Hi, I've just found this site today, & am so relieved to know that there are people out there who understand the reality of living with an arachnoid cyst.
I was sent to an ENT Doctor because of ongoing sinus symptoms & possible hearing loss.

After discussing my lifelong symptoms of horrendous constant headaches, seizures, tingling in the face, dizziness, tinnitus, muscle weakness & chronic insomnia etc., the doctor decided to do a brain scan. A week after the scan, I was asked to go back to the clinic & given an urgent appointment for the next morning. The doctor informed me that I had an arachnoid cyst, & told me that I would be referred to a neurosurgeon.

Although I was somewhat concerned, I was at least glad to finally have it confirmed that there was something awry in my brain. I had become used to consultants telling me that I probably had migraine, but nothing sinister. Not sure how they worked that out, since they never did any kind of scan.. Anyway, I saw a neurosurgeon 3 weeks ago, as well as several students who were obviously keen to meet the shambling wreck they thought they would see after having looked at the dramatic pictures of my scan. They were rather surprised to encounter a fully-functioning, intelligent woman. I could understand their surprise once I had viewed the MRI scan myself. The extremely large, type III Galassi left arachnoid cyst appears to be congenital as I have what the neurosurgeon referred to as remodelling of the overlying cranium, & the cyst extends out of the middle fossa & displaces the left frontal lobe significantly.

As she was telling me this, I was rather distracted by the MRI pictures, which show that this mass of cerebral-spinal fluid, is the size of half my brain! My brain, therefore, had to develop around this ghastly thing, & I'm frankly amazed that I'm not severely retarded. Apparently, arachnoid cysts this size are generally picked up by the medics when the patient is a young child, as the child presents with enlarged head, behavioural/intellectual difficulties etc. Imagine my surprise, then, when the neurosurgeon said that the cyst was "incidental", & not the cause of my "ear clicking".

A lifetime of horrendous symptoms distilled down to the very innocuous & rather unimportant one of recent ear clicking. I tried to get across the point that it wasn't ear clicking that had caused the ENT Dr to perform the MRI scan, but I might as well have been speaking Swahili, as she just kept repeating that the cyst, though "dramatic" was "incidental", & certainly not the cause of my health issues. She stated that my appointment with her was purely to reassure me that all was well(!) & that she was discharging me from her 'care' with no follow-up, & no need to monitor the situation.

I had, after all, lived with it for 50 years, so it was obvious it was causing no problems. Well, to say that I'm baffled by such a blase response is putting it mildly. I'm angry & distressed, & feel it's pretty pointless knowing about the cyst if there's nothing that's going to be done to address the issue or alleviate the horrendous symptoms. I haven't even been prescribed meds to help with the ever-present headaches. I feel a bit like Alice through the looking glass, where everything is bizarre & out of proportion, but I'm the only one who realises it.

I was hoping that any fellow sufferers could advise or give me any info that would be useful. For instance, I know that botox can be helpful for migraine sufferers; is it of any use for the pain & pressure of a large cyst? Has anyone found any particular supplements to be of value? Most importantly, has anyone found a neurosurgeon who actually knows want they're talking about in this situation? I doubt very much that the neuro would have been as blase if the huge cyst was in her brain, or her child's brain. She's basically told me to just live with an enormous tumour in my brain. Yes, it's benign, but it still causes the same kind of pain & pressure & other symptoms of a malignant lump. I simply don't understand how that isn't obvious to someone with supposed knowledge of brain abnormalities. Ear clicking indeed! What a farce!

Hi Yolanda,

My name is Maggy and I am just going to preface this by saying that I do not have any good advice for you. I don't have a cyst in my brain, but I do know what it is like to have chronic, persistent symptoms and finally feel like I am reaching an answer but be told that this serious issue has no connection with my other symptoms.

Unnecessary backstory (in case my experience proves helpful to you): My serious issue is with the nerves surrounding my heart (sometimes they malfunction causing my heart to stop/slow and my bp to drop causing me to lose consciousness), but the rest of my symptoms fit more under the neurological category. My cardiologist told me that the heart issue didn't explain any of my other symptoms. He told me to "live my life." It was very discouraging because my quality of life is quite poor right now and I had really hoped that we were getting to some answers. My gp saw the bigger picture - how the heart issue connected with my other symptoms. I believe my cardiologist was too specialized to see the big picture. Perhaps you are experiencing a similar issue with the neurosurgeon. Maybe your gp can see the bigger picture and will work on getting you a second opinion or can give you more options?

