients.  Unbelievable!

We learned a lot about CCSVI and I wanted to share in hopes of clearing up some confusion:

• CCSVI (Chronic cerebro-spinal venous insufficiency or constricted veins) is believed to be a disease separate from MS.
• The CCSVI procedure helps symptoms directly associated with CCSVI not necessarily MS. Many CCSVI and MS symptoms are similar. CCSVI may be part of the reason why MS develops? There seems to be a bit of “chicken or egg” debate brewing.
• The CCSVI procedure is a vein angioplasty. Balloons are inserted via catheter into the constricted veins, inflated to stretch the vein, and then “deflated” and removed.
• At our clinic, stints are used in only three percent of patients.
• The idea is that the inflated veins promote better blood flow and therefore relieve some CCSVI symptoms.
• Prior to the surgery you must have an MRI specifically an MRV (which follows a very strict protocol) to review the health of your veins. In my mum’s case her jugular veins were completely collapsed on one side. You should receive a DVD of your MRV along with a DVD of your surgery showing the improvement in blood flow.
• The procedure is not perfected by any means. Veins are like elastics, they have memory, once stretched they want to revert back to their original form. To that end, many patients experience a re-occurrence of their symptoms, as their veins revert a few weeks after the procedure. The ultimate “cure” may be vein valve replacement.
• Advancement’s are happening with every procedure. Surgeons have now learned that inflating the balloons to the extent of tearing the inner lining of vein helps reduce the chance of the veins re-collapsing.
• The MRV cost twenty five hundred dollars and the CCSVI surgery costs eighty five hundred dollars.
• There have been many miraculous stories associated with CCSVI along with many disappointed patients.

I can offer no scientific data on CCSVI. My family is learning as we go just like the rest of you. Hope the information helps and good luck to anyone who is considering the procedure.

Canada Not "Open" to CCSVI

Wolfgang is a value-based company. That means that our four values – accountability, open, teamwork and win/win – form the basis of everything we do.

When we interview a potential employee we look for alignment on our values.  No alignment, no job. If a job goes sideways we fix it, at the expense of profit, because we are accountable. We have left work on the table because we felt that the customer was not interested in a win/win relationship.

Of our four values, I am most proud of “Open”. It can be a challenging, but we work hard to remain open to new ideas, opportunities and feedback. I believe that our open-minded approach to business is the main reason for our success to date.

Whether in business or personal, I am always frustrated when I witness narrow mindedness in action. Case in point, an MS/CCSVI seminar I attended recently with my mother.

My mother has MS, she is dong well, but her quality of life is compromised.  The CCSVI procedure, which involves the widening of constricted veins, offers hope for MS symptom relief. The Canadian Government, Canadian Neurosurgeons and the Canadian MS Society are lagging far behind the rest of the world when it comes to accepting CCSVI.

While not a cure, data from around the world is mounting that CCSVI offers MS patient’s symptom relief. Recently, I read that seventy five percent of MS patients show vascular constriction on their MRIs. At the time of the seminar, three thousand people worldwide had completed the procedure and two thirds of the patients experienced an improvement in their MS symptoms. Interestingly, two thirds of MS patients using drug therapies report symptom improvement.  The drug therapies have harsh side effects, there are no serious side effects reported with CCSVI.

According to the presenters at the CCSVI seminar some of the drug therapies cost the Canadian health care system as much as $40,000 per patient per year. The CCSVI procedure would cost $3000 per patient.

My mother knows personally at least ten people that have completed the CCSVI surgery. The vast majority experienced symptom relief. My friend, who suffers from MS, had the procedure completed in December. Since the procedure he is feeling better and I can tell you, he looks stronger, less fatigued and more mentally alert.

US, Poland, Mexico, Italy, Israel, Egypt are all offering the procedure yet Canada is holding back.  Canadians with MS are flying around the world to have the procedure completed. Why? The answer is that Canada health care system is waiting for results from their own studies to confirm to that CCSVI is viable.  It seems that Canada is not “open” to accepting data from studies around the world or from the three thousand patients that have had the procedure completed. Stubborn arrogance, very frustrating!

My mother is flying to California at on Feb 6^th, to have the CCSVI procedure completed at a private clinic at significant expense. My sister and I are going with her. CCSVI is not a cure, and my mom is not expecting to walk away from the surgery table symptom free. She is simply hoping to feel better.

My mom should be having this surgery in Vancouver, without hassle, and with her family and friends there for support.

At the CCSVI seminar it was announced that two class action lawsuits are commencing. Maybe the bad press and the fear of multi-million dollar settlements will force the Canadian health care system to become more “open”.