My Second CCSVI Venoplasty

Scene from Sheraton University City, room 1126

On 27 May, 2011, I was given a second treatment for the CCSVI in my MS. My son Edward flew up from Halifax Nova Scotia to Toronto Ontario. I picked him up at Pearson and he began the drive. He drove us home to Orillia from the airport, and everywhere we needed to go from that point on. We left Orillia on Wednesday 25 May and drove arrived in Wilkes-Barre PA that evening. The next day we arrived in Philadelphia where I was interviewed by Ali Gorman of ABC's affiliate station channel 6. We were at the Peripheral Vascular Treatment Center at 4220 Market St. at 7 am on the 27th.

The staff was great. Friendly people, and very efficient. I was asked for my name and birth date MANY times that day. I had filled out all but one of the forms ahead of time so admission was streamlined. One of the nurses told us that Dr. McGuckin had trained with Dr. Zamboni in Italy three months ago. That made me feel wonderful. Dr. McGuckin introduced himself to me when he came in that morning and we engaged in chit chat. Nice guy. I was prepped for surgery by being told to change into the gown and socks (not spiffy socks like the ones at Albany!). They asked if I'd shaved myself, but I hadn't been told to do that, so one of the nurses did it. That's something that didn't happen at Albany in 2010.

There's a great deal I don't remember. I do remember being wheeled down the hall to the operating room. I remember being swabbed and swabbed with iodine in preparation. Being draped with a disposable sheet, the groin area being about the only part of me that was exposed. My head was also exposed and I was given an oxygen tube at my nose. When I went to scratch that, I was told not to, that they would do it for me, and they did in a much gentler way than I would have. Fentanyl was administered through the IV and while I was awake, I wasn't really aware of a whole lot. I was told to hold my breath a couple of times, and could feel the balloons being expanded inside my veins. I only remember a sharp pain once, other pains as well, but nothing extraordinary.

I know Dr. McGuckin invited me to look at something he was doing on the fluoroscope, but since I wear bifocals, it wasn't easy to see it from where I was. I was happy that he wanted me to see it though. I guess I was in there for about 90 minutes, but it seemed like a lot less time - most likely because of the fentanyl. I was also given my first Plavix intravenously. Clean up was brief and I was wheeled back to where Edward was waiting for me. A short while later, Dr. McGuckin came out and told us what he'd done. He had inflated five balloons. He told me the sizes but I don't remember that part. One might have been in a renal vein but I'm not sure. I do know renal was mentioned. He also mentioned something about a vein that drains the spinal cord. Others were: one in each jugular - my left had become restenosed; two in the azygos which was not treated last year either. The right jugular has shown 'no significant stenosis' in Dr. Siskin's 2010 report, which I gather meant there was a bit of a stenosis, but he was being very cautious. Understandable, since it was very early in the learning curve of the CCSVI game and so much more has been learned in that year.

Things I've noticed

My sight is clearer, my hearing in my left ear is better. Some improved strength in my left leg, but at times it's still as bad as it was. My endurance is better in that I don't get as tired out by getting in and out of the car. My balance is still the pits. Perhaps it's still early. Perhaps I have an inner ear thing going on. My family doctor automatically thinks that if one has MS, that rules out all other things, it would seem, because I had to convince him to get me an appointment with an ear nose and throat specialist when last I saw him.

I'm happy that I saw Dr. McGuckin. I know I received the best treatment available in North America, and that he's at the top of his game. I'm happy to have such a wonderful and caring son who took the time away from his exceeding busy school schedule to drive me to and from Philadelphia. I'm also glad that I had that time to spend with him, and to experience new things with him. And we got to have an authentic Philly Cheese Steak that was SO GOOD!

Leaving Philadelphia ---->

So now I wait for more improvements. I watch and hope they will come. I know that nothing will compare to the great strides I took when treated in Albany on 2 June 2010, but am sure that this time the improvements will last and I will have time to allow my body to heal. There is hope. Everyone with MS has hope now where there was none before.

We left Philly on the morning of 28 May and arrived near Genessee NY that evening. We finished our trip on 29 May, and Edward left for Halifax on 31 May, arriving at his home at about 6:45 pm

This note has only been proofread once, late in the day on 1 June.

NB: Tomorrow is the first anniversary of my first treatment for CCSVI. When I had that treatment, I had to hide the facts - where I was going and why, for fear of the clinic being shut down. Not a problem this year.

Acknowledgements: my dear son, my wonderful CCSVI brothers and sisters. Those who've been treated, retreated, and those who, in Canada, await treatment because of discrimination on the part of our government. And a big shout out to Tim Donovan and Angioplasty For ALL, and to Reba Scott for looking after dear Sadie in my absence.

Caregiving

A letter I wrote to Virtual Hospice:

My mother is 89 years old. She has extreme scoliosis from polio as an adolescent, macular degeneration and glaucoma. On 29 June 2010, she had a stroke which made it impossible for her to communicate for 2 days. She was in the local hospital for 16 days and improved significantly over that period of time. Our family: my sister, brother and I fought to have her live at home instead of in a long term care facility. I have been fighting MS for the past 16 years, but 3 weeks prior to Mom's stroke, I was treated for CCSVI by angioplasty and my MS was eased greatly. I am now my mother's caregiver and get help from my 66 year old sister when she's able, from Red Cross for 14 hours a week, and from three nights of VON PSWs who allow me to get full nights' sleep. She is at risk for a fall, so we have a motion sensor that alerts me when she sets foot on the floor, as well as a nursery monitor which lets me be aware of her condition in bed at night so I or a VON member can be there if she needs us during the night, and to ensure that she remembers to use her walker on her trips to the washroom.

Prior to her vision failing, she read books constantly. Then talking books were a wonderful way for her to keep up with her 'reading'. We intend to try them again soon, but her attention span and concentration are lacking since her stroke, so we fear that this too will fall by the wayside.

Our days are basically spent in silence because music or radio bothers her, and she can't see the TV well enough and has no patience for it. I purchased a laptop computer in November so I'd have something besides crossword puzzles to do and to still be near her. I would try to engage her with easy crossword clues to stimulate her, but it was not something she enjoyed, but rather found it annoying. Most of the time she stares across the room or at the ceiling, and conversations are laboured.

Mom's language has not fully recovered, and she struggles and is frustrated with trying to find words that elude her. Sometimes we are able to finish her sentences when she asks, but concepts are difficult to grasp when attempting this.

She was in hospital in October with renal failure due to dehydration. She has since started drinking more, and everyone is vigilant in making sure that she takes in plenty of fluid.

She has been assessed as being in a palliative state, but does that really mean anything for someone in her state? When my father had cancer and was palliative, it meant something because we could see that he was dying and knew what to do to help him die with comfort at home. We assume my mother is dying, but is that a relative term, or is she dying in the sense that really we're all dying? During her stay in hospital in October, her blood pressure was at times in the 180/XX range. Last Thursday it was 100/60, two weeks ago 120/65, a month ago 110/60.

Mom has bad dreams on the nights when it is just the two of us here. They are more like hallucinations sometimes, and they seem to linger for the whole night, easily remembered the next day in spite of the dementia and memory troubles. I get called back to her room two and three times after a trip to the washroom some nights, having to reassure her that all is well. On the nights when VON is present, there is never an issue for her. Each of the three women report a 'good night' when I get up in the morning and can't understand why they never see any of the 'action'.

Another issue is eating. She is slowly narrowing down what she will eat anymore. Part of the trouble here besides the taste, texture, etc. is that she is sure that all fruit and fruit juices cause her to have bowel movements too often. She is extremely focussed on her bowels and how they move, but they've never been much of a problem except that they're a bit messy to clean up.

At times I feel as though I'm slowly losing my mind and am amazed at how much patience I have for all of this.

Pre and Post Angioplasty

This is the letter I sent to Mark Lane for presentation to the Health Ministers at the upcoming meetings in Newfoundland and Labrador on 13 September 2010:


My name is Jeanine Baker and I'm 53 years old, living in Orillia, Ontario. I was diagnosed with MS in 1994, but like most of us, I am now aware that I'd been displaying symptoms for many years before this.

Pre angioplasty: my physical life was in a downward spiral. I was relying on my walker even for getting around my house. Just sorting through the recycling and getting it to the street was a harrowing physical task. I could no longer climb stairs without having to pull myself up the railing with my arms. Once at the top, I had to rest and regroup before doing anything else. Grocery shopping required the use of a motorized scooter. Bathing was becoming increasingly difficult, and having a shower was out of the question. I could not run 'odd job' errands in my car that required getting in and out of the car a few times in an hour or so, because I did not have the stamina or energy to do so. It's my belief that, given the history of my disease and its progression, I would have required the use of a wheelchair in my home and on outings before or by the end of 2010. I was wondering when I'd have to enter an assisted living facility, and had investigated the option of travelling to Sweden for assisted suicide (euthanasia) as the disease progressed.

