Pain in the Neck?

by Eoghan Brophy (Ireland)

A leap into the unknown Poland

In 2012, a new surgical procedure was developed for a condition called CCSVI. Closely associated with MS (multiple sclerosis) CCSVI (Chronic Cerebro Spinal Venous Insufficiency), when treated, drastically improved symptoms and the condition of MS sufferers. Dr Paulo Zamboni (Italian) discovered that he could treat his wife's MS by identifying an issue with the veins in her neck. Her jugular veins that should have been draining blood back into her heard away from her head and brain were narrowed or stenosed. After balloon angioplasty, her symptoms drastically improved. When the internet and social media heard of this, a wave of hope washed across the entire MS community. Was this the cure at last? There was only one way I was going to find out for myself. I began my search. As it so happened, Dr Tariq Sinan was living in Dublin at the time. He had become one of the preeminent surgeons specialising in the procedure. I met him on a damp bank holiday Monday in Terenure, in a coffee shop called Howards Way. I learned a lot that day. The procedure, the drugs involved, what I was doing, what he was doing – I even managed to teach him a thing or two about LDN and a few words of Irish. It was surreal almost. Here was a surgeon who commuted back and forwards to Egypt. He returned people to health. People like me. He referred me on to a clinic in Poland where another CCSVI authority of the day Dr Simka worked. Euromedic was a private clinic performing the procedure in Katowice in Poland. It would cost north of €6,000. Considering all I had read and learned of MS and the procedure, it appeared to be the best option available. I could afford it. Just about. And so I flew to Poland. I had intended initially to go alone, but my mother and sister demanded to come with me. I didn't mind the snoring so much. The hotel Diament Plaza was very accomodating. We met with Marta, the (rather beautiful) patient coordinator shortly after arriving. And so began the second journey within the first. Laden with hope, onwards toward health. Or so I thought The procedure began in a routine fashion. Sadly, after the surgeons began to scan me, they could find no stenosis in my neck. And so just as I was wheeled in, I was summarily wheeled out again. The surgical gurney felt much heavier with the weight of the massive disappointment. There was a small wound in my groin where the surgeons had threaded their tools and cameras up through my heart into the veins in my neck. This became somewhat more interesting when the nurse called by later to change my bandages. My masculine entirety on display was one thing. The scissors she had were quite another. It was a much needed moment of levity. Marta was heartbroken for me. I'll never forget the sight of her tears and the way she held me after the surgeons explained (in Polish of course) what had happened. Here stood beauty in a red dress, weeping on my behalf. This was clearly not good news. I already knew of course, based on what Dr Sinan had explained to me in Dublin. I knew what had happened, what the scopes saw, what the expression on Dr Simka's face meant, even under his surgical mask. My mother and sister were understandably upset. Euromedic authorised a 25% rebate, so financially it wasn't all bad. And so, once again, we pieced together our time remaining in Poland as a family and tried to have a short holiday. We saw Kraków, Częstochowa and Katowice. Lemon Sorbet in Kraków's main square cheered me up a bit. The procedure has since been scientifically disproven. Those with hope who had been given some straws eventually dwindled in number until only a few remained. They were most aggrieved when the Buffalo CCSVI trial concluded I sometimes think of those who died from surgical complications, trying to save their health. The experience and the trip to Poland was an invaluable chance to connect with my family. I'm glad I went. Nowadays, I'm happy to be alive and well.