Hi everyone,
This is going to be pretty long, sorry in advance. I am hoping to find some insight into what I'm currently experiencing and some advice as to what I can do to get better.
I was first diagnosed 12 years ago when I was 15 at 5mm. I had been vomiting and experiencing severe pain every day. Unfortunately, I jumped from doctor to doctor over the years because I heard many things like "are you sure you're not making yourself throw up?" "Have you considered PMS as a reason for your headaches?" and "did your boyfriend just break up with you?" I was constantly told that "5mm is basically nothing. Chiari is usually asymptomatic, it must be something else." I did see a neurosurgeon when I was first diagnosed following a week of bed rest due to vertigo, who brought up the surgery, but said that it probably was not the Chiari causing the issues as I was so young and to reconsider when I got older.
Around 21, I had numbness and tingling in my limbs and severely decreased mobility in my neck and arms. My neurologist at the time tent me to a Rheumatologist who suggested massage therapy and cymbalta. From then on I got monthly massages which offered temporary relief. The pain got worse as time went on and I as no longer able to do any physical activity due to the dizziness and nausea.
In March of this year, my pain, nausea and vertigo became debilitating and I was no longer able to work. I went to the ER twice. On the first visit, the doctor laughed me out of there saying "it sounds like you just have a headache" The second time, my mom took me and brought old test results with us. After an MRI compared to the old ones, I was scheduled for surgery right away.
Going into the surgery, I was told I would go right from the recovery room home most likely and that the surgery would take 2-3 hours. My surgery was 8 hours long and I spent several days in the ICU followed by weeks in critical care. I ended up having a grandmal seizure followed by 3 subclinical seizures a day until they leveled out my meds. At some point during this time (I don't remember any of this) they did a spinal tap to check my CSF. It turned out I got spinal meningitis post op and that fluid was leaking onto my brain causing the seizures. My first visit to the hospital was over a month, followed by 1.5 weeks in acute rehab as I was no longer able to walk, barely able to speak and could not read or write.) I went back to the hospital for 2.5 weeks due to more seizures and then back to the rehab place for a week.
Now, I have extreme headaches and pain in my neck on a daily basis, cannot survive more than a half hour of activity (sitting up straight or standing), and my gait is pretty rough. I still get blurred vision and numbness in my limbs.
My NS jokes that I am the person fine print was made for- which is not the most reassuring thing to hear from a surgeon. He says he doesn't quite know where to go from here and that I may have to go on permanent disability. He is scared to go back in for another surgery because of all the issues that have come up.
Has anyone else experienced these issues post-op? Can anyone offer me advice as to how to overcome the pain?
If you read this rant, THANK YOU!
Best, Michelle :)