Well, the neurosurgery appointment was a big, fat waste of time. The doctor compared the MRI to the CT scan I had in 2020 when I went to the ER for severe hypokalemia, and he said nothing had changed from that, so he doesn’t want to do anything. This doesn’t help me because I’ve had symptoms my entire life, and apparently have to keep living with them 🙄. I was hoping for improvement, whether it was an attempt to drain the cyst or place a shunt so the CSF would reroute to my stomach and relieve some of the pressure on my brain. Honestly, he could have told me that on the phone.
I don’t like living with headaches, obviously. We found out about the Dandy Walker malformation when I was 17 because I was having headaches so often. They haven’t stopped. I still don’t know if the cyst was there at that time because those records aren’t online, and the doctors haven’t mentioned reviewing any records that far back.
I don’t have the image that the neurosurgeon showed us, but the one above is fairly close. The little gray circle in the middle-ish is the tip of my cervical spine, and the two gray blobs out from it are the cyst and the enlarged 4th ventricle. The fuzzy black and white blob near the cyst is a mastoid effusion, which I have symptoms from it as well but didn’t know existed and have no idea when it developed. I can hear just fine with my right ear, but I get pain behind my ear and jaw pain, plus that’s the side of my jaw that locks, and I now have an offset bite, which really bothers me aesthetically. I look like Mary Sanderson from Hocus Pocus 🙄🙄.
Everyone I’ve seen this year treats my results as “unremarkable,” but I’m just learning about this stuff. I knew I had a rare congenital brain defect which affected my balance and coordination. That’s all the information I had. I didn’t know the frequent headaches, shooting pain, jaw locking and pain, bad vision, brain nigglings/auras(?), etc., were all attributable to it, and since learning that, I want something to be done. If someone had a rotten tooth that gave them a lot of trouble, the dentist wouldn’t leave it in there and expect the patient to live with the symptoms from it, right?
I spent so much time and effort documenting my symptoms and took a printout to the doctor and the nurse barely looked at it and the surgeon didn’t look at it at all. At least I will have my MRI scan included as additional evidence in my upcoming second disability hearing in February. That’s happening, and I have no idea why I am having a second hearing. I don’t know if that is a good thing or bad thing. As if the first hearing wasn’t terrifying enough for me.
Cari R Esta 