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.

GRRRR Starting it again - hit the wrong button

Well, it's been a while since I've done this. I forget at times I even have a blog because there's always a lot more on my mind than writing things down. So, back to the update.

I sold my house successfully and the closing date was 1 December, 2010. Funny, because that made it 15 years to the day since we'd moved in. The only things I miss about it are the main floor laundry and the view of the cemetery out the back.

My son and his wife came to Ontario for Christmas. He spent most of his time here with Mom and me, Melissa spending time between her parents' places. I drove son to Mono Mills after Christmas where and Melissa, her father and his wife picked him up. He also went to my sister's on Christmas day to spend some time with his cousins. Mom had said she didn't want anyone coming here to see her on Christmas because she thought they were coming just to see her before she died. I didn't feel that was fair to the ones who could come because she's their grandmother, and of course they'd want to see her.

The visits here were very short. Edward made a nice dinner and the three of us ate together when he got back from sister's.

So on to the New Year. I was spending days in quiet desperation while Mom did too. Trouble is, that's how she wanted it, but I wanted to be expanding a bit, and not living in almost complete silence. It's really difficult to live one's life with only 14 definite hours away from the house. That's all I got from Red Cross through the CCAC. That was time for everything I had to do. Haircuts for me and the dog. Groceries for Mom and me. Physiotherapy. Doctors. Socializing with anyone was out of the question because there was just no time for it. And no energy. I don't know if the lack of energy was because it was being sapped from me by our lifestyle, or because of the MS. I feel somewhat more invigorated now, but my body doesn't really want to cooperate.

In February, sister agreed to help me out by taking Mom on for two weeks so I could go and visit Edward in Halifax. I loved my time there. I had freedom I hadn't experienced in months. One day, the dog they were looking after had to go out and I felt badly for it then realized I could leave the house and take it down the street for a little walk. I couldn't do that at home because I had to always be in the house to make sure Mom was ok. We went out for dinners, they cooked suppers and such and I had a great time. I didn't want to come home again. When the plane was delayed coming out of Newfoundland because of snow, I didn't mind because it was one more hour away from my daily life.

I didn't realize until I got home how truly difficult it was to keep on living my life for Mom was. The two week break spelled the end of my caregiving. Sister, Mom and I toured two retirement homes (the first one had sloping floors, seemed dirty, was old, and stunk). Mom agreed on the second one, and the date she moved in was 9 March. It was hard to get her out of the house and on our way to the place. Lots of heel dragging, anxiety and such. I felt awful about doing it. I felt as though we were 'putting her down' in a way. I guess really we were. That is clearly the second to last or last place she'll live. If she has to move again, it will be into a place that is less expensive, with government assistance because the place she's in is almost $4K a month, and she doesn't make that kind of money.

She doesn't like it there because it's not home. She won't try to fit in. Anytime I go to see her she's either napping on her bed or sitting alone in the room. There are plenty of activities, but she's not a social person. However, sister took her to where someone was playing old tunes on the piano recently, and she says Mom was clapping her hands and tapping her feet. She hasn't been there for 2 months yet.

2 April was her 90th birthday. Her two granddaughters from Barrie and their significant others came along with the twins. Brother from Alberta spent a week with his surrounding the birthday. His son and family came up for the day as well. It was very quiet and low key.

She was taken to the hospital by ambulance shortly after her 90th with chest pains and palpitations. Sister said the doctor attending started talking about a defibrillator, so she showed him the DNR and he backed down. He did however, start Mom on Warfarin and Digoxin. Her family doctor took her off of them the next week. Then last week after talking with sister and me, he agreed with my thoughts of removing many of the medications Mom is on. This to keep her comfortable, not to keep her alive. She has said she doesn't want to be here anymore, and who can blame her. Anyway, since some of these drugs have been abated, she's warmer and seems a bit brighter. Go figure. If she has a stroke or heart pain though, they will not be calling an ambulance this time but will call the doctor instead.

