CCSVI Follow-Up: Niagara Falls & Ultrasound Jelly

Something I've always known that I was going to have to do was travel for my follow-up care.  I knew that I wouldn't be getting any from my MS neurologist here in Winnipeg and asking my family GP would be utterly useless as well, knowing where they both stand on the topic of CCSVI. So when Dr. Sandy MacDonald was granted IRB approval to conduct observational studies for Canadians who traveled abroad for treatment, I knew I wanted to go to his clinic.

As I told you a few blogpost past, I had an appointment booked at Barrie Vascular Imaging in Barrie (obviously) Ontario at the end of April. Being that I live in Winnipeg, we had to fly into Toronto and drive the hour north up to Barrie for my Friday morning appointment, so quite a long haul for a single appointment.  Sheldon and I actually flew into Toronto on a Tuesday night, where we rented a car and visited Niagara Falls / Niagara-On-The-Lake before heading up to Barrie for the scans on Friday. (Might as well make a little trip out of it, right? Niagara Falls has been on my to-do list for a while now and I thought this was the perfect opportunity.)

Niagara Falls, Ontario, Canada

Maid of the Mist boat ride, Niagara Falls

My appointment came on Friday morning and we had no problems finding the little clinic. Being that it' a vascular imaging center and wasn't actually useful to MS patients before the discovery of CCSVI, there were many people there for lots of different reasons. That being said, I filled out a bit of paperwork and was seen right away. Unfortunately Dr. MacDonald himself wouldn't be seeing me, however I feel like I got the next best thing: Dr. MacDonald's technologist and chief vascular sonographer, Angela Lagace. Angela was absolutely wonderful. She was welcoming and talkative - wanting to know where we traveled from and how I've been feeling since. She told us that they still see around 10-15 CCSVI patients daily! Mostly people like me, just wanting follow-up at different intervals, but also seeing new patients every once in a while too (new meaning people with MS who may be curious to see if they have blocked veins before considering treatment).

Angela was trained by Dr. Zamboni and his team in Italy in early 2009, then went back to Italy later that year to teach. Since then, she's also taught various centers in the US and some in Canada on the protocol for CCSVI techniques. The ultrasound I got that day cost $250 and took about 15 minutes.  The jelly was cold and disgusting and was put all over my neck and face. She scanned both sides of my neck and the side of my face, laying down and then sitting up at 90 degrees. She said she'd be sending the results to my doctor in California, but could also forward me them to me if I wanted. Of course I wanted.  She also warned that the results would consist of a bunch of mumbo-jumbo I may not understand, but that the last couple lines would be the most important. It would either say either NORMAL or ABNORMAL.

Now before I get to the results, I wanna explain how I was actually torn between which results I truly wanted to hear. You might think I'm crazy 'cause who in their right mind wishes for abnormal results, however abnormal explains a few things that normal doesn't. Abnormal could explain my flair up over Christmastime... abnormal could explain my muscles spams back a few months ago... abnormal could explain my random muscle weakness... Abnormal could explain my I'm never 100%. Normal wouldn't explain much.  Normal would mean that my veins are exactly where and how they are suppose to be.

Well my results were normal.

No evidence of DVT (deep venous thrombosis).

No venous insufficiency is noted in the internal jugular veins at 0 or 90 degrees.

Negative values for cross sectional areas of the internal jugular veins.

Normal valvular B-mode.

No Zamboni criterion met, study negative for CCSVI.

I'll admit I don't know exactly what all of the report meant but I got the gist of it - nothing has changed since I was treated. I'm happy with those results for one reason: I don't have the blocked vein odds working against my favor. Did CCSVI cure me? Probably not. Do I regret it? Not for a second!

Standing outside Dr. Sandy MacDonald's clinic, Barrie Vascular Imaging

I'll be traveling back to Barrie for my one year follow-up.

H. xo

MS Walk Number Five: Complete!

If you're friends with me on Facebook, you probably already know that I've been fundraising for the MS Society's MS Walk, as I do every year. Well that walk happened this past weekend, May 6th, and once again I was blown away by the amount of money I was able to raise.

