Arachnoid Cyst

Hello, good to hear from you. Seizures, yes. Well, I learned the hard way that the brain is really sensitive. Who knew? Haha. Previously, I had nothing like epilepsy but the doctor speculated that the presence of the large cyst probably over time disrupted blood flow to a particular area, and that this could have been the initiator of the Transient Epileptic Amnesia that I am now stuck with. I do not collapse or pass out, or anything like that. The seizures are confined to a particular part of the brain. Fortunately, the medicine ("Vimpat") is totally effective at suppressing it; I just have to take it twice a day for ever, and it is rather pricey. But don't fret; this particular outcome is very unusual, apparently. Most cysts do not occur where mine did, in the velum interpositum. In fact, the first doctor I consulted went the standard textbook route, and said that the cyst, as is the usual case (?), can be left untreated.
My seizures only manifested as working memory failures. Long-term memory was never affected, I think. Bbut I would not be able to form new memories such as things I had been told, events that had just occurred, even significant ones such as people who had passed away. Really strange. But now, I seem to be completely restored.
I can say, at the very least, that is has been ... educational.

Where did they do surgery? In ont?
The most difficult problem we are having is finding a neuroligist that will listen and that has experience with arachnoid cyst. I have two cyst on large on the right one smaller on the left. It the worry of what the brain may do after surgery will it shift won't it shift is the pressure different in the cyst then the cf fluid so many unknowns. Glad u are doing well gives hope that once this is gone memory may come back. I currently am on anti seizures meds they feel I am have non epileptic siezures or narcelipsey
Thank you for replies appreciate any info you can share such a scary spot to be in

Hi again! Yes, I was very fortunate to be living near a university hospital with a specialist neurology department. I got re-referred after the first neurologist misadvised that the cyst can be left alone. He was young, and inexperienced, I think. My wife found the university department, and the specialists there jumped straight onto my case. My cyst was huge. I couldn't believe what I saw on the MRI. It seemed to be occupying about 1/4 or a 1/3 of the space inside my skull. My memory function and IQ was borderline mental retardation, which was also a shock. About 5 days post-surgery, that memory function/IQ had completely recovered, so to that extent, the brain can respond really well to the removal of pressure. As I mentioned, though, I was left with Transient Epileptic Amnesia. But my online reading tells that this outcome is really rare.
Has your doctor suggested the possibility of any other kind of clinical side effect from your cysts?

Similar sounding nightmare as yours the neuroligist we saw was a resident so pretty young no experience and told us pysch would benefit. However he didn't look at the whole picture we originally went to Er due to some weird episodes where people thought I was drunk but I had not drank. Speech slured could not control body very limp and staggering real bad head pains no ability to grip. Memory issues also long term is not bad short term is horrible no appetite exhaustion dizziness
Only within last few years have the weird episodes where space out or random fall asleep started. Recently moved to altitude over 3000 ft now the suggestion is to go to lower altitude to see if it helps pressure in head. Lived in Ontario last few years and had problems on and off but not as severe as last 7 months
I am a bleeder that complicates risks in seurgery the paperwork for operation was being filled out just really wish could have a different neuroligist who knew about these things and has experience.
Also having vision problems the internal medicine dr does feel most of symptoms are related to cyst and the area they are in
Middle cranial fossa mass effect temporal lobe right side and I have to look up the left side it had a different description
So weird how it effects IQ did neuroligist do that testing for you?

Please advise on what university you were seen at that did surgery? Please

Hello, I have just read through your previous mails and understand the range of terrible problems that you are facing. I am sorry to tell you that I do not live in the US. I live in Kyoto, Japan, hence my user name.

Dave, if I may call you that (I am also a Dave), I felt pretty lousy letting you know that I got treated in an overseas hospital that isn't accessible to you. I don't understand your description of your physical symptoms ("cervical level C-4"), but I just had a quick search online, with that keyword. I came up with a medical researcher called Benjamin Himes, who appears to be a specialist in this general area. His page has the Mayo Clinic logo on it, the same as this site.
Teresa, if you read this message to Davelt103, would it be possible for you to consult with Dr. Himes about where there might be a specialist near to where he lives? It sounds like he really needs some good advice, and guidance.
https://college.mayo.edu/academics/residencies-and-fellowships/neurologic-surgery-residency-minnesota/meet-our-trainees/benjamin-himes-md/

Thank you so very much for your reply Dave, I appreciate it very very much and yes I am in excruciating pain on a daily/hourly basis and I am trying to reach out to get help with my situation and you have at least given me an avenue to explore. I was in Rochester, MN for a surgical consult, referred by my pain specialist from St. Paul's Regions hospital, but I missed my appointment because I ended up in the ER @ St. Mary's hospital in Rochester MN, I was admitted and was afforded the opportunity to see one of the Dr.s from neurosurgery (not the one I was scheduled to see) he is not convinced that my pain is from the arachnoid cyst on my spinal cord. (I disagree!!) he wants me to come back in January for an occipital nerve block and trigger point injections. Blah! I have already had both of these procedures numerous times before, they have NOT worked. Plus in January it is very cold here in Minnesota and I live 2 1/2 hours north of Rochester and I DON'T travel well because of the pain associated with bumpy Minnesota winter roads!
So I am going to look up this doctor that you have recommended and see if I can see him instead of this other surgeon that was not confident about trying to do surgery and fenistrate the cyst, which I feel would be the best . But I will not do surgery at all they are going to make me worse than I am, unfortunately I am a quadriplegic I have been for 30 years. The Dr.s in St. Paul they are saying that if they do surgery that I will not be able to swallow again forever!! I can't do that!!

Not sure if traveling to Canada would be an option for you but Toronto Western has some great neurosurgeon.

Well, things have developped quickly, I went to my neurosurgeon appointment in Montreal and got admitted the same day. He was planning on surgery that day but got hold up by heart specialist go ahead, but surgery happened the next day. Surgery was very successful and I got out of hospital yesterday. I am doing well and surgeon is pretty happy with the results, I have follow-up appointments and MRI in one month and two months post surgery. I feel so blessed to have an amazing surgeon that cared, it made a whole world of difference!