Hi,
I have started my own blog and want everyone to know about it....it is www.arachnoidcystsupport.blogspot.com
Please follow me on arachnoid cyst questions, answers and concerns. You can email me with quesitons, too. I am a fellow arachnoid cyst survior. I have a very large posterior fossa arachnoid cyst, as well as now, I have a chiari malformation and my brain sags. My brain cyst was diagnosed back in '04, I had my surgeries in '05, and my brain sagging and chiari developed in '06.
These last two developments are due to my shunt overdraining for 6 months. I am a survivor! And now I have lots of insight and knowledge in the world of brain cysts. You can learn new information, get tidbits of news, and ask questions.
Please visit!
Thanks!
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So I have my arachnoid cyst that we have been monitoring for almost 3 years. I think I have memory problems, of course, headaches but the reason we are now doing surgery is that my optic nerve is continuing to thin. When we first discovered it my optic nerve was already thinning but we were watching it to see if it would change, well it did. The optic nerve swells when there is too much pressure inside of your head but then after a prolonged period of time it thins causing vision loss that is not reversible. so, my peripheral vision is not great. But now I am having surgery and there is a whole lot of "medical" stuff online which is so basic it is really nothing, but I wanted to know if anyone can offer person to person advice... How to really prepare for this, what should I have at home to help with the recovery, what might I want to take to the hospital, what kinds of things should I tell my friends and family so they can prepare? I already know I will be in ICU 1 day and regular hospital 4-5 more days and maybe longer if I need a 2nd surgery to shunt, because he doesn't want to shunt of first surgery because if fenestration is successful a shunt may not be needed. Oh and mine is in the center of my brain in the cavum vellum interpostum - for most people, this is a small triangle you can hardly see, for me, it is a 5cm triangle which is really taking up my brain space. But there is no way to get to it without going through brain tissue. Most brain surgeries I am seeing for arachnoid cysts they are accessible without damaging healthy brain tissue. but i am having a hard time finding an instance where a dr has had to enter the right frontal lobe to reach the center of the brain where it talks about the patient recovery and outcome. I suppose there is no way to know because we are all created so different and unique. But this mama bear of 3 likes to know everything - but I have my faith and my trust in God who knew about this when he created me and though we may not always know the outcomes, His ways are higher than ours and His plans are always greater! The flowers in the field don't grow if a storm doesn't pass and drop the rain so though I am going to walk through this season where I don't know the outcome I have faith believing that there will be flowers on the other side of the storm and through the good that comes may not be good in the eyes of man - I believe that there is a divine purpose... If anyone has any brain surgery tips please share.
July 17, 2018 - 2:51pmThis Comment
My father was diagnosed with a cyst in his right frontal lobe. He recently had a tumor in both frontal lobes that was removed in October 2016. He has had routine MRI's every 3 months since surgery. Everytime we go in they say "no tumor growth, no sign of cancer anymore' but they do not say anything about the cyst. it is 3 x 2 x 2.5 cm and here lately his cognitive function has been shot. After surgery he was doing better than he is now. It seems as if he is getting worse. Ever since surgery he has had memory loss. But he wasn't as confused and as slow as he is now. I'm not sure if the cyst is causing these problems or not.. But I decided to message his doctors office and ask why they never mentioned the cyst on his MRIs. It seems as if they just ignore the fact that he has this cyst. But my father is only 45 years old and it is like he is 80 with dementia. Sometimes he thinks that he lives with his mother and father and brothers. His father passed away in 2014. This is the hardest thing ive ever been through. He is childlike. But as I said after his surgery in October things were not like this. They have gotten worse cognitively for him. And we have not been giving answers. I am just wondering if anyone has had these problems with a cyst on the brain ? Confusion, lack of motivation, memory loss, childlike behavior, anger oubursts.... Anything would be helpful. Thank you
December 31, 2017 - 7:23pmThis Comment
I had problems from brain cysts all of my life, I am in fact starting my life over again because of them. I am bipolar and a long list of things, the important thing is I quit drinking alcohol and I have working bipolar medication. Over a year ago my cysts started to break up on there own and my life was misery. I wanted to reach out to some sort of community this has destroyed my life completely and I am back at where I was in high school. I realize how lucky I am to be miserable in recovery from all of this. After reading just some of the stories I know I am not the only person with this problem and know this doctor was right.
October 10, 2017 - 10:51amThis Comment
Hi my daughter is 11 and was just diagnosed today after an MRI that she has two arachnoid cysts one 18mm on the right side and 37mm on the left side. We are in Australia and I was hoping that someone could help me with research on neurosurgeons in Australia and if anyone had information on the best ones, it doesn't matter where in Australia.
June 23, 2017 - 5:04amThank you
This Comment
If you are having symptoms and have been diagnosed with a brain cyst, don't let your doctor try to tell you, or make you feel like your symptoms are all in your head. You have instincts, and who knows your body better than you? Get second, third, and fourth opinions before you just tell yourself your doctor is right and try to live with the symptoms. While some brain cysts can be asymptomatic (cause no symptoms), many do cause symptoms and they can be debilitating. Many times, if the brain cysts are left to grow, they can cause physical damage to the brain and permanent symptoms or problems.
June 5, 2017 - 5:46pmThis Comment
Hi there,
My son has a shunted arachnoid cyst. He has had the shunt for 5 years and it has been reattached once and replaced once. For the last 6 months he has been having 'weekend migraines' and we have been controlling them with pain relief after a CT said his shunt was fine. He is now having a cluster of daily or two daily migraines that the pain relief does not control - they are doing an MRI but my question is what were your symptoms of over draining?
