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February 4, 2011

Some respite from chronic illness

The decision to seek controversial MS therapy came after soul searching and fundraising.
ELLEN FRANK

The nutshell version: CCSVI stands for chronic cerebro-spinal venous insufficiency, a condition thought to play a role in causing multiple sclerosis. The hypothesis is that MS symptoms are partly vascular, specifically relating to clogged veins in the neck; improper drainage of blood leads to an unhealthy build-up of iron in the brain. A new CCSVI treatment, called liberation therapy, tries to improve the blood flow by enlarging the clogged or tangled veins. It’s a relatively straightforward procedure involving balloon angioplasty.

However, as the surgery is not-yet approved in Canada, I would have to travel to Costa Rica to take part in the medical news event of 2010. Who in her right mind would go off to another country to have a surgery that is being called “liberation therapy”? And, if that’s not weird enough, this controversial therapy was developed by someone with the implausible name of Dr. Paolo Zamboni. How and why did I make this decision to have treament that even Zamboni has stated needs to have more clinical trials in order to establish its efficacy and other effects?

When liberation therapy first hit the news in December 2009, a good friend asked if I was going to go for it. She said if I wanted to go she would fundraise, thereby moving the procedure into my financial reach. This surgery, which can be accessed in Poland and Costa Rica, can run up to $18,000, with flights, food and other expenses taken into consideration, way out of my – and most people’s – reach. But with this aspect taken out of the equation, did I want to do this?

At first, my response was no way, not me. I am not going to Poland to be an experiment. I am not going to Poland at all, too much history. Uh-uh, not me, not doing it. Come June 2010, doctors had started doing the procedure in Costa Rica, and a friend of mine, a woman whose judgment I trusted, was going. I checked their website, it was impressive, explained everything and their cost included the surgery and a two-week rehab component. Costa Rica is still technically North America so it seemed closer and doable. July and August featured serious hand wringing. Go. Don’t go. Go. Don’t go. Ah, but my body sent messages: I fell three times, transfers from my wheelchair were getting more difficult and, as I had been diagnosed 22 years ago with primary progressive MS, I was not getting better. If I went to the hospital, there were no guarantees, but I knew I needed to try.

The fundraising began and incorporated one of Rambam’s higher levels of giving, where “the donor is aware of the recipient’s identity, but the recipient is unaware of the source.” As the recipient of funds, I had no clue, and still have very limited knowledge of who made donations to the fund. Even in cases where I know the identity of the giver, I do not know the donated amount. I just know I had three major sources: members of my synagogue, family members and the crowd I call “the Old Girls Network.” After a miraculously short amount of time, I was off to Costa Rica with much gratitude to the fundraisers and the donors, and the amazing amount of support and well wishes I had received.

On my way to the airport, accompanied by my son, Jesse, I announced that he was in charge of doing all the thinking at the airport and also communicating with family and a few friends. He, of course, had already figured that out! On Saturday, Oct. 30, he wrote the first of many e-mails updating our progress. It began:

So, welcome everyone to Ellen’s CCSVI adventure. It is 4:20 Vancouver time and we are in Toronto. The first leg of the journey went very smoothly. We loaded the mule, oh, I mean cab (I am feeling a little like a sherpa, so sorry for the confusion), we checked all our baggage and the manual chair, and headed to the gate. Boarding was fairly painless. (To be continued … I have to go help Ellen straighten her legs.)

Moving along was 63-year-old me in my motorized wheelchair, 40-year-old Jesse continuing to be the sherpa, and we did finally arrive. I’d love to put in Jesse’s updates for the 16 days we were in Central America, but there isn’t the room, so I’ll just use a few excerpts. His description of the hotel and mood is perfect:

Tomorrow we have meetings with the medical staff, and the day after it all begins. One thing I can say is that the staff at the hotel, Tropical Adventures and Passport Medical are all absolutely wonderful. Tropical Adventures handles transportation, tours and on-site (hotel) nursing staff. Passport Medical handles logistics, it seems, liaising between clinic and hotel nursing, organizing with the hotel, etc. The hotel is also interesting as it is a regular service hotel with vacationing and business guests and then there are the Passport Medical offices and staff and all the people here for the treatment. It’s quite nice actually. And we haven’t talked about it but I bet it’s nice for the mobility-impaired folks to feel like a majority not a minority or a segregated group.

The most exciting thing to report though is we had a great chat with a bunch of people who had their procedures a week ago. They all, to a one, had good things to report – more mobility or being able to feel texture again, balance coming back, color in the face again – it was great. The camaraderie between them all was also very lovely. One of the group likened it to summer camp. In the restaurant, some new arrivals like us introduced themselves and we talked about how long the flights were, etc. A new camp-group beginning. Anyhow, we are feeling very positive and looking forward to getting started tomorrow.

Nov. 3 and the surgery day arrived. I was glad Jesse was writing because I sure wasn’t and, again, I’ll use some of his words to describe this time:

Well, the big day is here, it is now 11 a.m. and Ellen was just taken away for the procedure. Things have gone very smoothly thus far. We woke at 4:30 a.m., showered, got dressed, I drank coffee for the both of us, we checked our lists, and then it was time to head to the lobby, and off we went. We arrived at Hospital Clinica Biblica and were met by Gloriana, who is one of the three members of the international team at Passport Medical.

Ellen knows that your wishes, hopes and prayers are with her, and I know that it gives her strength. She really does have an amazing community, without whom none of this would be possible. So many thanks to you all. Among all the good news we are trying to keep expectations low. Like the disease, everyone’s progression of recovery from symptoms is different. And this procedure is not a cure; it works to allow proper blood flow, so that the body is stronger to fight the symptoms. Having said all that, there is so much hope for the future in the air. Ellen says she will be just happy to be able to transfer [herself in and out of her chair] with ease. So we continue to try and practise the Buddhist approach of “no attachment.” You all know how well Jews do at that!

And here’s an excerpt from after I emerged from surgery:

She has returned safe and sound! She does not remember a thing. They brought her to the operating room, put her on the table, and the next thing she remembers is waking up asking where she was. Apparently, she thought she was still in Vancouver. The surgery went without a hitch. The hospital was great, everyone was wonderful and the facilities were top notch. We went back to the hotel and “summer camp” the next day. Then there were two weeks of three wonderful meals a day, my sister from New York arriving, and an hour a day of excellent physiotherapy.

From the time the decision was made, folks have kept saying nice stuff about courage. It’s good; I like for people to think I am courageous, but it really did come down to needing to just do something! During the whole process the assumption has been that the trip would be helpful, that I would feel “better.” But what is that? Will I dance? No. Will I hike mountains? No. But will I be able to transfer from my bed to my wheelchair in the morning without it feeling like an Olympic challenge? Would my own expectations of what is possible change? And would other people’s expectations of what I can manage change? Since I have returned, the most-asked question is “How are you?” The answer varies, depending on the day; there have been many good things, life is easier, and I had a delightful game of catch with my five-year-old grandson – and I sometimes caught the ball! What hasn’t changed is my reply: “I am very glad I went. No regrets, not a one.”

Ellen Frank is a writer, activist, mother, grandmother and retired travel agent. She has lived with multiple sclerosis since 1988. She is the author of Sticks and Wheels: A Guide to Accessible Travel on the Lower Sunshine Coast (Ouzel Publishing, 2006) and features information on accessibility services on her website, sticksandwheels.net. She wrote this article with the help of her son, Jesse Frank.

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