Sophie is 24 & is one of the many people I have met through online support groups for syringomyelia; Sophie describes herself as “lucky” in terms of the disease as she is fairly symptom free & hasn’t suffered much because of it. Despite this, I wanted to include Sophie’s story in the collection of stories I’ll be posting for the Syringomyelia Saturdays series because it shows how diverse syringomyelia can be.
“I was diagnosed with Syringomyelia in June 2014; I was 21, just finishing university and about my start my first full time job in finance. When signing my contract and completing my medical for my new job I selected n/a to all medical conditions, but within a few weeks everything changed.
“Over the course of 2013 I had been struggling with my left shoulder; pain, stiffness and weakness. I assumed that, due to my degree subject of photography meaning I had to carry a camera around my neck daily, as well the fact that I am left handed, that this was causing some strain on my body. However, on the 30th December 2013 I woke up in absolute agony, and couldn’t move my left arm and shoulder at all! It was my 20th birthday the day before and I had been out for a few drinks, I hadn’t drunk that much I thought, but I assumed I had just gained a very bad drunken injury – gradually my left arm/shoulder loosened up and I went on (very painfully) with my day. Weeks went by and my shoulder and neck were no better so my mum, after helping me get dressed every day since the injury, persuaded me to go to the NHS walk in centre. The doctor there told me I had just badly sprained the muscle from my neck into my shoulder blade and within 6 weeks it would be fine with full range of movement again.
“7 weeks later it was still getting worse so I booked to see my GP who decided it was time for an x-ray and sent me up to my local county hospital. The x-ray showed no damage and I was given strong painkillers and sent on my way with the “6 weeks” advise again. I went back to my GP who then decided physiotherapy would help, but after 4 weeks of my physio treating an unknown injury, I was discharged as there was nothing else he could do for me. At this point, my parents were fed up of me being in constant agony and border line overdosing on over the counter painkillers so they paid for me to see a private physiotherapist, who gave me basic massages and stretches but couldn’t do much without knowing exactly what the cause/damage was.
“Over the course of the next year and half, I was prescribed prescription painkillers; pregabalin, gabapentin, codeine, tramadol etc, none of which took the pain away and the the side affects were getting horrendous. I explained my concerns to my GP about the internal damage all this medication was doing so he authorised a steroid injection which helped for around 4 days then quickly wore off. I refused to go back onto any medication so he sent me to the specialist pain clinic for treatment. I was offered nerve injections, which would singe the ends of the affected nerves to hopefully reduce the pain. The injections of course didn’t work or even touch the pain. So it was back to painkillers and false physio treatment.
“Flash forward to June 2014… it was at this point I demanded further investigation from a different hospital. I saw a specialist neurosurgeon who specialises in shoulders, necks and spinal. I explained my symptoms to him and he said all of my symptoms match up to syringomyelia and I was sent for an MRI scan of my neck, spine and shoulder. The MRI showed a cyst/syrinx in my thoracic spine levels 6-9. My GP gave me the results and I broke down in tears, not knowing what the future, of which I was so looking forward too, would now hold for me. He admitted he didn’t know much about it himself so was going by the textbook definitions of it and any questions I had would have to wait to see my specialist again. Within 4 days I was given an urgent appointment. I was terrified with only doctor Google to answer my questions. Those 4 days were the longest I’ve had to go through, I don’t think I got out of bed unless I had too! When my mum and I arrived at the hospital, I could tell she was as scared as I was, but she was trying to keep calm for me – “at least we have an answer” was all we could both say. We went into the room and my spine was on the computer screen and there was my syrinx in all its glory staring back at me!
“My specialist sat and explained to me what syringomyelia is, possible causes and more. He then said “I don’t think this syringomyelia is causing your shoulder pain, and from an SM point of view you are symptomless!” I have never been so relieved/confused in all my life. He explained that with my syrinx level being T6/9, shoulder issues were almost impossible as the nerve endings in that area affect your bowels mainly, however he was glad we had found it so he was able to monitor it, but he wasn’t that concerned as I had never had any major back problems that caused any concern. He requested that I have an MRI every 12 months to ensure that the syrinx stays healthy and I remain symptomless, and he is hoping in December 2017 to discharge me from his clinic assuming my annual MRI is OK!
“During my diagnoses I found various support groups online and learnt so much about SM. Even though I am not directly affected by it, I feel for those who are because in those 4 days where I was in the unknown, I honestly had no idea what to do with the rest of my life! However, I have gained some friends for life from it.
“I definitely feel like one of the lucky ones when it comes to this disease. Yes it makes things like health insurance a massive pain, but it’s definitely a small price to pay when I think how this could have ended up!
“My shoulder on the other hand, was dislocated all along!!”