I had the great pleasure of meeting Dr. Wahls at a conference held here last month, sponsored by the Canadian Neurovascular Health Society .

As soon as I heard she was speaking, I signed up. According to the conference organizer, I was the very first person to register. (For a nice summary of the conference, Joan Beal wrote up a post about it. Of course, that was another thrill for me — the chance to meet her! She is a true champion and very smart woman and I was really glad she attended.)

The day before she spoke, I found myself face to face with Dr. Wahls. I desperately wanted to know how to get across to people with MS that it’s worth trying her diet. She told me that I just need to accept the fact that some people are so attached to their foods and habits that they will resist. The best I can do is to encourage and set an example. But it continues to be very difficult for me to watch others in the MS community in decline while I continue to improve. No fatigue, able to work out, able to see clients again . . . I want this for everybody.

It was wonderful for her to have the chance to continue spreading the word about her own amazing story and others’ successes by following The Wahls Protocol.

After the talk, Dr. Wahls had a book of The Wahls Protocol signing in the hallway. I had mentioned to the audience that we have a Wahls Protocol Support group in Vancouver, and I encouraged people to talk with me if they wanted more information. When I went out to the book signing, there was still a long lineup. I waited until the end so that I could talk with Dr. Wahls.

Dr. Wahls was so generous with her time. She answered everybody’s questions thoroughly. I first mentioned to her that I had been in Marshfield, Wisconsin at the same time that she was there. She was a physician at Marshfield Clinic and I was doing my clinical fellowship.

I talked to her about the drug I have been taking for two years. The natural way to promote the antioxidant NRF2 pathways is through diet, exercise and stress reduction — all parts of The Wahls Protocol. I considered the side effects — which for me, were minimal — the recent cases of PML, and the recent discovery of the lymphatic system existing within the brain. After discussing a bit more with my husband, I decided to discontinue Tecfidera.

I bought another copy of her book and had it autographed. I’ll use this as a fundraiser or a gift for members of our local support group. I was really pleased to see how many of our group who attended the conference.

I left the conference early as there was election work to be done . . .

I’ve had many questions asking me about how I’m doing since my surgery or venoplasty. In general, there are two significant changes.

The first major change is the reduced level of fatigue. I haven’t “hit the wall” once since coming home. Today, I was outside working a bit in the garden (in the rain) with Daniel for the first time in years. This was after a morning at the farmers market.

The other most significant change is warmer hands and feet. Sometimes it surprises me that they’re warm at the end of the day.

The recent good MRI was only one month after the procedure, so it can’t account for that good news. But I’ll take any good news for my health.

On Monday, February 3, Daniel and I flew to Newport Beach in Orange County, California. In preparation for the trip, I had supplied samples of my saliva for analysis. I kept a journal of the food I ate every day and took my temperature daily at 11:00 a.m. We settled in at the Fairmont Hotel, then Daniel and I went for a long walk. We wanted to find a grocery store and we were able to locate a good organic store, called Mother’s Market & Kitchen .

The next morning, we walked over to Synergy and had a series of tests, including MRI of my veins (MRV) and interviews. They evaluated my EDSS, took measures of my heart rate and blood pressure, and hooked me up to a machine that monitors my ability to sweat.

We then had an interview with Dr. Arata to discuss the procedure and some of the initial test results. The MRV showed altered flow in both jugulars. My temperature ran a little low as did my blood pressure. He said that my autonomic testing was ‘borderline normal’. My diet was good but he reviewed the importance of maintaining a focus on reducing inflammation and avoiding chronic stress. He also encouraged me to pursue touch therapies (massage, acupuncture, etc.) upon my return home to increase oxytocin.

The next morning (Wednesday) was the big day. There were three other Canadians having their procedure done and we were starting to get to know each other from running into each other in the waiting room or at the hotel. It was nice to develop a bit of a community of well-wishers and supporters.

My procedure was scheduled for about 8:30 a.m. I was sedated but conscious. I felt nothing and before I knew it, Dr. Arata asked me how I was doing as it was all done. He then went out and spoke to my husband and told him that both of my jugular veins had blockages but my azygous vein was fine. Daniel joined me after an hour, then after one more hour, I was free to go back to the hotel via the hotel shuttle.

For the rest of the day, I was instructed to rest and each time I changed position, to put pressure on the entry site at the upper thigh/groin area. We ordered room service for dinner — that’s the first time these frugal Canadians have ever done that!

The next day (Thursday) was the follow-up testing, a repeat of all the tests done on Tuesday. My systolic blood pressure was over 100 for the first time in a long time.

They also changed the bandage at the puncture site.

We met with Dr. Arata before I had the follow-up MRI and I will get the written descriptive report soon. (I have a DVD with images but haven’t figured out how to post them here yet.) We reviewed the next phase of my recovery. He said that the only things I can control are what I put in my mouth and what I put in my mind. He had suggestions for both. He encouraged me to remain on Tecfidera because of its antioxidant properties. And he suggested I take up yoga or tai chi.

The last thing we did before leaving was to have the follow-up MRV. I was able to lie in there with my eyes open. Claustrophobia? Yup, it’s gone now.

I don’t really know why I have been procrastinating on writing on this topic. I got a little nudge today from a friend who is curious about the experience.

First of all, I want to make it clear that I know there is still some ‘controversy’ with the procedure I had done, especially how it has been reported in the Canadian media. There is only one journalist who consistently avoids the sensationalistic language, yet most haven’t read her work. I encourage you to read this piece by Anne Kingston in Macleans .

After determining that I did have some visible alteration in the flow of my jugular veins, my husband and I spent a lot of time thinking and learning more. After viewing a talk given by Dr. Juurlink , my husband — a mechanical engineer — was most impressed with the fluid dynamics concepts that he spoke about. Most doctors do not study fluid mechanics and most engineers do not study the human body.

I understand enough about how the body works to know that good circulation is vital to nourish and cleanse our cells. The basic concept of good blood and cerebrospinal fluid circulation for a healthy brain makes intuitive sense to me.

I have read a lot of the blog written by the champion advocate Joan Beal, whose husband has made great progress since his procedure.

I also interviewed several people about their experiences, including the remarkable Lori Batchelor . With a good, experienced surgeon, the risks are low. The potential benefit to me far outweighed the risks. After speaking with Dr. Arata at Synergy Health Concepts in Newport Beach, and determining I had what he calls ‘dysautonomia’, we made the decision to go.

My procedure was booked for February 5, 2014.

Last week, I attended a radiology grand rounds session at VGH on CCSVI in MS, titled “Observations on extracranial venous anatomy in MS: An update on CCSVI research.”
I wanted to understand the study without the media lens that often distorts information or omits important details.

There was a great deal of collegial congratulations and pride taken in the quality of the collaborative research, leading to the publication of the study in the prestigious medical journal The Lancet .

Traboulsee’s introduction to the study was a review of the history of CCSVI from Zamboni’s work on a possible cause of or even a treatment for MS. It was a brief overview and only spoke of the initial work done several years ago and no review of more recent work being done in the US and Europe. (For a comprehensive and well-written collection of information that supports the value of venoplasty, check out the blog written by Joan Beal .)

There was a subtle dig at private MRI centres, including False Creek and AIM, under the term ‘commercialization’ which I suppose was meant to be critical of private centers being able to provide information unavailable in the public health care system. There was one unnamed centre that was praised for not “jumping on the bandwagon” as they opted not to provide an assessment service. Readers of my blog know that I wish I had gone private sooner as I would have been spared a lot of abuse . Waiting in pain for years for help was a serious failing of the beloved health care system. (One of my MS mentors believes it was because I am a woman. Unfortunately, I agree with her.)

There was a description of ‘medical tourism’ and an estimate of 3-5,000 Canadians leaving the country to have the venoplasty procedure done. The ‘perception’ of benefit was about a 50/50 split. He did say that “people have died” from complications but did say “not very many.” I have heard of perhaps three but I do know that one of the MS drugs called Tysabri has caused many more deaths (52 by 2012) and this doesn’t include drugs in clinical trials. To be honest, many of us with MS don’t always think of death as the worst possible outcome, so the value of that metric is debatable.

Traboulsee talked about the social passion of the advocates of the procedure and the information and misinformation that took place in the media.

The premise of the study was to test the hypothesis of CCSVI and if it exists. And if it does exist, is it related to MS? This is Phase I of the multi-year research and was conducted at two sites, UBC and University of Saskatchewan.

The radiologist, Lindsay Machan, spoke next. They did ultrasound and the technicians were trained by Zamboni. They also looked at blood flow using 4D Tract Imaging. (This had not been reported at all in the media and I regret having said that they didn’t measure flow in my op-ed piece.) Unfortunately, there was no real discussion or analysis of flow measures, so it is hard for me to compare with the results that I got with my scan. Dr. Raj Attariwala from AIM Medical Imaging has a degree in Biomedical Engineering and he did tell me that most doctors don’t understand or learn about fluid mechanics. I will follow up on this by getting a copy of the full article in The Lancet to assess this shortcoming of the presentation.

Machan talked about how tricky it was to view the veins as a Valsalva maneuver can block the blood flow and look like stenosis of the vein. They observed immobile valve leaflets in people with MS as well as healthy subjects.

Machan speculated that positive reports of venoplasty could be a placebo effect. I guess when you’re a radiologist who doesn’t see patients, it’s easy to believe that the ‘anecdotal evidence’ is questionable. He ended his portion with his belief that this research of blinding and double-blinding everyone involved will produce the best study in this area. It took the research team one year to develop the standardized protocol.

Dr. Traboulsee concluded the talk by summarizing the findings. There were 177 participants, 79 with MS and 98 unaffected. UBC and U of Saskatchewan found complete vein blockages in 1.5% using catheter venography images. (He compared this with 100% blockages in Zamboni’s original study but did not mention if the method for assessment was different, e.g., ultrasound.)

They then decided to re-look at the data and suggest that vein narrowing of 50% or more might give another view. They found that 74% of people with MS had greater than 50% narrowing, the unaffected siblings were 66% and the unrelated/unaffected were 70%. This was not what they were expecting to see, so they considered that it might be abnormal flow. Again, the abnormal flow for MS 51%, unaffected siblings 54% and unaffected 54%. It wasn’t clear to me exactly what they meant by abnormal flow and how they measured it.

So, what did this tell the researchers? They concluded that MR venography was not as good as their technique of catheter venography, and that CCSVI as described by Zamboni does not exist as narrowing of veins is common.

Does venoplasty affect the course of MS? Traboulsee acknowledged that it can’t be determined with this study alone and it’s why they will be moving forward with Phase II Treatment Trial. They have completed 7 procedures to date and will be following them very closely, including patient response outcomes.

I congratulate Traboulsee for saying that it would be disrespectful to ignore what many people are saying about changes and improvements. The research takes time.

Each of us with MS will make our own decisions about whether or not we can wait.

The “final curtain” on CCSVI and Liberation Therapy for Multiple Sclerosis? .

Pamela Fayerman had a longer version of her article on her blog. I’m pleased to see she questioned the comment about a “final curtain.”

The photographer wanted to take the photo with natural light by a window. I like this photo better than the one used for the print edition. Unfortunately, our dining room still looks like its last renovation in the 60s. Fourteen years in this house and we’re just about finished upstairs. My health has interfered so much with our plans and our lives. That’s how life is.

The extended article on her blog can be found here .

---

Link between venoplasty, MS needs more study
JENNIFER SWEENEY Jennifer Sweeney is a retired speech- language pathologist and consultant who worked with preschool children, young adults and seniors in the health care system and in private practice.
The Vancouver Sun
Oct 11 2013

In 2005, I had three weeks of leftsided facial numbness. In 2009, I started having some strange sensations on the right side of my face that my dentist thought could be from the onset of trigeminal neuralgia ( TN). I asked my GP for a referral to a… read more…

Well, that was cool. I am trying e-paper for the Vancouver Sun and it gives you the options of sharing stories on your blog. It looks sharp! I’ll scan the hard copy as I don’t know it this link will be there forever. It’s a nice feature. If you click on the picture, you get a view of the article as it was in print. And if you click on the ‘read more’ link you get a different display with no pictures.

I’ve had a few interesting calls from people who read the story and an e-mail this morning. I’m easy to find on a Google search and I appreciate the some people have taken the time to look me up.

My cousin wrote:

Jennifer, thank you for writing that article. I am sure it was difficult but it is very enlightening and could help others who are misdiagnosed, as well as encourage more research . . . it is often on the backs of those who are courageous that these battles are won

I wrote back to him and joked that there is a fine line between courageous and stupid.

And a dear friend wrote to me and said I was very brave. That meant a lot to me.

Yesterday, a photo of me holding this picture of my jugular veins, was on the front page of the Vancouver Sun, and again on the front page of the next section. In the article, I had been quoted along with a short bit about my diagnosis and recent MRI to assess my veins. I got an e-mail from a friend in Calgary who saw it and several facebook messages from people who were glad to see my smiling face and were sorry to hear of my diagnosis. I used to be very active and I knew a lot of people but I have not been able to do the things I used to do.

Many people asked me how I managed to make the media contact. It’s all about timing and you never know what opportunities may cross your path. This time it was the same type of coincidence that led to my favourite media piece ever, the CBC interview with Shelagh Rogers .

I contacted Pamela Fayerman, the Vancouver Sun’s Health Issues reporter, on the weekend as I hoped she could do a story on trigeminal neuralgia as Monday was the first International TN Awareness Day. I was late in getting around to it but I felt an obligation to the TN community to at least try as there had been a really good article on TN in the Victoria Times Colonist.

A friend and neighbour who has been involved in some great health initiatives for cardiac care gave me Fayerman’s contact info and I sent her an e-mail. She responded, inviting me to call her on Monday, so I did. We had a nice conversation and we talked about TN and MS and she asked me what I thought about the ‘liberation therapy.’