Being that it was my 5th year participating in this event, I needed wanted to take a more relaxed approach. I realized that people needed a break from donating as much as I needed a break from fundraising. When every day you try your hardest to forget you have MS, fundraising is rough because it's a constant reminder. That's why I needed a little break. I also didn't want to pester my family with incessant requests for donations as they were quick to help me out with the cost of my very expensive procedure back in the fall.

Nevertheless my lax attempt did me well. I totaled in at $4355.00, putting me in 2nd place for Top Manitoba Fundraisers. The team I walked with hauled in a grand total of $25,984.00 (with funds still rolling in) which I'm happy to say made us the top Manitoba team. Way to go, MASS SYNERGY!

I say it every year: that I don't plan on participating in next years Walk, but when the time comes to sign up, I'm drawn in every time.  I've been mad at, and skeptical with the MS Society in the past but realistically, they're our number one means of promoting awareness, funding research and providing resources to anyone living with the awful disease. They may not have fully satisfied customers since the CCSVI discovery and their promptness in dealing with the news, however how would we realistically end this disease without them?  For now, I'll continue doing what I've been doing for the last 5 years. We'll see what happens next.

MS Walk 2012 - A big THANKS to all my supporters!

H. xo

The Gilenya Experience

I felt like I hadn't been doing everything in my power to control this disease. Yes, I was eating healthy. Yes, I had gone for the CCSVI procedure. Yes, I was seeing a naturopath and taking dozens of vitamin and supplements daily. I had seen some benefits initially after CCSVI but when I started to see symptoms reappearing after a few months, I started to panic. All I could think of was that my doctors were right all along. I was crazy for refusing all MS drugs. After my rant in the fall about risk vs. benefit with all MS drugs, I felt a little stupid for even reconsidering. These drugs are very harsh on the body and come with multiple side effects. I myself have had anaphylactic reactions, swollen lymph nodes, and constant UTIs while taking certain ones. But once my symptoms started coming around again and the disease was once again becoming loud and unpredictable, I found that I was second guessing my decision to turn my back on western medicine so soon. I felt at the time that natural medicine was something I had to try and if it worked, it worked. Many people have claimed that MS progression can be halted or ever reversed with a strict diet and specific vitamins/herbs and naturopathic medicine has worked for many different kinds of conditions, so of course it's something I had to try. I'll forever continue to eat as well as I can and of course take any vitamins, minerals, herbs or supplements that may work in my favor, but right now I've made the decision to not give up on my neurologist as long as she thinks she still has something to offer me. And her suggestion was the first-ever oral pill, MS drug called Gilenya. 

I am my neurologists first patient on Gilenya, meaning I'm also the first Manitoban on the drug. After I told her that I'd be willing to give it a try, she literally had to put things in place just to get me started. In order to get approved for the drug, I had to go through a handful of appointments. First, and just like any of the other drugs I've taken, there's the seemingly litres of blood that I have to hand over for testing. Liver enzymes and function is a concern and will be monitored throughout the use of this drug. I have to see an optometrist that has been hand-selected by my neurologist who has been familiarized with the drug and the potential that I can developing macula edema while on it. There's a 0.4% chance I will develop this in the first 3 months, however it may also be able to be reversed it caught early enough. There have been reports of hair loss, acne and weight gain (ugh!!). There are also more significant life-threatening problems that could result from getting cold sores while on the drug (don't get 'em) or from catching chicken pox (had 'em when I was younger). I will have to have an EKG to ensure I have no arrhythmia or other heart problems. Now the best part, I will have to take the first dose at the hospital and remain there for 8 hours afterwards because there is a potential that my heart rate will drop so significantly that I'll need medical assistance. I'll be continuously monitored (mind you, by nurses who've never dealt with the situation or the drug before) and if my heart rate starts to drop to below 55 beats per minute, I'll be instructed to run in place to keep it up. Now I don't know if it's just me, but any drug that can inadvertently have that sort of effect on a persons heart is reason to be freaked out!