January 19, 2017 - 2:12amconcerned
This Comment
I don't usually have a lot of pain anymore. On my semi bad days, I'm slightly confused. I have to concentrate on some of the simplest tasks. And, I have difficulty remembering things I just did.
On my really bad days, I'm better off staying in bed. (Although, I just can't) I have balance issues, having to concentrate on walking. I'm confused often, not remembering the simplest things. I get emotional really easily. (sometimes sad, sometimes mad) Having to concentrate on everything can get exhausting really fast. And, sensitivity to light is a problem.
And, when it's getting ready to storm, I usually have a bad day. I chaulked it up to the barometric pressure. So, can usually tell when it's going to rain.
And, that doesn't include after I've had a seizure (which are fewer and far between).
Then, i'm just off. It's like listening to a band with one instrument half a beat off. Something just isn't right. It doesn't stop me from doing stuff. It just makes some things difficult.
Anyhoo, those are my problems. Anything anyone is doing to deal with these would be helpful. Mostly, I've learned to live with it.
May 5, 2016 - 5:55pmThis Comment
Yesterday I had the worse day of my life. My 5 yr old little boy was having dizziness, headache, vertigo, vomit and his eyes were moving like crazy, my heart almost stop to see all this. I took him to the hosp they perform a mri, and they discovered a 3.8x 1.7 arachnoid cyst. No more episodes since yesterday but I'm so scared, we will see a neurologist tomorrow. Pls help with comments, I'm new at this and I cannot imagine my life without him
May 4, 2016 - 12:14amThis Comment
Hello Maria,
Thank you for posting your story. I have a posteria fossa arachnoid cyst about 2 inches causing pressure on my cerebellum. Causing many symptoms, migraines, dizziness, nausea, numbness...
I am trying to find good neurolo surgeon in Atlanta ga. Do you know of any? Or any specialists that you have had?
Thank you.
February 13, 2016 - 8:24amSarah
This Comment
Hi I'm Kevin,
I posted a couple years ago about discovering my arachnoid cyst and hydrocephalus after a ct scan due to nocturnal seizures. My hydrocephalus is congenital. My whole life, 40 years, I've had this condition and had no idea. Signs early in life, such as headaches, were excused as nothing to worry about. Focal seizures were excused as staring spells. Decline in school performance was dismissed as laziness or lack of attention, although I was tested as well above normal as a child.
This condition even caused issues in social situations. I either didn't know how to respond or worse my "filter" took a break and I said or did whatever came to mind. And, I had no idea I was behaving this way. Luckily, it wasn't ALL of the time. In fact, it was kind of rare. But, it did happen.
Even in college, it just got worse. I went through a few close relationships because I did inappropriate or even violent things without realizing it. My wife, fortunately stuck it out until I started having noticable seizures. That led to some ct scans and mri's. That made it a little easier for the people around me to know that this behavior wasn't all my fault.
The lack of a "filter" got worse when they were experimenting with different medications. But, has gotten a lot better now that they got me on the right cocktail of medications. I do remember that when they took me off of Keppra (which did nothing), and put me on Trileptal, it worked for a while. Then when they upped the dose of Trileptal, it had an inebriating effect. So, they lowered that dose and added Lamictal.
Last year, I went to see a neurosurgeon. He said my cyst was the biggest he has ever seen in a functioning adult. Then they tested my CSF pressure. BTW LP's are terrible. They found out that my CSF pressure was about double the normal pressure. So they decided to fenestrate my Arachnoid Cyst in order to relieve the pressure. That 1 hour surgery took about 6 hours. They neurosurgeon said the cyst was filling up to fast for him to do anything, so he closed me up. Unfortunatly while doing that surgery, some trauma was done to the cerebellum. After the surgery I had little to no balance.
The neurosurgeon said that it was normal for that surgery. And, it's the brain, it heals at its own pace. About 2 weeks later (still no balance), I woke up with a massive headache and vomiting. That's when my wife noticed CSF drainig from my incision. Well, another trip to the hospital. The next day, they were doing scans and preping me for surgery for a shunt.
Well, after that surgery, massive pain in my side where they ran the drain lines. And, still no balance.
After another couple weeks with no improvement to my balance. Which involve me using a walker at times, the scooter thingy at wal mart. When I did walk with my walker, I got wore out mentally from concentration on ever step. I couldn't go more than about 50 ft without stopping to rest. Then the doctor decided to enroll me in balance therapy.
The therapist said he never had anyone as bad as I was. And, that he was looking at 9 months minimum before I could be fully functional. If you've ever studied really hard for a test and your head hurt in an exhausting kind of way. Well, I got that concentrated in the back of my head every time I got done with therapy. I had to rest before leaving.
But, I was determined to get better, I did extra therapy at home on my off days. After 6 months, I was running, Iwas going up and down stairs without a problem. All better. The therapist said he has never seen such improvement in that short of time.
Anyhoo, that was a year ago, earlier this year I wen rock climbing on my birthday.
I was seizure free for a year and a half. I had one about a month ago. I didn't realize it when it happened. I have mine while I sleep. I woke up kinda groggy, nothing new. But, all day got that feeling of being a little off. And the next day, and the next... After three days of feeling that way, I thought that I had a seizure. I took a look at my tongue and sure enough....
Okay, that happened. It's going to happen sooner or later. My biggest issue lately has been intimacy. I'm just not in the mood. At all. Ever. I read online that lamictal has had this ecceft on others, even though it is not listed as a side effect. Any people here ever had this issue since on these meds?
Long story......
December 5, 2015 - 7:23pmThis Comment