The recent media frenzy around a study held at McMaster University included an excellent article on the issue published by the Vancouver Sun . I had joined a couple of facebook groups to learn more about CCSVI and I have now spoken to five people who have benefited from the procedure. I want to learn more and to try to understand what is going on in the brain. There are a lot of theories and thoughts about causes and treatments for MS. What makes logical sense to me is the concept of proper blood flow for a healthy brain. If I had impaired circulation in one of my limbs, it would be treated because there would be risk to the limb from swelling and inflammation. So why not look at the veins draining the head?

The Vancouver Sun article included a link to videos done by Lori and her husband showing the remarkable improvements she has had since her angioplasty over two years ago. When I saw these videos, I thought this is much more than a self-report of invisible symptoms. This woman has improved visibly and significantly when she wasn’t supposed to with a diagnosis of secondary progressive multiple sclerosis. The video of her first year ‘angioversary’ is remarkable because she is being evaluated by her neurologist who agrees that there is marked improvement.

I wanted to meet this woman. I asked some of my colleagues in a support group if they might be interested. So, on Friday, September 13, four of us sat down at a coffee shop and got to know more about Lori’s story and to see her in person.

Lori is really passionate about having this procedure available in Canada for all people suffering from CCSVI, or chronic cerebrospinal vascular insufficiency, as she believes it plays a role in multiple sclerosis and other degenerative brain conditions. She went to the Seattle location of Vascular Access Centers for her angioplasty. When describing the procedure, she said, “I found it exhilarating, not scary at all.”

She noticed improvements right away. That night, she was able to go to the bathroom without needing to hold on to furniture or the walls to keep herself steady. Her balance improved, and this led to her being able to walk more and become fit. She exercises almost every day — we had to arrange our meeting around her exercise schedule. She no longer has heat intolerance. “Aside from elimination of heat intolerance–from not being able to get off my bath bench after a barely lukewarm shower, I can now take HOT showers, baths, and hottubs!”

Most of the focus on neurological exams and public awareness is on the visible signs of MS. All of us with MS have a plethora of invisible symptoms. Lori described some of the major changes in her ‘invisible symptoms’ since her angioplasty:

“I also have not had one of what I called “my MS headaches” that were specifically behind my left eye–not too severe in intensity but would not fade completely for more than a day no matter how much Ibuprofen I took! I used to get these headaches a few times a month, almost weekly, but NONE since treatment 2-1/2 years ago.

“I also suffered from wildly erratic emotions–would cry at the drop-of-a-hat over nothing, and bouts of hysterical laughter–again over nothing. Any little sudden noise would startle me and I was terrified I would have a heart attack. I found this was called pseudobulbar affect (PBA) and was considered a symptom (though not-much-talked-about) relatively common in MS. It’s been fine since the treatment.

“So many other little things also improved–like not feeling sick to my stomach when turning my head–that it’s impossible to remember and list them all, but they’ve really improved my quality of life.”

You will note that she doesn’t talk about the procedure being a cure. She still has MS. But her quality of life has improved significantly.

Lori studied broadcast journalism and has a passion for getting information correct and getting information out to the public. She is frustrated with sloppy journalism and sensationalistic reporting. She had done a lot of media reports telling her story, as she is ‘walking proof’ that it worked for her. She is currently writing letters to provincial and federal health agencies to advocate for Canadian services. She is articulate and tireless. And she’s a really nice person.

What I want to know is why nobody has ordered a follow-up MRI for her. You would think there would be enough intellectual curiosity to see if her MRIs have changed since her diagnosis or subsequent follow-ups. If those neurological exams are not sensitive enough to pick up my MS after 8 years, you realize that they are very gross measures of what’s happening in the brain.

I’ll look forward to meeting up with her again.