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My Story

Feb 02, 2011 - 0 comments

I was diagnosed with Syringomyelia in 1993 which extends from my C1 to my Thoracic area secondary to Chiari I. I was told that the condition was very rare and I was even presented to a whole bunch of neurologists and neurosurgeons at a mini conference to discuss what is the best option for surgery.  My symptoms started with head and neck pains, which were misdiagnosed as osteomyelitis and treated as such. I went to therapy everyday, had my neck strapped and stretched, had exercises and massages. But the numbness on my shoulder never went away. Then I had a very bad headache which left my whole left arm and face numb the next day and my whole left body weak. Thankfully, my doc was out of town so I went to a different doc, and an MRI for my brain and spine was ordered. In deference to my doc, I consulted with him first before having the test. He did not agree, but after some persuasion, agreed for me to have a brain MRI. (I must say he was very obstinate.) We had to travel 8 hrs to get to the big city for the test. Luckily, my cousin was a Neurology resident in that hospital and he helped us. He was a Godsend because when they noticed the syrinx in my cervical area, he went ahead and ordered a full brain and spine MRI. By this time, I already had diplopia and was dizzy most of the time. Before I knew it, I was scheduled for surgery within a week. A shunt was placed in T4 and T5 to alleviate the symptoms from the syrinx. It left me with a numb leg which improved and was better again after 3 to 4 months. I was back to work teaching at the university 3 months post op. I lived with the occasional headaches and shoulder pains, migrated to Canada 4 yrs later. Then 10 yrs post op, the symptoms came back and were worse. The headaches were unbearable, and the dizziness came back with the diplopia. I found a neurologist who referred me to a neurosurgeon specializing in Chiari and syringomyelia. I learned that shunts usually only lasted for an average of 10 yrs, which explained the recurrence. Had decompression surgery which did wonders for me. I was actually able to enjoy life except for the occasional follow up MRIs my NS ordered, the occasional headaches and shoulder pains.  Until 2010, when everything progressively came back...luckily I was scheduled for my regular MRI which showed a growing syrinx again, the Chiari was back and more new symptoms. This time I could feel pressure in my head which was worse with exertion of any kind. And, as always, I was in surgery within two weeks. And now here I am, recovering and hoping I can get back to enjoying life again...except I discovered a soft bulge at the base of my skull, oh I should say titanium mesh, 3 days ago and am a bit concerned. But, I am keeping my fingers crossed...

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