Chiari Online Support Group

Newly Diagnosed, 8 Months of Symptoms

Hello Everyone! I am new to this support group, I have also joined one on Facebook as well. 8-9 months ago, back in October 2017, I started having chronic pain in my lower back, then it became my whole back and shoulders, then neck pain, back of head pain, pressure in my head started. Each month my symptoms “progressively worsened” as my Spinal Surgeon stated. After ordering an MRI series, my spinal surgeon showed me in the imaging that I have the Chiari 1 Malformation, and that my cerebellar tonsils have moved 5mm from where they are supposed to be.
I also have numbness, loss of feeling, tingling, pain in both arms, legs, hands, and feet. I am desensitized to really cold or really hot water. I have daily headaches, daily migraines. Neck is constantly stiff, sore, painful, same as shoulders and whole back. I walk slower, my balance is off, I went from having “falling episodes” where my body locks monthly to now weekly. I have memory issues, focus and concentration issues. Mixing up words, blanking out in mid-conversation, most days need help dressing, walk slanted. My hands shake, I lose my grip too easily, constantly drop and break things. Even when I drive, I’ll have no memory of how I switched lanes or how cars beside me are suddenly in front of me. I have chest pains, fast heart rate, difficulty breathing with chest pains, do not sleep, or sleep 14+ hours a day.
Long story short, I have Chiari 1 Malformation. No one in my family really understands this, most cannot even comprehend it. Neurology tried to diagnosis this as psychiatric - when it’s not. I have relocated to be with my mother to see a neurosurgeon in NY, since the neurology in Texas seemed to have no idea what they were doing. This is quite overwhelming, I cannot function most days, cannot do physical fitness, can barely walk half a mile now, pain and symptoms are so bad all I want to do is sleep.
I see a neurosurgeon this week. Hopefully this support group will help me through the journey of the Chiari Malformation, and surgery (if needed). Look forward to talking with everyone and seeing what this support group has to offer :).

My daughter who is 37 was just diagnosed last week, has all the symptoms you do!! We are in MY and her surgery is scheduled end of this month…im learning too…prayers you find help!

New York

Wow! Thats crazy! It’s surely a lot of symptoms to deal with every day! I hope your daughters surgery goes well and it helps her feel better! I’ll keep her in my prayers and pray her surgery goes well! And thank you for the prayers! I see a neurosurgeon tomorrow , see what is said then ! :slight_smile:

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Thank you!! Good luck, keep us posted♡

I will! :slight_smile: