I found out about my Chiari Sept 2nd 2022 and had decompression surgery Nov 22nd 2022. So not even 3 months after Dx was I having surgery. When I had found out about my chiari I was Dx'd with complex migraines and they said that there was no way my chiari could cause any of my issues and that I was over reacting over a migraine. I wasn't even there because of a migraine I thought I was having a ministroke or something. After going through my ER notes the CT they did actually find that I had a completed TIA and it was never mentioned. At one point the ER doctor was yelling at me because I was trying to get information about what Chiari was and he clearly didn't know(Kept calling it CheeAri) and telling me he was saying I had complex migraines and thats all my issue was.
Well fast forward to getting in with a neurosurgeon she had told me she did decompressions all the time and that if the surgery failed i'd be no worse off than I was at the time. I was scared and didn't think I had any other options so I agreed to the surgery.
Things just weren't right from the moment I woke up from surgery. I was in the hospital 5 day. I ate twice. One bite of a cookie and one bite of pineapple. I wasn't drinking, walking or even talking very much. The pain was insane. I was on a high dosage of dilaudid with a clicker i could use ever 5 minutes. I was still crying through the pain. I had gotten better after a few weeks the pain wasn't too bad but i was still sleeping a lot. the first week out of the hospital I had a seizure in my bathroom. The surgeon told me that it was nothing to be worried about and that it was probably a vegus nerve reaction and that it was very common and normal after surgery. Around this time I also started having anisocoria which she said was also normal and that it was probably the migraines manifesting in a different way. I went back to work after 3 weeks (Shouldn't have) thought I was solid for about 4-5ish months then I went off light duty at work. Things started getting worse again and i told myself just to push through it. Finally I went to my pcp and she ordered MRI's. The mris came back and they all said everything looked good with "Ample" space.
Well come to find out that space showed signs of high icp. which was ignored. I kept telling them something was wrong and they kept telling me that everything was ok.
Fighting for another year I finally got them to get another MRI and I had a LARGE Pseudomeningocele. Which I was the one to correctly dx. On the radiology report is states very clearly "No evidence of pseudomeningocele". It was so obvious it took me 15 minutes to figure out. You could see the CSF flow going through the dura. When I had brought up to the neurologist that I did indeed have a pseudomeningocele and it was extremely obvious he had told me "We are the doctors you need to just trust us." I told him "I'm not saying doctors don't know what they're doing. I'm saying they are humans and humans can make mistakes." at that point he told me he was pushing my appointment out by 4 months. All the other doctors I had been seeing did the same.
So I contacted Johns Hopkins Chiari Center and sent my imaging over. Flew across country for a doctors visit (It lasted 3 hours which was crazy to me). Come to find out that not only did I indeed have a pseudomeningocele but also the surgeon who had done the decompression had taken out WAY too much bone and you could actually touch my brain through the incision area. My surgery for pseudomeningocele repair and decompression reversal(they rebuilt my skull with a titanium plate) was scheduled for March 24th 2025.
When I had CSF coming out of my nose non stop I went to my PCP who gave me a shot for meningitis and sent me on my way stating I should contact the fancy doctors at hopkins. Best advice i've ever gotten from one of the worst doctors I had. Contacted them and I was moved up for emergency surgery dec 11th 2024. When the surgeon at Hopkins opened me up to do the repair he found two puncture holes in my dura that look like a staple went through. He stopped surgery to take a picture (Will attach).
I spent 7 days at hopkins. 6 days in the NCCU. They had to place an EVD to drain off the CSF. Dr. Jackson had said they had to drain the CSF off extremely aggressively. At one point the bag holding the csf almost popped. Anyway. Now we are in a waiting period to see how well the fix fixed the mistake of the first surgeon.
I really think its important for everyone to fully understand what they're getting into with surgery. I believe it can completely transform your life for the better however remember to trust your gut and to advocate strongly for yourself. YOU are the best advocate you will ever have!
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