I am grateful to find this group. I am from Singapore.
CM is rare and I cannot find any friend who knows enough to chat with. Here’s my story.
I woke up on Christmas day 2018 with numbness on 2 fingers. It persisted for almost a month and progressed from numbness of 2 fingers to 4 fingers. I saw a general practitioner who sent me to the Orthopedic suspecting the cause to be degeneration of the spine. I’m 47. The Orthopedic ordered a MRI. It showed CM1 and a Cavenoma in the spine. He referred me to a Neurosurgeon Dr A who did an analysis and explained my numbness on the fingers are unlikely symptoms of the CM1 nor Cavenoma, and concluded my numbness was due to bad postures, while the CM1 and Cavenoma were incidental findings. Suggested I do some appropriate exercise and review every 6 months with MRI or progression of symptoms whichever comes first.
The weeks that followed I felt numbness progressed and I had tingling sensation on my face, tongue, scalp, arms and legs. It came and go. It was unsettling, I went to seek a 2nd opinion with Neurosurgeon Dr J. He was very determined my symptoms were from the CM1, he seemed to know what he was talking and how the surgery would be done. As there was no syringomelia, he said I could arrange for a comfortable date to have the surgery done.
I considered for 2 months, meantime the symptoms came and go too, some days better, some day worse. I was unsure if a surgery is an optional one, I didn’t like the solution rendered, I visited a neurologist hoping for a different solution. Neurologist sent me back to a Neurosurgeon, this time a public hospital Prof Y.
Prof Y ordered a MRI of the brain as he said several conditions other than CM1 could cause numbness and tingling but CM1 comes with unique symptoms like syringomelia or a severe headache which I did not have. Hence his diagnosis was the same as Dr A, observe with MRI or return if symptoms deteriorate.
Strangely, Very strangely, the numbness and tingling sensation are not present most of the time these days. However the space behind my left ear felt strained and the left side of my neck is slightly swollen. The doctor said I had sternocleidomas, it’s a neck muscle ache and prescribed me muscle relaxant. So I am not sure if CM1 is the cause, I’m actually quite fed up trying to arrest the “thief”. I am unsure if I should just stop pursuing for the cause as long as the symptoms are bearable.
It certainly help to read about your encounters and it seems the dots are connecting together. It seems I do have symptoms of Chiari but just a matter of the speed of progression. I hope I don’t deteriorate too quickly!
Thank you for your patience reading.