Angioplasty: 2 June 2010 Wow! As soon as I was allowed to get up off of the recovery table 3 hours after the procedure, I easily walked to the washroom without aid. I stood up from the toilet without using grab bars, and was amazed when I looked down at my feet and realized what I'd done. My son said it was like night and day from a few short hours before. I could walk forwards and backwards. I could squat and stand, and with my left (most affected by) MS hand, I squeezed the nurse's hand to the point of pain. We spent a night in the city where I was treated, and after a five hour trip home, I was able to easily walk up my mother's driveway and up two sets of stairs into her living room.

Post angioplasty: 13 - 26 June, 2010, I travelled to Halifax NS to visit my son, and was able to do site seeing. I had not had a trip out of Ontario in over 10 years. Walking was easy, but I did use my walker for longer walking trips, and I was staying up until 11 or 12 at night. My bedtimes had been 7 or 8 pm prior to the procedure. On 29 June, my 89 year old mother had a stroke and I spent 2 weeks by her side in the hospital, making sure the overworked nursing staff at our local hospital was able to do its 'normal' nursing duties where Mom was concerned, instead of 'babysitting' her. I could not have done this prior to my angioplasty. Upon her release from hospital, my mother returned to her home and I have moved in with her, now being able to climb her stairs. The first few weeks were extraordinarily taxing, because my mother also had an infection of which no one was aware, and it was making her very sick. I endured sleep deprivation, and as a result, my left foot drop returned as did the fatigue. But this was 'normal' fatigue - not fatigue produced by my body. As of the first week of September, three months following my angioplasty, I am now getting back into physiotherapy, and my left leg is regaining strength. I can still do the coordination tests with ease. I also no longer mix up my right and my left, being able to give directions much more easily now.

I have been weaning myself off of antidepressants, because my depression (present since long before being diagnosed with MS) has disappeared. I have been told by several people that I'm now 'glowing' and seem to be much more positive.

There are not enough words to praise what the angioplasty of my left jugular vein has done for me and for my family. A simple, easy, painless 40 minute procedure has totally changed and improved my life. In fact, I have a life again.

Happy, Jealous, Determined

All of these reports are coming in every day about someone else who's been Liberated, yet still Health Canada and the MS Society don't budge on the Liberation from CCSVI issue.

Hands formerly numb or useless coming back to life. Feet that have been cold for years warming up. I am SO HAPPY for these people, but find myself feeling something I've rarely felt in my life - jealous. Jealous because I want to be Liberated too, but Health Canada and the MS Society don't budge on the Liberation and CCSVI issue.

I've discussed it with my mother who is wanting to help me out with this and pay for me to leave Canada, my home, to have the procedure done in Buffalo, New York because Health Canada and the MS Society don't budge on the Liberation and CCSVI issue.

Reading the success stories make me determined to have the procedure done before CCSVI can take anything more away from me. I really want to stay in Canada to have the procedure, but Health Canada and the MS Society don't budge on the Liberation and CCSVI issue.

My guess, and those of scores of others is that there is too much money to be made by Big Pharma to even inch towards Liberation for us. Much more profitable for Health Canada and the MS Society to keep pushing drugs we can't afford, that make us sick, or help us a bit for a little while at us, hoping we'll shut up and forget that there's a solution now.

Health Canada and the MS Society don't budge on the Liberation and CCSVI issue, but we have seen the results and we're getting ANGRY. We need them to sanction this procedure in our country NOW!

MS is a "used to be" disease. CCSVI is now.

Written in March, 2010

I have Multiple Sclerosis. I was diagnosed with it in 1994 when I was 37, but somehow part of me had suspected it for years. I can remember putting money into the box for research donations held by a man in front of the Hudson’s Bay store at Bloor and Yonge Streets in Toronto in the late 70s. As he handed me my plastic carnation pin, for some reason the thought, “I could have MS!” popped into my head. I have no idea as to why that happened. I was fit, strong, healthy, and kind of clumsy. Then over the next few years, time and time again it would feel as though my glasses were misaligned, and I would spend all kinds of time - sometimes days - trying to adjust them, until they were finally sitting properly. Now I realize that this was to do with the MS, but I had no idea one’s eyes could be affected.

In the early to mid 80s, I was falling a fair bit, but that happens to all of us, right? One particular time in Toronto I was climbing the stairs to street level at St. Patrick Station on my way to work. I stumbled and fell amongst all of the other commuters. A little embarrassing, a little painful, but also kind of mysterious because again this little voice, “I could have MS!” I recounted this to my son’s father because it was so peculiar, but he just got mad at me for even thinking such a thing.