For me, life has changed so much in the past almost 11 months. I had my treatment and was freed of MS symptoms - certainly from having to use a walker and from the danger of having to use a wheelchair. The freedom was short lived in that I was a different kind of captive, this time to Mom's disability. Now I'm free again and have been for about six weeks. I find I don't know what to do with myself besides go grocery shopping, do physio, visit with Mom. Now though, I can walk the dog. I actually walked 600 metres one day, but that was a rare occurrence. My legs just won't do it for very far.

So I've decided I have to seek re-treatment of my CCSVI by Dr. McGuckin. He tours around to do the treatments, sharing the wealth so to speak. My earliest possible appointment here in the East is in Pittsburgh PA but I don't have a date yet. He looks at more than just the jugular and azygos veins. He also makes an impact on the valves in the veins. The valves are evolutionarily redundant like the appendix. I am truly hoping this will have a lasting impact on my MS symptoms.

In the meantime, everyone who agrees with CCSVI treatment for MS in Canada is pushing hard to have it accepted and DONE in Canada which continues to discriminate against us by not allowing the treatment here. Anyone who wants it must leave the country. Edward did a documentary for his last term at school. He sent me a sneak preview of the not finished version with strict orders to only show it to Grandma, so I complied except I let my sister see it. His teacher was so impressed that he has told Edward to go ahead and let his course load this term take a back seat to finishing the project, and he will produce it so Edward can get it out there. It will make such an impact, I'm sure, once it's released onto YouTube, Vimeo etc. Teacher wants to take it to CBC.

So I guess that's enough of an update - oops - just remembered that I intend to move to Halifax this summer. The hardest part of that is leaving Mom, but I've told her it's going to happen and I think it's time for me to start living my life at 54 years of age.

An update

Well, it's been a while since I've done this. I forget at times I even have a blog because there's always a lot more on my mind than writing things down.

Today's 28 April, 2011. I'll back up in time a bit. I know I wrote about Mom's dementia back in November, but haven't really given much of a picture of my life for the few months preceding that.

Letter to Mike

Mike, I truly am happy for you. I am disappointed though that you've taken to putting down those of us who seek or who have had the angioplasty for CCSVI. It's really not a matter or so there - I'm right and you're wrong so you should shut up and listen to me!

From what I've read, Campath is for MSrs with RRMS. It is not in the running for those of us with SPMS or PPMS. Apples and oranges. There is nothing out there for us, except for the hope of angioplasty for CCSVI, with which Dr. Zamboni's own wife was treated.

As a person who had (likely still have) SPMS, I have found great success with my angioplasty. Almost 8 months ago, I was given a new lease on life. Nine months ago I had one hope and very little spirit left. Two years ago, I had no hope and had investigated Sweden's Dignitas for when then time I knew would come that there was nothing left to my life but pain, suffering, and complete dependence on others to live. I was also wondering which assisted living facility to choose for my home.

Almost eight months ago, I had to use a walker to get around my home. I couldn't climb stairs. I could scarcely look after myself, but was stubborn enough to keep going because there was finally hope on the horizon. Then I had the angioplasty. I could climb stairs. Walk unaided. Stay up in the evening. Cook dinner without having to sleep immediately afterwards. Then, 3 weeks after my treatment, my mother had a stroke and required a 24 hour caregiver. I moved in with her because I can climb stairs now. I can care for her because I don't need someone to care for me.

Maybe I will slip back to a less independent state, but I know that studies and practise have advanced the angioplasty for CCSVI and doctors are learning more each day, because of people like me who forged ahead and went for what we knew in our hearts was right for us, and for those who will follow us. Those of us who don't want to take more drugs. Who can't afford to take more drugs. Who found hope with the CCSVI treatment. I know that if need be, I will go for a second, even a third angioplasty, because it keeps getting better.

Mike, please respect our choices in the way that we've respected yours. Don't get my Irish up - it might not be possible anymore because things just don't upset and affect me in the ways that they did before my angioplasty to treat my CCSVI.

blessings,

Jeanine

P.S.: I've gone to this site for years for more information about MS. His was one of the first sites I found to be comprehensive after my diagnosis. He started out small but has really grown over the ensuing years: http://www.mult-sclerosis.org/Campath1H.html

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.