My bloodwork and other required testing happened very quickly and results came back with no concerns. The only thing left to do was to book my initial dose appointment.

I went for that appointment at 8am on Jan 27th at the Health Science Center and I was absolutely terrified. I guess I'll mention it now that 11 people have died from this initial dose and the 48 hours that follow it. It's a known fact that the drug will slow down a persons heart rate, but after 48 hours it should return to normal pace. I believe the deaths have happened during trials and since, in the 48 hours after initial dose. The heart will just stop. So needless to say why I was all but sh!%ting my pants that morning! Once again, Sheldon held it together for the both of us. (God love 'em - what would I do without him?!) Once I got to the hospital, they set me up in a semi-private room with a bed. The nurse came in and took my initial vitals then passed me a little white & yellow pill and nonchalantly gave me some water. She clearly wasn't briefed that I could DIE today! I don't know what I expected, but I put on a brave face (since I clearly forgot to put on my big girl panties that morning), gave Sheldon a 'look' and tossed it back. Bottoms up!

This is a picture of us in the hospital room right after I took the pill.

The nurse then left the room, saying she'd be back every hour to check on me. Sheldon and I just sat looking at each other, almost waiting for something to happen. It never did. Eight hour came and went, I read Ellen DeGeneres' new book cover to cover and my heart rate didn't go below 56. Then we were sent home. The next day I had some chest pain, that looking back was probably due to the stress of the situation.  I went to the ER that night just as a precaution and my vitals and EKG were all fine so they sent me home. I couldn't help but be worried and didn't want to be too cautious considering the circumstances.  Any time I've had any chest pains since starting this pill, I've gone to the ER, only to be sent home after a perfect looking EKG. It still worries me but I've relaxed a lot compared to the beginning weeks. It's now been over three months that I've been on Gilenya, and I've only really experienced a bit of weight gain (which is annoying but on the minor side in the big picture). I'm now due for my 3 month bloodwork and optometrist appointment this week. I don't want to jinx anything but I've been feeling alright lately. I'm still not able to forget that I have MS as it pokes its ugly head out many-a-days, but I haven't had any huge setbacks since January 27th. I'll take it.  For now I continue to be optimistic about this drug I almost never started to begin with.

H. xo

Life Since CCSVI

Today I got an e-mail from Synergy asking me to complete my 6-month 'Post-Procedure Research Questionnaire'. This is a questionnaire made up by Synergy, completed by patients at the 1 week, 1 month, 3 months, 6 months, 9 months and 1 year mark, post-procedure.  It's a way for the doctors at Synergy to continuously monitor their patients expectations and results, by collecting information at the specific time intervals during the course of their care, being that most people have traveled from afar and are unable a face-to-face follow-up appointment.

That being said, there is one canadian doctor who's been interested in CCSVI right from the beginning, and that's Dr. Sandy MacDonald. Dr. MacDonald is a Cardiovascular Thoracic Surgeon who works out of Barrie, Ontario. When the CCSVI story broke in 2009, he was the only canadian doctor to perform this procedure on 5 of his own patients here in Canada before being shut-down. Today, he communicates closely with Dr. Zamboni's team and other centers in the U.S. learning more an more about the condition. This past fall, he was granted IRB (Institutional Review Board) approval to conduct an observational study using ultrasound to do follow-up on patients who've received treatment elsewhere. Even though this approval doesn't enable him to perform the procedure right now, at least it's a way to track initial finding and create statistics while we wait for Canada's approval to move forward.

Which brings me to my exciting news that I actually have an appointment to see Dr. MacDonald at the end of the month. April 27th to be exact. Sheldon and I are flying into Toronto, going to go to Niagra Falls for a few days, then drive up to Barrie for the appointment. The cost of the follow-up scans come out of my own pocket (along with the cost of my ride on 'maid of the mist' - weee!), but what's another couple hundred buck in medical bills at this point. This will be my only form of follow-up care since having the procedure done in October '11.