Over the next few years, the falls and the glasses problems continued, but it was a fact, and nothing to worry about. In the summer of 1993, my son, husband and I went on a vacation through some of the Blue Ridge mountains and hilly areas in Tennessee. We decided to climb a mountain to its peak, having driven as high up as we could go, but I became too winded to get very far. It was time to get in shape!

Shortly before March Break the next year I had bronchitis for the first time in my life. During March Break we made day trips here and there. On one trip we went to the Royal Ontario Museum and I started to have some trouble with my legs. We went to Ikea, and I tried to leap over some bollards but just ended up with bad bruises and a limp. By the time the week was over, my right leg went numb, and I had awful needle sharp pains in it when anything would touch it. It’s kind of hard to describe something as being numb yet able to produce pain with a mere touch. I went out and bought a pair of sweat pants to wear to work even though I worked in an office. I couldn’t stand to wear anything remotely abrasive, and if my miniature schnauzer jumped up on my leg it was excruciating.

After dragging my right leg around, and favouring it for 3 or more days, I decided I’d better see my doctor. He checked me over after listening to my story, and he seemed to be more worried about all of the bruises (he thought my husband was beating me, but such was not the case). He sent me to a neurologist ‘just in case’. By November, the MRI had been performed (lots of other stuff happened too) and I was officially diagnosed with MS.

MS was the better one of the two diagnoses I’d given myself through research - the other possibility (in my mind) was a brain tumour.

So, why have I written all of this down?

• Because in 1994 there was nothing one could do for MS. Mine was of the Relapsing Remitting (affectionately known as RRMS) variety. It wasn’t until 2003 that my neurologist thought I should try Betaseron - an injectable and very expensive drug that was helping some people with MS. I gave it 8 months, and the neurologist agreed that I might as well not continue.

• And because in 2009, Dr. Paolo Zamboni of Italy revealed a possible treatment for MS - one that he had tried on his own wife, and that made it so she could walk again. It is now March, 2010 and the MS community is so excited about the “Liberation” treatment, which unblocks or straightens out the jugular vein, allowing ‘trapped’ blood and iron deposits in the brain to flow out again. But we as MSrs are hitting road blocks when we ask about getting the Liberation procedure in Canada. Some blame ‘big Pharma’ who have the MS Society and maybe the government in their pocket. Heaven forbid there should be a drugless solution to help free those of us with this mysterious and incurable disease, heretofore referred to as MS, now being called CCSVI - Chronic CerebroSpinal Venous Insufficiency.

I’m now almost 53 years old. I have been robbed of my strength, my job, playtime with my now grown son, my balance, and my way of life. My family doctor saw fit to not renew my driver’s license in 1998, but in 2003 my neurologist said there was no reason for me to not have one, and so I got it back again. I have moved from RRMS to SPMS - Secondary Progressive. I suppose the last stage is Chronic Progressive, or CPMS, but I don’t know if that happens to all who continue to decline or not.

So, I’ve been aware of living with this MonSter inside of me for 16 years, and each year I see something else leave my realm of ability. I must now use a walker anytime I go out, and for the most part, indoors too. But I am one of the ‘lucky’ ones. Some of us go downhill much more rapidly. There is a small but dedicated MS support group in my city. At its ‘heyday’, we had close to 20 members. In less than 10 years, four of our members have died of MS complications. MS won’t kill you, but what it causes to happen in your body can.

Dr. Zamboni’s Liberation procedure offers hope for people with MS. Hope where there hasn’t been any before. Liberation could free up those in the early stages of the disease, and maybe bring some degree of relief to those of us in the more advanced stages. Why is it not being performed on MS patients? People are going to other countries like Poland, India and the USA for treatment. Why has our government not moved on this and said, “YES! You deserve a chance at a more normal way of life. You need Liberation - it’s within our grasp, and we’ll let you have it.” Some of us are spending our life savings to leave Canada and get help in other countries. That's just not right.

Meanwhile, we wait. We carry petitions with us and ask our friends to do likewise. We commune on Facebook to see how to apply pressure to the government and the MS Society. Trouble is, we don’t have the luxury of time to wait. Every day with this disease we decline a little bit (or sometimes a lot) more.

Don’t make us wait any longer. We need Liberation now. It might or might not work, but that is a chance I’m sure we’re all willing to take.