I haven’t posted on here in awhile because I haven’t felt well. I think I have asked about this subject before but not sure if I ever heard from anyone. I am 2 years out from decompression surgery and have been having migraine induces seizured for about 1 1/2 now. I am having a video EEG in June. I have been getting treated with Topamax which worked great for several months but is not working at all now and I am back to having seizures every time I get a migraine. They are partial seizures. Has anyone else experienced anything like this? I was told by my doctor that this is not related to my Chiari but from my experience, no matter what, nothing is related to my chiari. I don’t know why they say that, but they do. My 28 year old son has one too as well as a cousin and they hear the same thing. I find it unlikely that all of my symptoms that I did not have before I had my surgery are now not due to having a Chiari. I am so frustrated.
I’m sorry that you have not received any replies, but I don’t have an answer, as I have not had seizures. My Chiari decompression surgery was one year ago, but I regret having it. I cannot say that my headaches have improved, but I can say that surgery has caused my neck pain to increase exponentially. I have constant neck pain due to instability. At the moment, I also have what feels like a CSF leak. I know that many people experience an improvement in symptoms, but like you, I’ve had more problems since surgery.
Are you part of any Chiari groups on FB? I would think that you’d reach a wider audience and hopefully get an answer. The big group that I’m part of on FB is called Beyond the Measurement; Chiari and Beyond (or something like that). I hope you find what you need.
I don’t know much about this however I did have a video eEG and it was helpful! Good luck, I hope it gives you answers!
Thank you Maureen for responding. I’m sorry you have had so many problems. Seems that not too many people are 100% problem free after the surgery. I haven’t heard of that support group. I will look it up. Thank you.
Hi Kristen, I am scheduled for a Video EEG on June 12th. I’m glad yours was helpful. If you don’t mind my asking, in what way did it help you, because I am wondering if I should even do it? Were you having seizures?