I'm very anxious and interested to see what shows up on these scans. It seems like I haven't had quite the same amazing benefits from my procedure as many others, therefore I'm wondering if my neck veins have possibly closed back up, preventing that optimal blood flow which I had after my procedure. If they are back to their original constricted form, its definitely says something about the connection between MS and CCSVI. Personally, I don't plan on rushing back to get it done a second time quite yet (as many others have done themselves). It's not that I regret my decision to have it done in the first place, I just think that experimenting once was enough for me, and I'll be waiting until it's readily available in my own country before rushing under the knife again. I do vow, however, to do my part and become more active in pushing my government to get things moving in the near future.

As for how I've been feeling these past few months, there hasn't been any major things to report. My life is still a constant roller coaster... one that I'm constantly learning the twists and turns of... And getting better at being tossed around with a big, happy smile on my face (if you can't tell, I'm a little negative today). That being said, just because I'm having a lousy week, it shouldn't take away from the 22 days straight that I was feeling like a hundred bucks (<--that's like the smaller, pocket-sized version of a million bucks, and probably all I'll be able to attain anymore. But I'll take it, none the less!). Those 22 days were pretty awesome, I must admit. Any time I'm feeling so good, I'm afraid to think about how good I feel... let alone say it out loud. I've probably said this before, but anytime I speak it out loud to a doctor or to Sheldon or my parents, it tends to be taken away from me a day or two after. I don't know who's controlling all that "up there", but I've learned to be humbled by the 'feeling good' attitude I'm so seldom awarded.

As I've been explaining all along, neurologists (my own included) don't tend to support this new theory of CSSVI, given that it's a total paradigm shift in the way MS has been studied for many years now. Therefore, when I reported to her that I was having some pretty intense symptoms after Christmas, she was quick to push yet another drug on me, all while giving me the 'I told you so' attitude. I haven't been on any MS drugs since August 2011, which is my longest stint to date without drugs since my official diagnosis. I don't know if it was the lack of success from my procedure, the negativity I was feeling from my sudden onset of symptoms, the panic regarding my disability in the future, or maybe I was just having a bad day, but one morning I woke up with  a change of heart about the use of these disease-modifying drugs. I was scared that I was making the wrong decision to stay off all drugs only 4 years into my disease. Being that slowing down progression is the only real hope a person living with MS has, I felt like I wasn't doing everything in my power to control this disease, while I still could. I mean, Zamboni himself has stated that staying on our disease-modifying drugs is a big part in the recovery. So that's when I made the decision to reconsider the options given to me last August after my relapse, and to ask to start Gilenya, the first oral MS pill.

To be continued...

H. xo

Social Media & MS

I've been silent. But silence is golden, is it not?...

February & March have come and gone and I haven't written a post in weeks. And I love writing. Especially online. I guess it's technically called typing then, but you know what I mean. Even though I don't know who I'm writing to anymore (I hope someone somewhere is getting something from this) at least I know who I'm writing for... me! 

When I was questioning my decision to have the CCSVI procedure, I found comfort in reading about other peoples experiences. To read that they had had the same fears and reservations as myself, it helped assure that no matter what decision I made, I wasn't alone. Whether a medical professional giving their opinion on this new idea of CCSVI, an advocate for basic human rights speaking their mind on how MS patients are being mistreated and ignored, or a regular girl like myself contemplating undergoing the procedure and trying to do everything possible to make an informed decision, blogs and forums have been my savior over the past 2 years. In fact, these blogs and forums have basically been the main hub for getting accurate, up-to-date information about the goings on of anything and everything CCSVI. So now with my very own blog, I'd like to extend the invite to anyone who wants to contact me privately to chat, vent or ask questions regarding my own CCSVI experience. My e-mail is hdslaney@gmail.com. 


The MS world has united online in a force so big it is literally replacing the conversations being had with our own neurologists. For the most part, these neurologists refuse to provide us with information on the topic, so we turn to asking others. The patient pioneers who paved the way for the tens of thousand of MSers around the world who've since had their veins treated for CCSVI have my utmost respect and gratitude for their initial braveness. It was these earlier patients who were not only brave enough to undergo an unproven procedure, but  who have continued to speak out publicly about the greatness of it and encouraged others to have it done as well. The way we look at and treat MS is changing and with all said and done, I don't for a second regret my decision. I hope someone can read this blog and make that same decision for themselves.

H. xo

The Anniversary Of.

First off, let me start by saying that I hope everybody had a wonderful Christmas holiday, surrounded by family, friends and loved ones, and that the New Year is as refreshing for you all as it is for me. 

Speaking of, why is it that a new year is a new sense of optimism for so many? Quite frankly, it's just another day, but for me a new year is like turning a new leaf. It's the hope that this year will be better than the last. It's putting last year in the past, and moving forward with something fresh. Realistically, one should be able to do this any day of the week but I, like many others, need that week-start or year-start to stick to the goals I set for myself... to put the negative of last year in the past and have some hope for a better tomorrow.

So with that being said, I've put off writing this post until this particular day... January 3rd.  I didn't write during the holidays, or on the first day of the new year, but I chose today because today is the 4 year anniversary of my life with MS. Four years ago today, I woke just like any other day. I didn't feel any different laying there in my bed, but as I got up to get on with my day, with my new year, I couldn't walk from my bedroom to my living room without toppling over. I looked like I hadn't gotten my sea-legs yet... but the problem was I wasn't on, or even near the ocean!

Four year ago to this very day my life changed. My 'New-Year, Fresh-Start' definitely wasn't turning out like I expected. I think my resolution that year was probably to start eating right or working out more just like every other 23 year old I knew. Little did I know that my life would be very much unlike every other 23 year old I knew.

Fast forward 4 year - 3 relapses - 2 different types of disease-modifying drugs - 1 CCSVI procedure - and many, many tears shed... I'm still commencing this new year with new hope.

As for my condition lately, it's been both up and down.  The week between Christmas & New Years was a complete catastrophe.  Once again, my symptoms were consistent with my findings that my bad days go through 'cycles'.  This time the bad came in the form of spasticity. Spasticity is a problematic symptom that many MS patients encounter quite frequently. This can be in the form of involuntary muscle stiffness, spasms, jerks or twitches. It's can happen to any muscle in the body but most often the legs are affected. I've never had spasticity issues before, but during that week I had extreme contractions in my right thigh muscle.  This is worrisome to me for a couple of reasons: first being that it's usually the left side of my body that has symptoms, and secondly, the appearance of a new symptom in general is very displeasing.  The contracted muscle was so tight that it could be seen on my thigh and was rock solid to touch.  Sheldon spent many hours trying to rub the tight muscle out, to no avail.  It was so uncomfortable that I couldn't even sit still without fidgeting, let alone sleep at night. I haven't talked to my neurologist about this new issue but Google says that there are a couple different muscle relaxants that are specific to treating this symptom in MS patients. It went away after about 6 days so I'll put that issue on the back burner until my next appointment, or until it returns... whichever comes first.

I'm up to working 8 hours days this week. It's been a slow process getting back to full-time work but I think the 'gradual back' was a good call on the part of my neurologist. It was also nice that a portion of this process fell over Christmas break. I didn't take any time off and went to work Monday through Thursday, even though no one else was around. It was nice and slow, and very little was expected of me which was perfect during that week of pure agony with my quad muscle. 

With the new year off and running, and as I try to get through the darkness of anniversary that comes with today, I leave you with a few fresh words for your day... and possible for your new year:

Hope is looking forward with confidence, even in unsureness.

Hope helps us deal with the unpredictability we must face from time to time in our lives.

Hope stays with us and heartens us when our options appear limited.

Wishing is passive whereas hope takes effort.

Hope remains open to all the possibility, including the possibility that things may turn out other than you imagined and can still be OK.

Hope is not just something you believe in or feel or do. It involves believing and feeling and doing, and much more.

It includes every part of you - your mind, body, heart, and soul.

We hope because it is essential to the quality of our life - as is breath to our existence.

When we hope, we are willing to get up one more time than we fall down. 

 

H.xo