Hi new here. My name is Amber and I’m 38. Found out I had low lying cerebellar tonsils without herniation on unrelated Cspine MRI. Neurologist brushed me off and said mine is minimal and he wouldn’t suggest surgery. Not a word about treatment, what it means to have that structural malformation and that all my symptoms align with Chiari since I was 7 years old. My biggest symptoms are unrelenting back head and neck pressure and pain, hand numbness and burning, severe migraines that make me violently vomit, unbalanced, fatigue all the time and headache pain when I bend down, cough hard, laugh hard or even blowing up a ballon!!! Just feeling unwell everyday for years. I’ve just accepted it as psychological, spine pain from herniated discs or just my migraines. I also have stage four endometriosis, for which I had five surgeries for removal and a total hysterectomy. So pain is my middle name. It took me till I was in my 30’s to get diagnosed for the endometriosis- so many doctors and tests to find out what was wrong. They found it coincidentally during an emergency surgery for a bursted ovary cyst.
I’m looking for a doctor in my area so I don’t get brushed off again. Should I ask for a Cine MRI ?
I’m in California in the Bay Area.
Also why do you think my Chiari wasn’t seen on my brain mri versus my c spine mri for which it was seen.
Hello, glad you are part of this support group. Im sorry you’re not feeling well, I understand. I live in NY, and had to advocate for myself to ensure i was properly treated for chiari malformation. I did all of the leg work, meaning i researched and sought out the surgeon that performed my decompression(s). I had a lot of scar tissue after my first one, and that can happen. I also had to find the right neurologist to treat my symptoms because ill never be completely symptom free as I have a significant herniation. Im 44 years old. Keep a journal of what helps you, like walks or a good pillow, what medications help your headaches and diet. Foods that do not increase inflammation, and certainly try things that you enjoy to decrease your stress…thats a big one for me!!! Research for chiari malformation specific centers with doctors/surgeons that specialize in it and have handled many cases with positive outcomes!
Hi ! Thank for writing me ! What pillow do you suggest ? Mornings are the worst for me. I wake up with my hand numb and my middle and ring finger on fire I basically did the legwork to get my diagnosis. Why does stress make it worse ?
Hi, I bought a pillow last year called Mediflow. It is a water pillow. After years of trying every pillow on the market this pillow has helped my neck and head pain. I’m a side sleeper. Can be used for back sleepers but not for stomach sleepers. It cost me $69.00 online last year. They have more expensive ones though. As for stress, it makes any condition worse and can even cause illness. Stress is very bad on the body and mind. Hope that helps some.