My story- Chiari and Syringomyelia

I am writing this as a blog post as then I can add better tags and bits and people who need to search the things I am talking about will come across my story.

Arnold Chiari Malformation and Syringomyelia

My story-

It begins back in August 2009. I returned from a lovely trip to Rarotonga and felt odd. I presumed it was just that weary been relaxing and back to normal kind of feeling. After a while of not shaking it I just kind of plodded on and got on with things. I went to work, carried on as a mum and doing the things we all do. After a big night out with friends from all over the country I felt worse and the hangover feeling wouldn’t shift.

As the week after the night out went on I felt worse and worse. My right side was numb but hurt, I was dropping things, I had a headache, the right hand corner of my mouth was droopy and I couldn’t turn my head. I was also stopping talking mid-sentence, confused words and didn’t even realising. One of our family favourites was when I asked my daughter to open the goat instead of the garage. I self-referred to a physiotherapist who told me I stoop too much. Considering I am barely over 5 ft and didn’t work at a desk, I was surprised by this. After the appointment I felt so much worse and had to stop driving and distance. I went to see my GP on the Friday at the end of the week and told her all of the above. She did various tests on me and looked panicked. She then phoned the Clinical Measures department at the hospital to get me an appointment. They booked me straight in for the Monday. My GP expressed concerns and mentioned to me the possibility of a stroke or MS. I left rather dazed and with rather a lot of strong painkillers. I hadn’t expected any of this and thought I would just be sent home with some painkillers of the over the counter variety.

On Monday my husband and I waited to be seen. When my turn came I went in by myself and had to repeat the tests the GP did. I am now rather familiar and bored of this process. It involves pushing and pulling on limbs with a bit of walking around the room. The Resident Dr who saw me had a look of confusion and puzzlement on her face, so I knew I wasn’t passing this one with flying colours. She called in the Neurologist and asked for a second opinion. He had a quick look at my notes, looked at my face and agreed that an MRI was necessary.

I went for my first trip in the tube of doom (MRI) a couple of weeks later and on a Friday. I hated it with a passion and was shaken by the experience. None of my subsequent MRI’s has been as bad as this first one. I was shocked by the random noises, the jolting and how unpleasant the dye was . The radiologists had obviously seen something as I was pulled out of the tube rather rapidly and had the dye injected quickly. My blood squirted really high and left a mark on the ceiling. The taste of the dye stayed with me for days and I was so thirsty. I left rather shaken and went home and had a bath and a cry. While I was in the bath the Neurologist secretary called and asked me to call back urgently. I did and was asked to go in on Monday to talk through the results.

On the Monday we met with the Neurologist in a bit of a daze and rather worried about what we were going to be told. I fully expected to hear that I had MS. Instead he sat there and said how amazing my results were. He then spouted some words that I didn’t get and told me a neurosurgeon would be in touch to talk about putting a hole in my head. It didn’t occur to me at that point to get him to write down what it was. I just heard that it wasn’t MS. I went home, googled and eventually found the strange words he said- chiari, syringomyelia.

After a wait I got a referral to see the Neurosurgeon. The wait seemed forever. He explained to me that my cerebral tonsils were descended 8mm and I had a cyst in my spine that went from my neck to roughly where my bra strap is. It was a few mm wide and doing damage to my spine. Basically what was happening was that the fluid around my brain that should flow around the spine too  wasn’t. It was getting trapped in the cyst and not flowing correctly. This was the cause of the symptoms and the way to resolve this was to cut a hole in the base of my scull and if necessary remove some of the c1 at the top of my spine. He basically said, I would know when the time would come for the surgery as I would feel it. The main feeling being a headache after any form of straining or coughing. I have always had a creepy ghost feeling after both of these so it didn’t seem strange. Life went on.

I handed in my notice as I was working as a teacher aide with a child who needed consistency and I wasn’t giving that. Also the thought of being at a school with noisy kids hurt my head just thinking about it. After a bit of lazing around and feeling better, I decided to get on with my life and I couldn’t just sit around while my daughter was at school. I applied for a contact centre job at a bank and got it. The hours were within school time and it was a sitting down job. I trained with some great people and made some great friends. By mid-November things started going down hill. I was moved to a window seat with a sea view. I was very happy until I stood up and then promptly dropped to the floor. After that I could look out straight but not down. As I have always had issues with vertigo I didn’t find this that strange. The only problem was the vertigo got worse and worse, everywhere I went. By the end of the day I had major headaches, I was tired and wiped out from pain. When the headset at work started to hurt I knew that that time had come.

I think I had a second MRI and saw the Neurosurgeon. He said basically I could have my elective (yes) surgery before or after Christmas. I chose after and was booked in for 1st February 2010. That is when all gets back to normal after Christmas (I am in New Zealand so it is our summer). So, we had our Christmas and the date soon came around. I was nervous but kind of looking forward to finding out if the surgery was a success. It can’t be guaranteed to work as the hole can be cut too small or too big and not help at all.

I was in surgery for 4 ½ hours, drinking coffee the morning after and up and walking around as quickly as I could. It is far better to get up and about as quickly as possible to reduce the change of meningitis. I had lots of lovely visitors and treat brought to me. My surgery was on the Monday and by Friday I was home. Being home was a relief. I felt Ok for someone who had a new hole in their head and the top of their spine removed. Oh, he also shaved my cerebral tonsils. The main pain was immediately after standing. It felt like the sound of crunching glass inside my head for roughly 13 seconds. At night I also had bad leg cramps and issues with the staples in my head feeling revolting. One of the worst bits was having those staples removed. I felt really terrible for a couple of days after that. My sanity was saved by my family and friends.

Many of my friends made up a meal roster and cooked for us. One friend even came and cleaned which was bliss. I had been instructed to do as little as possible for 6 weeks and I am one of life’s fidgets so this was not easy for me. I realised how I did need to take it easy when I was proud of myself for getting as far as the letter box on my own. The visits and help from friends and family made so much of a difference in my recovery. I will be eternally grateful for their support and help.  I do not think my recovery would have been nearly as good without them.

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