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SET 2: GEORGE, YOU HAVE ANKYLOSING SPONDYLITIS
George Ilott

SET 1 of my experiences ended just as we had made our move to Vancouver in the late summer of 1966. Our son Steve was just a toddler and every day was a new adventure for him and for us. We were undecided as to where in the city we wanted to live so we decided to rent a house for awhile near my wife's parents in North Vancouver. Luckily, I was going to be around home for a few weeks to learn my new job and this gave us some time to organize our furniture and take care of things like getting a new family Doctor.

Thanks to my in-laws, we managed to find a Doctor very quickly and I made an appointment to see him as soon as I could. I was beginning to hurt from the exertion of moving and the lack of sleep from the pressures of the new job. The pain was now worse than what I had experienced before. I began to notice when I looked in a mirror, that I was slowly bending forward and to the right ever so slightly and fear began to build deep inside me. I had been 6' 3/8 " just 2 years before and the thought of having to change my height on any identification cards was quite funny but not for long. Now, I was almost an inch shorter.

The first trip to the Doctor was a chilling experience and the only question on my mind was, what is wrong with me? At the same time, I really didn't want to know. The Doctor was a quiet but serious type who made me feel comfortable but not necessarily confident. He did a very thorough examination and checked my back and whole body flexibility. He decided to send me for blood tests and x-rays before he would discuss what he thought I might have but I was sure that he already knew. I went back to see him a week later and he told me with an emotionless face, "George, you have Ankylosing Spondylitis." I wasn't sure whether to be ecstatic or hit the panic button as I didn't have a clue about what that meant. If the damned Doctor had smiled when he said it, I would have felt a whole lot better.

There were no smiles but he did tell me everything he knew about AS and looking back on that day, he didn't tell me much. He did say that I would go through some rough days and that I would have to take anti-inflammatory pills on a regular basis. He told me that the bending could get worse and that I would have to sleep on a flat hard mattress from now on. I knew I would have to keep at least one pillow or my head wouldn't touch the bed that well but what was I supposed to do with the rest of my huge supply of handpicked pillows?

Now I started to get major pain all the time and to make things worse, I had to start travelling for the company on a regular basis. I put in long working days and was away from home from 35% to 55% of the time. I saw more of the hotel staff in several towns than I did of my family. To keep going, I added a few more painkillers to what I really should have taken and the days went by.

My second son Don was born in 1967 and thankfully, my schedule allowed me to stay close to home for a few months. I was starting to hate the traveling as I knew it was physically dragging me down. I took all the pills the Doctor prescribed plus several more and usually, I was too tired or too sore to do any of the exercises. I just refused to do anything that would make the pain so excruciating.

My physical limitations in playing with the boys were starting to show and I found that I began to stand aside while other picked them up and swung them through the air or carried them on their shoulders. All these little things seemed to be piling up and I was slowly losing the will to do anything about it. On weekends and on holidays, I just wanted to use that time to rest up and get ready for going back to work. We did start to go out camping quite a bit but I was usually feeling pretty rough by the time we got back home as my back didn't like laying on an air mattress on cool and bumpy ground.

By 1969, I had bent a little more and the pain was increasing as the bending progressed. I also began to have major stomach pains almost constantly which the Doctor confirmed as the return of my ulcers. So, it was back to the hospital for another bout of surgery to again take out half of my stomach. Now I had 25% of the original stomach left but, as my appetite had been declining over the years, I didn't really miss the extra room.

Later in 1969, we decided to buy a new condo unit in Richmond which is on the south side of Vancouver. This was a lot easier on my health as there was essentially no maintenance that I had to do outside and very little inside. The boys loved the place as it had a pool and a great playground and they could roam a great distance while still staying within the complex. My height had now dropped to below 5' 8" and I started to wonder how far it could go.

My new Doctor was a bit more aggressive than my previous Dr in North Vancouver and he prescribed several new pills and told me in no uncertain terms that if I didn't start doing some back exercises, I would end up in a wheelchair in a few years. His prediction of a wheelchair was prophetic and exactly one of the choices I was given 15 years later, as an alternative to back surgery.

Because I was still recovering from the stomach surgery, I didn't take many of the pills prescribed for quite some time but didn't let anyone know. My back and the pain quickly got worse and I just couldn't move any part of my back to do the exercises. After a few months, I started hitting the pills again and did get some relief but I paid for it. Again, in 1973, I had another half of my stomach removed which left me with about 12% of the original. Thankfully, after some time, stomachs do stretch just like the bladder of a soccer ball and I can now eat a reasonable size meal.

Over the next 4 years, my height had dropped to about 5'5" and it now became very difficult to work without a great deal of difficulty and pain. I still was away from home about 40% of the time and when I came back from each trip, I was completely exhausted and wishing there was some way to make the pain stop. I guess I was starting to look very strange to people and many began to stare at me whenever we went out as a family to stores, restaurants and even camping. I found this very difficult to deal with and started to avoid putting myself in that predicament by not going out to social events unless I really had to.

Early in 1977, my marriage ended and we were later divorced. My boys were unique in that they now had bedrooms in two houses in Richmond and they frequently stayed with me on weekends and during the summer. I found that first year by myself to be difficult and compensated by spending more time out of town and getting more involved with my work. This of course, drove the AS crazy and I survived on just the pain killers but no more anti-inflammatory pills as they caused to many stomach problems for me.

Later that year, I met a young lady who had just started at our Research division and we became just casual friends over the next couple of years. Dorrit was just over 5' 8" and now at 5' 4", I had to look up to her. The next 3 years were difficult because of the AS but it was nice having someone in the office that I could talk to. By 1980, we both realized that we needed to continue having each other around and so we were married.

I was so happy that I was able to push a lot of the pain into some other part of my head and just enjoy life. Dorrit and I went on a 6 week train tour through China and had a fantastic time. My bent over shape caused some consternation with the Chinese tourism guides and I had to continually prove that I could climb stairs without someone holding my arm. On one tour, we were in some tombs which were about 6 levels down from the ground level. A Chinese guide grabbed my arm as we started back up the stairs. I decided to prove a point by breaking loose from him and running up the stairs as fast as I could go. By the time I had gone 3 levels up, I turned and looked back at the poor guy who was holding on to the railing and gasping. Was I ever happy that he caved in. I couldn't have gone another ten feet I'm sure.

From 1980 to 1982, life was great even though I was getting shorter and in even more pain. Nothing I seemed to try helped and I was getting desperate. I had an 80 degree bend in the forward direction and about 35 degree bend to the right side. I was now down to 5' 2" and counting. By January 1983, I was starting to get blinding neck and head pains coming from the nerves exiting the spine in the upper vertebra. The Doctor prescribed some high powered painkillers but that only partially deadened the pain but left me as a staggering vegetable at the same time.

I was sent to several back specialists and was prodded and poked and had my fused spine subjected to attempts of manipulating the vertebra. Not fun when there is nothing left to manipulate. My family Doctor referred me to a Doctor who was an AS specialist and also the head of medical research at the university. This Doctor, after a lot of tests, said that I had 2 choices, continue taking the drugs until they did have some effect or, seek alternative approaches in dealing with the pain. He was referring to acupuncture and sent me to another Doctor who was a qualified acupuncturist and also a back specialist.

Dorrit drove me to my first visit with the acupuncturist and I was having incredible pain as I hadn't taken any pills that day. I wanted to see if this man could really reduce my pain but I really didn't believe it would happen. When I arrived, the Doctor looked at me and said that he didn't usually give any treatment on the first visit as he would rather go over my medical history first. Having said that, he could see that I was in pain and took me into his treatment room. Out came the needles and I can remember thinking; why am I letting some nut do this to me?

He placed the first needle into the gap between my thumb and first finger and straight into a nerve cluster and I could certainly feel the sharp pain as he pierced the nerve. In about 15 seconds, the pain in my neck started to subside and by the time I left his office, the pain had reduced by a factor of 10. For the first couple of weeks, I went for treatment twice a week, then 4 weeks at once per week and finally, once per month. I was now able to go back to work. I felt better than I ever did for several years.

On one of my monthly visits for acupuncture, the Doctor gave me a card with a name and phone number on it. He said that I should have my family Doctor refer me to this surgeon who was successfully straightening AS and scoliosis patients with surgery. I was blown away by the fact that it was an acupuncturist who was giving me this news. No one in the medical community had ever mentioned it.

In October of 1983, my family Doctor referred me to the surgeon and away I went to yet another Doctor. He gave me an extremely thorough examination, sent me for more x-rays and told me to come back in 2 weeks. On my second visit, he told me that he could see some stress fractures in my spine from the extreme bending and load on the lower back. He described the surgery and the fact that I would be in recovery for at least a year and that there were certain risks, and that I would be at the end of a several month waiting list. Then he said with a smile, those words that still bring tears to my eyes; "if you are willing to have the surgery, I will straighten you up."

Of course, I said yes. Put me on the list. Then I rushed home to tell Dorrit the good news. We expected the surgery to be sometime around June of 1984 which gave us lots of time to mentally prepare for it. But that was not to be. A week before Christmas we received a phone call from the Doctor's office with the message, "Someone had decided that they didn't want surgery right before Christmas so do you want to take his place in the line up?" What an incredible Christmas present!! Now I felt nothing but hope.

Before

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After
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- to be continued

George Ilott

SET 3 FINALLY GOING STRAIGHT

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