- About the Conditions
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Hello, my name is Helen and I was diagnosed with Chiari Malformation Type 1 with Syringomyelia a week after my thirty-sixth birthday. Deep down I'd known for a long time that something was wrong, but there are only so many times you can describe a myriad of symptoms to a doctor without suddenly suspecting that all those hours watching medical TV drama has actually left you with a propensity for hypochondria! And as I didn't really fancy being associated with the term hypochondria whenever my weird symptoms struck I emphasized to myself that it was all in my head. I stopped going to the doctor. My battle was with myself and I was determined to feel well, more than I felt ill.
On the 30th September 2007, I was out shopping when I saw the sign for eye tests - no appointment needed. I'd been meaning to have one. I used my eyes for detailed painting in my business, squinting over manuscripts late at night and in my part-time job. It was hardly surprising that sometimes my vision blurred, or that I couldn't always focus in my right eye. I probably needed glasses.
I swaggered in..and stumbled out of that eye test. When an optician looks at the back of your eye, and then rears back, and goes and gets another optician, who in turn finds a senior-optician, and all of them keep asking if you get headaches - well, a stumble is allowed. For some bizarre reason I lied and assured all of them that I never got headaches. But as I lied my one clear thought was that I'd run out of time pretending that it was all in my head and that I was a hypochondriac.
I was sent to do some "shopping" while the senior optician wrote an urgent hospital referral. I sat in a cubicle of the shopping centre's public toilets (it was the only place I could think of for a private meltdown) trying to keep calm - cautioning myself about being overly dramatic. Convincing myself there was no need to ring my husband who was working the last day of his job and then having a leaving party. Once home I immediately Googled the medical terminology in my referral letter. Basically I had a brain tumor, or MS. Not good; in fact, very bad! Surely a brain tumor involved some sort of surgery, and the thought of having to tell my mother, who has suffered with MS for nearly twenty years, that I had it too?
I popped over to my friend's and managed several hours before I got around to "A funny thing happened at the opticians". She did what all best friends do. She held my hand, let me talk and let me cry. Telling my husband, that was hard. Possibly, I should have waited until the post leaving-do hangover had cleared but in the event, my husband, who is really very wise indeed, cautioned against borrowing trouble and together we waited for the opthalmology appointment at the hospital.
The hospital eye consultants were wonderful, if a little bemused by my symptoms and the size of the papilloedema completely obscuring the optic disc in my right eye. More tests followed. Did I mention my small hospital phobia? Life became about sucking it up and getting through the tests. CT scan? Okay. MRI scan? Okay. Lumbar puncture? Okay. Well, not okay actually, but we got through them. Over the next few months there were various discussions about me losing my sight and I remember one appointment where the eye consultant was visibly nervous about what was within their remit to discuss and what was the neurology department's job. I remember trying to alleviate the consultant's nerves and not break the "rules" by asking for a diagnosis despite the fact I hadn't been given a neurology appointment! Then I was told that there was sometimes a way the brain could "slip" a little and this was being looked into. Slip a little? Were they serious? I mean, I had enjoyed hours of TV medical drama but I don't remember that nice Mr. Clooney or that nice Mr. McDreamy ever talking about your brain "slipping".
I shut down my business - it didn't seem fair to ask clients to sign a contract for me to provide bespoke wedding stationery if I could possibly lose my sight. I tried to keep writing, but my creative gene disappeared completely. I'd always been a practical person who had the luxury of being creative as well but for a very long time it was like I'd lost a part of me.
In April 2008, my husband and I traipsed up to St George's hospital in London to see a neurosurgeon about a diagnosis. Ever the practical, I had prepared a list of questions, even though, of course I wasn't going to have surgery, whatever it was that was wrong with me. The neurosurgeon showed us my scan, explaining that I had Chiari Malformation Type 1 ith Syringomyelia and then patiently answered every single question on my list, and a few that weren't! As he went through the symptoms he asked me detailed questions and everything slipped quietly, solidly into place. Yes, I did get a lot of back pain, clavicle pain, arm pain, chest pain, and indigestion. Yes, I did get pressure headaches, sinus headaches and this terrifying headache at the back of my head when I laughed and coughed. Hey, my husband called me the human barometer because I would always get a headache when the air pressure changed. Yes, I was clumsy - did occasionally drop things and walk into doors. Yes, I did feel nauseous, anxious - have trouble with balance sometimes. But mostly, yes, I did get my words wrong. Oh dear, all the things that people found endearingly quirky about me.turns out there was a medical reason for. Turns out it wasn't all in my head, so much as it was my head that was the problem.
Presented with irrefutable proof that something was wrong I shed a few quiet tears and assured the surgeon I was fine. Downstairs in the lobby I sobbed in my husband's arms, because I knew I definitely wasn't a strong enough person to face surgery. Everything had shifted on its axis - something was really wrong with me. All my instincts about myself; all my reactions to things would have to be re-written. I didn't think I had the energy.
We released the information to family and friends with the precision of a well thought out PR campaign. Trying to protect people, prepare people and educate people. Time brought perspective and a reprieve - if I could live with the symptoms I wouldn't have to endure surgery. But it's tiring to constantly self-check and now there were times when my vision went completely due to the pressure on my optic nerve. The pain was getting worse and most days I was so tired I had to sleep in the afternoon. The sound of fluid whooshing in my head (Tinnitus) was so loud I needed music or the TV on constantly. In 2009, I chose surgery for a chance at improving my quality of life. It was the least my husband and I deserved.
In the months leading up to the surgery there were times when I felt completely, utterly frozen with fear. It didn't matter if I was at work, with friends, doing the housework or trying to sleep - the fear never lessened but I would remind myself that if I wanted a better life I had to jump off the cliff and trust that someone would catch me.
In the event it was a whole bunch of people who caught me - surgeons, specialist nurses, my husband, family and friends.
My decompression surgery was carried out at the Atkinson Morley Wing, Department of Neurosurgery, St George's Hospital, London, and I have to say that every single member of staff I encountered was professional, efficient, helpful and compassionate. The premises were spotless and the staff take great pride in working there.
The surgery went really well and I was home after a week complete with nineteen surgical staples artfully interrupting my chestnut locks. Unfortunately, I had to go back into hospital a week later after nearly fitting from a Chiari Headache like I'd never had before. I was given stronger pain meds and told it was probably a result of trying to run before I could walk. Recovery was hampered while the CSF found new paths (for a while I had no balance and was sick every time I moved. Then I only felt sick every time I moved). There were a few worrying weeks where the papilloedema on my optic nerve remained the same size, meaning my eyesight got worse before it got better.
And then it was time to go back to work. Those first few months were a little overwhelming. It was hard to go from living in my little bubble of simplicity, where all I had to do was concentrate on recovery, to working, housework, paying bills, going out and making all the endless everyday decisions we all make without thinking. When you work with the public and are exposed everyday to colds and bugs your body tends to build up a natural resistance. It took a while to reset mine! My immune system, suppressed for so long, had me picking up every bug going. The winter (usually my favourite season) seemed very long.
Now - eighteen months on from surgery the "Chiari" headaches have gone, the papilloedema has shrunk and my vision is much better. I still get some nerve pain in my neck and arms when I overdo it and my words still get mixed up when I'm very tired. I have been monitored to make sure there was no intracranial pressure build-up and my eyesight will be checked annually. I feel like I have my life back. Actually, a better life - I appreciate everything a lot more.
Recovering from decompression surgery takes time! The amount varies from person to person, but that time is important. My husband (he of the wise words) thinks it's a lot like the eighty-twenty rule: Eighty per cent of recovery is done in twenty percent of the time and the last twenty per cent of recovery takes eighty per cent of your time. He's actually right - but don't tell him I said that! Me, I think once you've worked at healing physically and emotionally, allowing yourself to enjoy life once again is the best reward you can give yourself and your loved ones.