Chiari Decompression Surgery journey
Hi there, I thought I would post my journey to decompression surgery and healing from start to finish in case it helps anyone out there.
I was diagnosed at age 12 after developing very bad headaches. Nothing more was done regarding my diagnosis, and I had forgotten about it until I reached the age of 43.
At age 37 I developed frequent fainting spells and got all sorts of tests on my heart etc. I would almost blackout when I stood up getting out of my car upon arriving to work and my whole body would shake and my eyes would black out. I would have to sit down in order to settle things down. This dissipated after a while but when I became stressed I always had the tendency to get the fainting spells again.
At age 43 I started to feel very stiff over my whole body and tripped quite frequently. I thought it was just due to clumsiness or getting older. I also would get occasional dizzy spells like I did before but not as extreme.
At age 44 I fell very badly in my shower and hit my head on the side of my sink. I needed stitches and got a concussion. After they scanned my head at the ER and told me I had chiari malformation I thought I would look into whether all these symptoms might be connected.
I read that syrinxes can develop in the spine and decided to look into this further. I wrote a letter to a local neurosurgeon and said I wanted to get my spine scanned as I suspected I might have a syrinx.
Lo and behold the syrinx in my spine ran the length of my spine but was widest in the cervical and thoracic region 18mm at the widest portion. Needless to say it was giant.
The neurosurgeon said I should get decompression surgery sooner rather than later. I scheduled it for 08-05-2025.
On the day of the surgery I remember being wheeled into the operating room and there were about 20 people in there. It was wild. When I got my knee surgery there were like 3 people in the operating room.
Laminectomy on C1 and partial C2, Dura patch harvested from my own body, craniotomy, opening of the obex, cutting away the cerebellum from the arachnid adhesions.
After surgery I developed some very serious complications. I was in the hospital for 6 weeks.
Aseptic Meningitis, pseudomeningicele (subsequently manually drained), severe papilloedema caused by high intracranial pressure. Twice I opened my eyes in the hospital and everything was upside down.
I was put on acetazolimide to help with the increased pressure and then slowly weaned off of it 3 months ago when it appeared my ICP was going down.
It has only been since february that I have noticed a benefit to the surgery. I have felt less stiff, and have been able to read a 500 pg book every two weeks. Before I struggled to get through one book a year. I have been devouring books as my attention span and ability to keep engaged has monumentally increased. I don't feel like my body is in constant fight or flight and I don't feel those fainting spells.
My syrinx has shrunk by 1/3.
My question. Has anyone had the same benefit of being able to read much more prolifically and think much clearer than before?