Hello to all, I’m new

Welcome Greetings and Introductions
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Good day!
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.

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Hello and welcome, I am new to this group as well. My 11 yo daughter was recently diagnosed with Chiari as well. She has many of the symptoms that others list here but her most recent is the numbness in her face. Her fingers and hands have numbness that comes and goes as well. She is also bothered greatly by issues with her ears and the area surrounding them. She has ringing and swishing sounds as well as a feeling of fullness and often complains that it feels like there is water coming out of them, although they are completely dry. Just as you, the first neurosurgeon we saw said her symptoms were not from the Chiari and told us to come back in one year to recheck. Thankfully, we have an appointment with another neurosurgeon this Monday. I am hopeful that we will have different results with this dr. I pray you find some relief and a dr that is familiar with Chiari that can help you. I hope it helps to know that you are not alone.
Kindest Regards, Angel

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Hi there! I am also new to this group. I have numbness and tingling as well. My hands hurt sometimes and my right foot feels hot.

I would meet with another doctor for another opinion. When you think of what is happening in our brains and spinal cord it makes sense to have all sorts of random sensations.

@myangelface
I also have strange ear symptoms. My ears muffle back at me when I hear a loud noise or when I talk. I have swishing, which I think it blood flow. My ears feel full and wet even though they have been examined and are fine.

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@Memes
We are currently in Durham NC. My daughter has an appointment for a second opinion with a neurosurgeon tomorrow at Duke’s Children’s Hospital and an appointment Tuesday with another neurologist. Praying for answers that make sense and offer some relief.

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Hi, Myangelface, I hope you get the solution you need. My surgeon described the decompression surgery to me as making space for the CSF to flow through, as if releasing the belt after you had a large meal. The cerebellum will not be touched.

What puzzle me is, wouldn’t the tonsils get more space to herniate over time? Should there be a structure build to prevent future herniation? I mean, it’s like plastic surgery people do to modify their nose for example. My Surgeon couldn’t give me any answer.

Memes, I hope today is a better day for you. I have mild headache occasionally, more during the menstruation period. The old folks from where I come from attribute this to poor blood circulation and rheumatism (wind in the head). I’m somewhat in the state of denial as I had live a normal life all my life, playing in basketball competition, even roller coaster in my younger days and I just can’t put my thoughts together to accept a decision on any surgery. I mean if it’s really once and for all, it’s more digestible.

Thanks for listening to my ranting.

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@Choc thank you, I am not sure how I missed your reply. Unfortunately, we are still in a downward spiral…Hope was recently hospitalized for a week at MUSC. I’ve just posted the details on my post about Chiari and EDS. I pray you are well—as well as possible :purple_heart: