I have a congenital arachnoid cyst on the right parietal region of my brain. It has been associated with localized atrophy of the brain hemisphere, thinning of the adjacent inner table of the skull, and mild mass effect on the adjacent brain. It seems to vary in size every time I get it examined: one time it measured 3.8 cm in AP dimension, 1.8 cm in transverse dimension, and 3.8 cm in craniocaudal dimension and next time it measured 4.5 x 2.3 x 4.1.

I have suffered from a myriad of symptoms ranging from daily headaches (ranging from my forehead to the back of my head) to cognitive issues for as long as I can remember..I'm 27 now. Regardless of what treatment has been prescribed, nothing to seems to alleviate my symptoms. Most doctors have labeled it asymptomatic and claim that its unrelated to my current symptoms. They also claim that many people are born with arachnoid cysts and don't even know it. I disagree with their assessment and believe that it is causing my symptoms, especially considering all the failed treatments in the past.

The only doctor that has seemed to agree with me is Dr. Shenihan of Cedars-Sinai in California. He wanted to perform surgery to remove the cyst.

I realize that moderators and fellow peers are not doctors and are unable to provide medical advice, but I am open to any feedback you may be able to provide.

Thanks in advance for any help you are able to provide.

Hello phatzac145,

Welcome to the NeuroTalk Support Groups.

There are other members who have posted here on General Health Conditions forum discussing arachnoid cysts, some of them quite recently. Hopefully they'll see your message and respond.

If you want you can also do a forum search for other threads/posts.

http://neurotalk.psychcentral.com/search.php

I hope you are able to figure out what to do but the fact that this new doctor thinks your symptoms are related then you're doing the right thing in trying to find out more information. I hope it all works out well for you.

Welcome phatzac145.

Hi Phatzac,
I, too, have an arachnoid cyst, mine at the base of my brain. First spotted on MRI in 2007, it had grown considerably by last year. I can attribute countless symptoms to the cyst due to position and am currently waiting to see ANOTHER Neuro to discuss it and other problems.
One word of caution - have any of your Doctors discussed the likelihood of recurrence of the cyst even after surgery?
Whichever way you go I feel for you. Growths of any kind, or talk of surgery, on the brain is probably the most disturbing one can contemplate. Just remember, on this Forum there are people like me who have the same problems, and many wonderful Members ready to offer their support and advice.

Hi, I responded about having an Arachnoid Cyst on another thread. Mine was diagnosed two years ago after suffering from a 4 day migraine and measures 40 x 30mm on the right parietal.(Apparantly it's not a common place to have it) I also have some small colloid cysts.Like yourself I have severe headaches and Ive now developed partial seizures. My Neuros said the same thing to me with regards to being born with it. I read that you can also acquire it from a head injury. I had two fractures of the skull when I was teenager so I'm convinced I got it then.

I'm in the UK and they don't tend to operate unless it shifts your mid-line or causes inter cranial pressure in your brain. From what I understand some people have had a shunt fitted so there's continual drainage. There's a lot of dividing opinion on how this is treated so I think it's the luck of the draw tbh. Keep pushing and don't give up. Neuros aren't in our shoes so they don't really have a clue. Take Care.

Thanks for your reply.

The lone neurosurgeon that was willing to remove the cyst didn't mention anything about it growing back. However, I have read that one surgery sometimes is not enough to completely eradicate the cyst.

Keep me updated of any new updates in your treatment.

Thanks for your reply.

You and I sound like we are fighting the same battle..at the same time and at the same place. Our cysts are located in the same location in the brain, measure approximately the same size, and both are possibly congenital.

If you don't mind, could you elaborate more on the symptoms you experience? For example: I know you said you have a daily headache, but does it feel like your head feel full of pressure? Do you experience any psychological or cognitive problems (i.e. memory, concentration, depression, anxiety)? etc.

Welcome Angelita.

Thanks Kitt

Zac, the main symptom is the headache. I've had that daily since before my diagnosis. It then progressed to migraines. I started to experience blackouts at work. No warning at all I would just blackout. The Docs thought it was my heart so I had to wear one of those monitoring devices for 24hrs. My heart was ok.

And now since this February I now have partial seizures on my right side. I keeled over my desk at work a few times. My face looks like I'm having a stroke when I have the seizures so initially I was sent to the stroke unit 3 times! Thankfully it wasn't a stroke. I now suffer with up to 60 seizures a day. I am going to lose my job because I'm just too ill. I've always worked and now I can't do anything. No social life, no work life. Even running a simple errand for a few minutes is hard work. I still have headaches/migraines daily. I also do experience pressure in my brain. Even getting up from bed causes that heavy feeling you get. I wouldn't say I'm depressed clinically but I do get tearful and frustrated at times. My memory has been poor since my accident but I've found concentrating is very difficult for me now and near impossible inbetween seizures.

My Neuro had been useless! I'm due to see him in March but my GP has written to him so I can be seen urgently. It's been a nightmare to be honest. If you want to print off my post to show your Neuro then you're welcome to. If anything they'll gain a real understanding on how it affects people.

I'm sorry to hear that your cyst is causing you so many problems. I really hope you are able to find the help you need, much sooner than later. I wish you only the very best this holiday season and thereafter.