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!