My Chiari Story
I was diagnosed with Chiari Malformation type1 in 1999 aged 19. I had suffered with headaches for a number of years before my diagnosis which were considered to be migraines, my Mum also has Chiari but we were told as 'Chiari isn't hereditary' there was no chance I would have it, a CT scan to rule out other conditions showed otherwise.
I have had periods throughout my adulthood where I have been unable to work due to my symptoms but until recently they have always subsided and I have been able to continue with normal day to day activities. During 2007 my symptoms took a turn for the worse, I began to notice when I didn't have a headache as more often than not, I did. I would get brief but severe stabbing pains in my head and I was having to wear a scarf everyday, even indoors as the slightest change in temperature would set the pain off. I often used to work away from home and would have to take another bag with me just to accommodate all the pain relief aids I needed to have with me to get me through the week. By April 2008 I was no longer able to work, I suddenly had a whole new set of symptoms that I was unable to control with painkillers, over the last year or so I have continued to have new symptoms to the point where I now experience a mixture of the following:
headaches, eye pain, widespread muscle & joint pain, numbness & tingling in my arms and legs, 'electric shock' sensations, visual disturbances, hearing cut outs, difficulty driving, nausea, dizziness, over-sensitive hearing, sleep disturbances, chronic fatigue, brain 'fog' word finding/spelling difficulties, and pseudo tumor like episodes which can be extremely frightening.
My symptoms tend to work on a cycle, I will go through periods of insomnia followed by being unable to keep my eyes open for days on end, sometimes my headaches will take over then subside for a time whilst my muscle pain takes its turn. At times I will feel relatively 'normal' for a while then I'll get a sudden onset of a range of symptoms all at once.
I have a small herniation so there is some disagreement over whether my symptoms are caused by the Chiari, since my diagnosis I have seen a neurosurgeon every year and had a follow up MRI every five years 'to keep an eye on things'. My first neurosurgeon said he didn't want to operate 'just for the headaches' but said that there was nothing I could do myself to control them, he retired as my symptoms increased at which point I was assigned another surgeon. The second surgeon felt that I would benefit from decompression surgery and put me on the waiting list, whilst I was on the list he requested I see a neurologist to check that there was nothing else going on. The neurologist suggested I could manage my symptoms with a change of lifestyle, exercise, diet etc... After following his orders, attempting to exercise and only making my symptoms worse my Dr suggested I stop.
At this point I saw a third neurosurgeon, to cut waiting times the hospital had assigned me to someone else who was working another clinic, he felt that my symptoms were not Chiari related at all and that I suffer from migraines, although he couldn't account for all of my symptoms. When I asked if I could have a cine MRI, a test that would show if there is a blockage of CSF, I was asked what it was and what that had to do with my condition. I was told that it was 'obvious from my MRI that there was no blockage' and I didn't require further tests.
I have now been removed from the waiting list for decompression surgery, it seems I have Chiari and strikingly similar symptoms to other Chiarians but as my herniation is small I am now being treated for fibromyalgia, migraines and neuralgia, all of which my Drs have said could be caused by Chiari but without definitive answers they are now working on treating the symptoms rather than the cause.