Pain Fog: Living in spite of Chronic Pain
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Day 43. From September to September.

4/6/2015

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It has just occurred to Barry and I that this full year will have been consumed by waiting for surgery, having surgery or recovering from surgery.

It all came to a head last summer. I had a difficult spring and it went down hill from there. I was having considerable back pain for some time. It had gotten increasingly worse and it started to really affect my everyday life. Our boat is docked across the street and about four hundred metres down the road at a marina. I knew I was in trouble when I drove the car there one day. I had no choice I couldn't walk. I had been ignoring it and hoping it would go away. It became impossible to ignore anymore and it was obvious it wasn't going away.

My doctor had been treating me for a kidney infection and consulted with the internist who had originally found my spinal cord injury years ago. He had a hunch, he ordered an MRI. It showed I had a very severe case of spinal stenosis with nerve entrapment. He saved me again.

It just so happened that it was one of those few times in life when things worked to my advantage, with medical appointments. I had a previously scheduled appointment with my neurosurgeon. My doctors sent along their findings and they were ready for me when I arrived that day.

After neurological testing, it became clear surgery was required to prevent paralysis. I didn't have much time to think about it, because it was booked for exactly two weeks from that day. That surgery was a laminectomy and a foraminectomy, it happened on September 9th, 2014. It had a recovery time of 8 to 12 weeks. Immediately after the surgery, I woke up with complete relief from leg pain. The back pain was present but much better. I felt better than I had in twenty years. I couldn't believe the difference and I was extremely grateful that things went well, and they continued to go well.

That was until one day I went out for a stroll with Barry and Jerri. We hadn't gone one hundred metres when I went over on my ankle. The jolt to my back was excruciating. I quickly realized this was not just a stumble when I couldn't straighten my foot back to its original position. I didn't have much feeling in my foot and we hobbled home. In my heart I knew there was a neurological problem, and there was to be trouble ahead. I carried on, at the seven week mark, I had a post operation visit with the neurosurgeon. He ordered an MRI and nerve conduction studies.

In the meantime the nerve pain had increased dramatically, and my mobility started to decrease. The next time I was in my neurosurgeon's office, it was to discuss another surgery. This one is a more involved, longer, complex surgery with a long recovery time. My neurosurgeon explained that because I am an incomplete paraplegic, it is difficult to predict the recovery and what it will involve. This also means I may require time a a rehabilitation hospital in Toronto after my surgery and release from hospital.

I will admit, I felt as though the wind was taken from my sails. When I walked out of that rehab hospital against the odds the last time, I didn't expect to ever be back as an inpatient. I have had a lot of struggles with this one, but I am feeling much better about it now. This time I do not have two little girls waiting for their Mom to come home. I have a heads up this time, the last time it was a complete shock to me. I was totally unprepared and with no family in Toronto I was very, very lonely. One of my sisters had come from Newfoundland while I was in the hospital but I spent over two months in the rehab centre afterward. I saw Barry and the girls on the weekends and some of my friends drove the four hours to see me when they could. I had to dig deep to find what it took to stay strong while I was there alone. Contact with the outside was crucial as it is tragic to see everyone around you dealing with their new normal. I had a visit from a friend who then lived in Halifax and it helped me a lot. We got out of there and drove around a little and ate out. It made all the difference.

Besides Barry and the girls I had one constant. It was a friend's husband who was working in Toronto at the time. He was a saviour. He would come and visit, bring me essentials and when he realized I was going to be alone in the hospital on my birthday, made a plan for a very nice dinner in a restaurant downtown for the two of us. It was really sweet of him and it meant the world to me.

During that time I lived for the weekends and tried to keep it together and worked hard on physio through the week. My goal was to have something of substance to show Barry and the girls when they showed up on the weekend. Barry's 40th birthday occurred while I was at the hospital and I felt terrible about that. I had a plan though. I worked very hard and it happened. The weekend they showed up to celebrate his birthday, a friend had baked a beautiful cake for them to share with me. I brought them to the physio gym and positioned myself at the parallel bars, and took some steps! That was what I gave Barry for his birthday. It was hard work but I achieved it.

Those are all memories and feelings I have been dealing with in the last couple of months. I know from experience those things need to be felt, worked though and I will be okay. I'm going into this much stronger this time, and while it is only a possibility, if it does happen that I am in rehab, I hope to handle it better emotionally.

With the surgery being in the middle of May I have been cautioned to allow months, not weeks for recovery. We are hoping it will go smoothly and by September I will be feeling as good as new. Since my most recent surgery was September 9th, that is the date I am going for a full recovery. 

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    Maureen Clout

    I'm going in for a 4th neurosurgery; this time it's a repair to my lumbar fusion. Here, I will post my daily updates on dealing with diagnosis, surgery and recovery. Join me on my journey.

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