Hi everyone. This has been such a valuable site to me! Thanks to all for sharing your experience here, especially the recent stuff on Dysautonomia and it's relationship to Chiari. The more dialogue out here the better. I have been pretty quiet since joining this group, but I would like to share that I recently caught up with one of the surgeons I had seen on my journey through my arachnoid cyst, stenosis and hydrocephalus, that ended up in surgery for me to treat the stenosis of the cerebral aqueduct (ETV)... This surgeon was not the guy who did my surgery, but he tells me that he does acknowledge the crowding of my cerebellum into the foramen magnum, and he believes completely in the Chiari 0 diagnosis. He stated that he has done decompression surgeries for patients having little obvious tonsilar herniation, where the patient got better. Not always, but often. He is located in Tulsa, OK. He trained at Johns Hopkins. Anyone who would like info just message me here.
Hey Doug, you're one of the first people on this board who I've seen had an ETV. I had one as well, (although I have an obvious chiari malformation, and it seems like my condition is a bit different from yours). I was wondering if you noticed any vision problems after waking from the surgery.
Hey Jay, I don't remember having any vision problems right after surgery. I remember waking up and feeling droopy and fuzzy, mostly due to the pain medication I'm sure. However, I do have vision trouble now, which my doc feels could be related to CSF pressure. Just not sure. I am having a lumbar puncture next week to measure the CSF pressure itself.
Strange, I didn’t remember it immediately after surgery either, but as time passed I noticed my vision was doubling vertically in both eyes. Are you having the same problems? I had to get glasses which sorta “fixed” the problem, but I still see it, just more subtly.
Yes! I am having that same issue, I already had eyeglasses, but had to go get a stronger prescription. I get floaters, fuzziness, cloudiness along with the cross-eyed double vision looking stuff.
I also have a lot of whooshing and ringing sounds constantly, worsens at night, which can be attributed to increased intracranial pressure (pseudotumor cerebri) and consequent higher CSF pressure. Neuroscience seems rather wishy-washy in making any concrete diagnoses related to these sorts of symptoms, which just creates frustration on the part of people like us I think.
jayque said:
Strange, I didn't remember it immediately after surgery either, but as time passed I noticed my vision was doubling vertically in both eyes. Are you having the same problems? I had to get glasses which sorta "fixed" the problem, but I still see it, just more subtly.
Yes, they actually thought I had pseudo tumor which was causing the malformation! Obviously that wasn't the case since after surgery nothing has improved. I also have a bit of tinnitus (not too bad), floaters, fuzziness, and cloudiness (as well as the vertical diplopia). Do you also have headaches? I've been having them pretty much 24/7 since surgery. Medication does nothing (so far), and I've noticed the only thing that has an effect on them is the amount of sleep I get.