Chiari or coincidence?
Hello,
A few months ago I was scheduled for a pre op appointment where my neurosurgeon told me he would not preform the surgery on me and does not think I’d ever need it. Unsure why we called it a pre op appointment when that was the case. The PA even told me I’d have the surgeon give me the details of the surgery, blood work done, and a scheduler would come in the schedule the surgery. Then the doctor came in and basically just said “no”. And that most of my headaches and chief complaints were not due to chiari. My current status on my chiari is 7.3 mm extension and an abnormal flow of CSF “Orthogonal to the tip of the dens”
I am 30F and diagnosed with chiari a few years ago and told to not worry about it. Over those years my symptoms have progressively gotten worse.
Symptoms include: head aches, head pain (they feel different I swear), migraines, pain in the base of my skull that spreads when I laugh, jump, sing, yell, run, exercise, am constipated, look up at something, flinch, stop short, drive for over 30 minutes, quickly try to catch something, dance, or smile for long periods of time. I struggle with insomnia and waking up 4-12 times a night. I wake up with numb hands, neck pain, restless legs, joint pain, head aches and head pain.
My neck is regularly stiff and tight. I get massages from a strip mall monthly because my neck and shoulders are constantly tight and knotted. I occasionally wake in the middle of the night with a scream because it feels like my brain is splitting down the middle. I struggle with fatigue, visual migraines, regular migraines. I miss more work due to migraines than anything else. I often feel faint and light headed upon standing quickly or coming up from the floor. I get numbness and tingling and burning down my neck and shoulders.
And most importantly, I am miserable.
I am tired and in pain. I am anxious that a migraine is going to strike when I’m not home. I can’t sing and dance and be goofy. I am a light hearted fun person and I am loosing my light more and more every day. I isolate and stay home. I’m depressed honestly. People in my life tell me to go out and hang out with people. But how many times have I canceled plans due to migraines? Why keep making those plans? I’m scared to go out and about by myself even sometimes because what if I get a visual migraine and have to pull over driving? And what if it turns into a full blown migraine? This has happened before and luckily I had someone in the car who could drive me home but if I don’t, I’m stuck??
My doctors think I need to eat better and exercise more. *eye roll* exercise hurts!!! But I probably do need to eat better.
I have been seeing a neurologist that is trying to find me migraine meds. So far I get side effects or it holds off my migraine for a few hours and then it hits me even stronger. Since started meds my migraines last over a day.
I feel hopeless honestly. Does anyone relate to this? Is this from my chiari? Do I really just need to accept all of this pain and discomfort in my life? Is there other doctors that can help? I’ve gone to a neurologist and a neurosurgeon and the neurosurgeon has experience with chiari patients.
I just don’t know where to go from here.
This is long and full of complaints so I understand if no one gets through it but if anyone has advice or hope. Please share, it will make a difference. Thank you