I’ve just started looking into it knowing that I have the blood flow problem. While we talked, she asked me if she could quote me. I was happy to do that. Then she asked me if I’d be OK with a photo and the next thing I knew Ward Perrin was on his way to the house to take my photo. He used to live in the neighbourhood and he knew the people who sold us the house. While he was here he asked me if they gave me any copies of the scan and I told him I only had digital but I could print one up and see how it looked. He thought it was perfect

Anyway, I believe she sort of misquoted me, making it sound like the Traboulsee study was making me rethink the procedure. I let her know what I thought but she didn’t agree with me, as she says she portrayed me as being in a contemplative stage, and that’s true. I told her I generally liked the piece and really liked the way she ended it.

What I do like is seeing my name right beside Traboulsee’s face. The major irony around all of this is that I requested a referral to Traboulsee in February of 2010 for TN and he turned down the referral because he was limiting his practice to MS. If he had accepted the referral, I likely would have been diagnosed with MS back then. Instead I saw a young man who lied to me about my serious drug reaction, who told me that my left arm numbness was ‘normal’ and wrote a report that omitted all of that information. I refused to see him again.

Fayerman also invited me to make a pitch for an op-ed for publication on Friday. I submitted it yesterday and it looks like it’s a go — unless of course, other big news bumps it.

You’ll see the photo of my jugulars again.

After meeting Lori Batchelor last month and thinking about the logic of having good blood flow for a healthy brain, I decided to go to AIM Medical Imaging to see whether or not I had narrowed veins. I had heard that Dr. Raj Attariwala was the best diagnostician in Canada, so I booked an appointment for September 30.

The McMaster Study showed only one person with MS who had CCSVI out of a hundred. I was eager to challenge that finding as I suspect that many people who do not have MS also have CCSVI. And if it’s only 1/100 for people with MS, then chances were slim that I would have it. It was interesting to note that they were looking specifically for vein blockages, not reduced flow or backwards flow/reflux.

Immediately after the scan, I had a consultation with the radiologist, Dr. Attariwala. I had given him copies of my previous MRIs to look at. Fortunately, there were no new lesions or active lesions. He was able to identify the lesion in my pons from the very first MRI in May of 2012. (I wish I had paid for this MRI two years ago as it would have helped guide me better than all the specialists I saw and tests I had. It would have been faster and cheaper and I probably would not have ended up hospitalized twice.)

Within a couple of hours, I had images and results. My right jugular vein flows significantly less than my left. This is the opposite of the findings at McMaster where everybody had greater flow in the right than the left. He says that this is a finding that has been “known for years.”  (from extended interview with Dr. Rodger )

The central vein is called the ‘azygos’ — it was described to me as ‘awful’.

So, it appears to me that I do have CCSVI or chronic cerebrovascular insufficiency according to these images and flow measurements. However, I am not knowledgeable enough to know or assess if I meet the full criteria for CCSVI. This is how it was described in the report:

INDICATION: History MS, query jugular venous narrowing.

TECHNICAL Conventional study: axial flair, T2, 3-D space flair, post gad T1sagittal T1 , PD, axial T2 C-spine.

Research: SWI, Venc, azygous, with subtracted multi-sequential venogram through the neck and lower head,

FINDINGS: The patient recognizes that jugular MRI venogram as well as iron deposition sequences remain in the realm of research . . . Known MS demyelination, without MRI evidence of active lesions. To be determined by ongoing research; there is associated substantia nigra iron deposition which is of uncertain significance. The jugular veins demonstrate asymmetry of flow, with the right being diminutive, with transient halting of flow, without reversal. These findings plus the controversial nature of the research component of the study was discussed with the patient.

In the images, I received a graphic representation of the flow measurements taken.

The red line represents flow in the right, the green line in the left. If the red line were to go above the horizontal line at 0, it would indicate backflow or reflux. So, the next step is to investigate further.

There are so many unanswered questions about the procedure and I’m not convinced that some of the research currently being conducted is going to lead to good answers. Most of the research has been looking for gross measures of correlation between blood flow and ways to measure it and assess it, then make pronouncements about the lack of connection with MS, end of story!! For people with MS who have benefited and thrived after the procedure, it has clouded the debate. So many people are looking for a way to end this area of research, calling it a social media phenomenon of unsubstantiated anecdotes. But they are choosing to ignore evidence right in front of them.

I think we need to ask better questions. What’s happening when people get good results from venoplasty? Why aren’t we studying them? Why is there no single-case research being done on an amazing case like Lori Batchelor? Her neurologist is on camera saying that there is improvement when she was diagnosed with secondary progressive MS. How does that happen?

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.