Someone on one of my facebook groups posted this today and I thought it was an excellent ‘tutorial’ on reading MRIs and recognizing the patterns of all sorts of diseases and disorders.

It’s called Radiology Assistant and this is the direct link to the page on multiple sclerosis in neuroradiology . It’s published by the Radiological Society of the Netherlands.

Perhaps I should send this to neurologist #3 . . .

The day after the photo of me holding the image of my jugular veins appeared across the country, I received an e-mail from Toronto. I was asked if I would be interested in being involved in educational forums related to the drug I’m taking. They noted that I had a blog and that I had written about Tecfidera. And it was obvious that I wasn’t averse to media.

I will be telling my own MS story and experiences with MS, as well as my choice of medications. Or course, I will talk about the other things I’m doing to try to manage the disease.

On Friday, a film crew from FlashFrame Digital Media will be at my house to shoot an ‘inspirational video’ of me and my life. I had a bit of fun reading their blog . They look super professional and I’m quite excited that they’re going to do a great job.

Then the following Wednesday, the video will be shown as part of the educational forum in Surrey. I’ll also be presenting my story in a different way and people in attendance will be able to ask questions of me and Dr. Devonshire. I haven’t seen the outline/agenda for the event yet but it’s in the works.

My hope is that I can share my story and have an impact on people. We’re all on a similar journey but our experiences are as unique as we are.

One year ago today, Daniel and I walked upstairs from my hospital bed to the MS Clinic for my 1:30 appointment with neurologist #5. During the interview I had many bouts of pain in my face up through my head and each time one hit me, I stomped my foot and flailed my arm. But I was eager to answer all his questions and get the official diagnosis. He did a full head-to-toe neuro exam but I don’t recall anything being observed and his report states that there was nothing remarkable other than the facial pain.

He told me he hadn’t been able to view my MRIs as they had been archived. (This is what happens when the ordering neurologist doesn’t look at the images.) He had put in a request to get them but he wouldn’t be able to see them until the next day. I had my CD copy of the MRIs with me and we loaded them onto a computer. He was able to identify old lesions that indicated I have had MS for some time. With relief, I said, “So, the diagnosis is official?” and he said yes.

It took over a year from when I told every doctor I saw that there was something wrong with my body to get an official diagnosis.

One year ago today, I was cancelling an appointment with Myrna, my psychologist. I had managed to move my December appointment at the MS Clinic to a day that week. I left her a message and she called me back because she could hear I was in a lot of pain. She told me it was inhumane to leave me at home alone in pain. She suggested I get some help but I had no idea about where I could get help because I had been so unsuccessful with neurologist #3 and I had been into ER on the weekend and they just gave me drugs. I told her that it would be just better to put me down because we put animals down when they’re in that much pain. She asked me for my GP’s number and called her. Then she called me back and told me to get into a cab and go to my GP’s office because they were going to admit me because of a risk of suicide. To be honest, I wasn’t quite suicidal yet but I couldn’t see how I could get out of pain. I was trapped in my body and had nowhere to go.

At my GP’s office, I had several bouts of electric shock pains up to the top of my head. I fell to my knees sobbing and screaming. My GP asked me which hospital I wanted to go to. I thought about VGH first but then realized I had an appointment at the MS Clinic at UBC the next day and it would be easier to just go to UBCH. That’s what I did. I got in a cab and went all the way out to UBCH and hoped that somebody there would be able to help me.

I was afraid that nobody would believe me but I couldn’t function and I was in so much pain. At this point I was not too keen on hospitals or doctors considering I had been laughed at, dismissed as a psychiatric case, treated as though I had an eating disorder, and even told by neurologist #3 five weeks beforehand that I did not have MS.

It was at UBCH that things finally turned around for me. I had the great fortune of meeting Dr. Perry who was interested in pain. And he had the good sense to call a neurologist to assess me, instead of a psychiatrist. Dr. Silke Cresswell made a persuasive case to admit me there at UBCH and fortunately, Dr. Perry had a bed available on his ward. He graciously gives Dr. Cresswell all the credit as my ‘ray of hope’ for her thorough and professional assessment.

Their support made a huge difference and they were our first rays of hope in our traumatic struggle to get answers. Not all neurologists are created equal.

Thank you Dr. Cresswell. And thank you for calling me a “pleasant patient” in your report.

I pulled this diagram from Medical Neurosciences at the U of Wisconsin as it illustrates the complex and broad function of the vagus nerve (cranial nerve X or the tenth cranial nerve).

I had pain in my heart (called heartburn when in the hospital, although I did not agree with that description — I couldn’t argue with Doctor M), I had trouble swallowing (esophagus), I had trouble digesting fats (liver), I had food sit in my stomach for a long time (gastroparesis) that I would taste hours later, especially when sleeping. I lost my ability to defecate on my own (colon).

MS is a terrible disease. It seems to me that if one of my doctors had actually listened to me, they would have been able to diagnose the lesion affecting my vagus WITHOUT an MRI.

Two years ago, In addition to my facial pain, I had serious problems with my digestive tract — swallowing, regurgitation, constipation, gastroparesis, reflux. The weight loss led to hospitalization.

One year ago, I had a rapid exacerbation of my facial pain. The pain also led to hospitalization and where I finally got officially diagnosed with multiple sclerosis.

I wanted to see the MRI images in greater detail than I could see with the CDs I had ordered. So, yesterday, I met with the neuroradiologist at VGH who reviewed my first MRI from May 2012. At that time, he had been instructed to look for problems at the right side where the nerve root is. He didn’t see a problem there but reported on demyelination.

The images in the radiology viewing rooms are remarkable in their detail and clarity. I snapped a couple of shots with my camera so I could post them.

(If you’re really geeky — like me — and want to see what the real brain looks like in slices, there is a really nice website from UBC neuroanatomy with images taken at UVic .)

This is an image of a slice through the pons. You can see that the right-side lesion (circled in red) is larger, as there are at least two lesions there. The one on the left side (circled in blue) may account for the facial numbness I experienced in 2005. I do have some sensitivity to cold in my upper left molars that could also be associated with it.

This photo is a lower slice, through the medulla. The lesion there is large. This is where the vagus nerve originates and this would probably account for the gastrointestinal problems I had.

The neuroradiologist there is also a Dr. K and he was very nice. He invited me to contact him again if he could help.

I seem to have good experiences with doctors with K names!

Maybe I’ll call him Dr. K-3.

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.