Regardless, we joined about the same time, and I am glad you are on this site. It sounds like you have had a lot to deal with without any answers and I hope that someone takes your symptoms seriously and I hope that someone can offer medicine/therapies to help with those.

Hello Yolanda Winter: I simply wanted to stop by to say welcome to NeuroTalk. I hope you find the time you spend here to be of benefit.

Welcome to NeuroTalk Yolanda.

I just wanted to let you know that you could try the forum search feature for specific keywords.

http://www.neurotalk.org/search.php

I'm sorry that you're dealing with so much and I hope that you find some information and support that will help you.

take care.

Hi Yolanda,
Welcome!!~~ I am new here too.

I just wanted to tell you that I have an "Arachnoid" cyst as well in my brain all-tho, much much MUCH smaller than yours about the size of a quarter last we checked around 2008.

And before my PD diagnosis in 2011 I often thought it could have been causing my tremors and stiffness in my wrists arms and legs. I have weakness in my legs.

The neuro's treated mine like it was nothing as well. They said I was probably born with it and perhaps it should be watched over time.
They really did just shrug it off as *nothing.

Your cyst is half the size of your brain??? How could they be so dismissive?
I don't understand how they don't think something that large could not be putting pressure on some kind of nerve in your brain?

My heart breaks for you!!
A lifetime of suffering should not be dismissed as: "Well you lived this long with it" sooo... it must not be that bad.

You will be in my prayers for answers.
Don't give up!! Keep pushing for answers.
It too me 8 years to get my answers its worth it.
They make break thru's all the time in neurology.

God Bless,
Jennifer

Hi Maggy,
Thanks so much for your response. I haven't been on the site since I posted, so I apologise for the delay in answering.
I'm so sorry to hear that you've suffered all this time with horrid symptoms & reduced quality of life. I totally relate to your feelings with regard to being told to "live your life" by a specialist you were desperately hoping would help you. I'm glad your GP had a more appropriate & realistic response, & I hope that something good comes out of that for you. It can feel very isolating when you're suffering badly but being made to feel that it's minor & that you should just "get on with it".
All best wishes to you, & thanks again for your kind response.

Thank you so much. It's a relief to find that there are people who can relate to this issue.

Thank you, Lara, that's much appreciated.

Hi Jennifer,
Thank you so much for your response to my post. I haven`t been on the site since posting, so I've only just seen the replies. Apologies for the delay in answering, I had no idea that people had responded.
I'm so sorry that you've been through so much, & that the 'experts' were as dismissive of your findings as they were of mine. It's bad enough to have these horrid issues without being treated like some kind of neurotic as well.
Your thoughtfulness is much appreciated, & I wish you all the very best.

Hello again.
I haven`t been on the site since I posted, so I didn`t see the responses made. Thank you for your replies & good wishes, they are much appreciated.
Since my initial post, my situation has worsened. I'm experiencing an increase in symptoms, along with some newer ones. I cannot now lie down. The pressure inside my head is too great. The feeling is of a pressure cooker about to explode. I think that the hormonal chaos of menopause has caused some growth or other changes to the arachnoid cyst.
I went to my GP and told him that I wasn't happy about the neurosurgeon's dismissal of my condition as "asymptomatic", in fact I found it farcical, & he said he would ask her to see me again. Fortunately, it was a different Neuro who saw me on my return visit, so I was able to go more fully into my history. He agreed that it was likely that there had been growth of the cyst, & he felt it was likely putting pressure on other parts of my brain. He has arranged for another MRI scan, this time with a cerebrospinal fluid flow scan included. Unfortunately, he told me that as the cyst is so large, it cannot be removed since it would leave a gap the size of half a brain, which would rapidly fill with cerebrospinal fluid & leave me worse than when we started, if not dead. The alternative would be to attempt some kind of fenestration in order to help relieve the pressure, but he was candid that in my case it would be rather a risky undertaking. There would be the possibility of one or more of the following: blindness; deafness; stroke; paralysis; loss of mobility; personality change, & other equally unpleasant things.
So much for something being "asymptomatic"!
I'm due to have my scans on March 5th, & will follow up on here about the results & my decision re surgery.