Arachnoid Cyst

Thank you for your enquiry, Lisa. Well, it has been quite a long journey, trying to work out what my symptoms mean. The cyst surgery in July 2017 was successful in that the confusion and headaches and working memory were cured. However, over the following, up to last month, I have had many instances of memory loss. I was even re-hospitalized for CT scans and memory testing last April. All clear.
Just in the last two weeks, Transient Epileptic Amnesia (TEA) has been diagnosed. The cause is not clear, but could be partly due to the surgery, and could also be an effect of the now resolved cyst. The doctor said that blood flow in certain areas of my brain had been affected, and from my reading it seems that one cause of TEA can be vascular insufficiency. I think that means inadequate blood flow, but I'm not sure. Anyway, for the past three weeks, I have been taking Valproate for epilepsy. The doctor says I will have to take it permanently. But I already feel a bit more stable, amnesia wise.
On the surgery consent form, one risk was listed as convulsions, so I suppose the doctor was warning me that TEA, or something similar, was a possibility. I just had no idea that epilepsy might be an outcome. Anyway, I feel much better for knowing that a cause has been identified, and that this medication is highly effectively.
Thank you for asking!
David

Actually, I live in Kyoto in Japan. I guess that isn't going to help you.

Hello @tee9 I see the neuro in 2 weeks. I was recently in the ER last week with intense pain from my right temple and through my face. They said it sounds like trigeminal neuralgia, which could be from the pressure being exerted on my brain. I found out that it's not only causing mass effect on my parietal lobe, but now my frontal lobe as well.

@kyoto thank you for your reply-that is a bit far for me. I'm grateful to you for sharing your experience with surgery and its outcome. There isn't a lot of info out there.

@em87 I'm hopeful that your appointment goes well. Please let me know. I am still looking for a neuro that won't cut me off to say the cyst is not causing your problems. Tell me its migraines or tension headaches. Nevermind the ear pain, hearing loss, eye pain, face spasm (even while looking at it). Oh the last one said "it happens".Now having leg straightening spasms - can't sleep. Starting to happen all the time. Scared about irreversible damage and being stuck this way. If anyone can reccomend a doctor I would be in your debt. Tried UCLA.

Hello, my son is now 4 years old and was diagnosed with an archnoid cyst on the right side of his brain.
but i am going to give a little back story to help understand the situation a little better. He was a little over 2 years old when his older brother was practicing for tee ball. Well my son walked up behind my oldest son as he was in the midst of swinging the bat (it was alum) and my youngest son had to be rushed to the ER. Where we were being seen he eventually could not walk anymore and lost all speech. He could not even stand without falling. He had stopped eating and all kinds of crap. Well the ER took x-rays and kept asking us if he had any head concussions in the last 6 months (which he did not), so they diagnosed him with some hemtomia thing (they diagnosed wrong) so they kept us and transported us to another hospital 2 hours away where he still had no control of his body. We stayed in this hospital for 2 1/2 months until his legs came back and stuff. They did a MRI and more xrays, catscans etc and that is when they diagnosed him with the Archnoid Cyst. Now we have seen TWO different drs and they both have told us that this cyst causes no symptoms and I am so beyond done of hearing this. My son was really smart heck smarter than our 6 year old. He could complete full sentences and them be completely correct. He could count, sing his abc's, tell you his full name, spell his first name, tell you what color was which etc etc and now he cannot do any of it. Since the accident has happened so much has changed with him. and when i look up the symptoms and stuff it shows that it does have symptoms but yet the drs are telling me no. what should i do? is there anything i can do? I am so lost with this and I feel helpless for my baby.

I am not a doctor so I have no expertise on the clinical side of things, but it sure sounds like the accident and symptoms may not be coincidence. I hear you, and sympathize. Hang in there, and keep searching for other doctors, or alternative diagnoses.

I finally found a really great doctor fluent with these cysts and endoscopic surgery. In Santa Monica CA if anyone needs the help. Thx

@tee9 My appointment with the neurologist was today. He said my cyst is quite large and that he is referring me to a neurosurgeon for a surgical opinion. He is also sending me to get an EEG due to my memory issues to rule out mini seizures.

em87, that is great news. After surgery in July 2017, I finally got referred for an EEG a couple of months ago, and it turned out that seizures were most probably causing my memory issues, even after the successful surgical resolution of my cyst about 18 months ago. In December, I got a tentative diagnosis of Transient Epileptic Amnesia ~ epilepsy limited to within the brain. I have been on drugs for this for a few weeks now, and I feel much sharper. It's not clear where this sprang from, but somehow it seems to be connected to the large cyst that I had. Doctors cannot tell me how long I had the cyst. But it is possible that it had been interfering with blood circulation ("vascular insufficiency"), which my reading tells me can be connected to (epileptic) seizures.
As time goes by, I notice more and more that my memory blanks go back several years. For example, I took my mother on a trip to Japan in 2013, but I couldn't recall it. My wife reminded me of it last week. When I cast my mind back before 2013, everything seems to be in place. I am 49, and I am confident that this is not early dementia. Moreover, the academic article I read on this said there that there is no evidence of a link between Transient Epileptic Amnesia and future onset of dementia. I guess it's kind of a mechanical issue that can be sorted out. The epilepsy medication I'm on now (Vimpat) has a very high rate of completely preventing the seizures. It's just I have to stay on it forever. Now I feel more comfortable with that.
To my surprise, it turns out that all forms of epilepsy occur in about 1% of the population. I just had no idea. Another interesting thing I read is that seizures can occur right after waking up, and that definitely happened to me. Has that happened with you too?
Good luck with this all. It has felt bewildering, but I am back in a good place now.