on Monday 19th July 2004, 2 days ago I seen my first set of MRI scans... I have arachnoid cysts.

I have 2.
this is what my report says.. [I have roughly tried to work out imperial measurements as I assume it will be mainly Americans that read this, I am Australian and we use metric]

report:
There is a large lesion of CSF signal which fills the left temporal fossa. it measures 6 x 8 x 8cm [2 3/8 x 3 1/8 x 3 1/8 inches] in size. there is associated mass effect with a contralateral midline shift of approximately 9mm [3/8"]. there is also focal thinning of the overlying temporopariental bone with a thin shelf of outer cortex remaining. There is no frank cortical disruption demonstrated.

There is a second extra-axial CSF collection without enhancement located over the superior parasagittal aspect of the right pariental lobe measuring approximately 2 x 2.5 x 3cm [6/8 x 1 x 1 2/8 inches] in size causing slight depression of the underlying pariental lobe. the 7th and 8th cranial nerves within the internal acoustic meati and the vestibulocochlear apparatus have a normal MRI appearance bilaterally.

No abnormal signal within the brainstem

Comment:
There is a large extra-axial CSF collection within the left temporal fossa in keeping with a congenital arachnoid cyst which largely replaces the temporal lobe. A second arachnoid cyst is located over the superior aspect of the right pariental lobe.

No significant pathology in relation to the CP angle.

********end of report**********

How did I end up getting an MRI scan?

for the past 3 years I have had a problem with one of my ears, originally it was only after I travelled. At the time I was travelling 1/2 hour a day to get to work and another half hour to get home, this was in a Ute [a small cab one where it was just me and the driver and no other seats] the driver of this vehicle loved air conditioning and preferred to use that than opening a window.. this combined with being in a small cab caused a change in air pressure [I'm thinking this is what triggered it but no DR has told me this] shortly after starting this pattern I started to get light headed and a strange pain in my left ear. over the next couple of days this got worse, for the first couple of hours I arrived at work [same when I got home], I felt dizzy and stumbled as I walked, walking down hallways was hard as I bounced from wall to wall because I had very little balance.

I then visited the local GP and he gave me some ear drops to clear it up and sent me off for a hearing test, after taking the drops for a few weeks my ear was much better and I eventually I stopped getting dizzy and had balance [I'm unsure of this is because my body adjusted or if that problem just disappeared]. the hearing test went fine and I have 'perfect hearing'.. but my hearing still wasn't
right...

I was then sent to a ear nose and throat specialist [DR Slack], he scrapped my ear clean and told me there was no problem with my ear, either I was imagining things or maybe one of my wisdom teeth was penetrating into my ear.

I went to the dentists, had x-rays and was told my wisdom teeth where perfect and stable, no where near my ear and that I most probably will never have then come through.

By this stage it was about 1.5 - 2 years since my first symptom I now had constant ear problems, my ear continually sounded `deadened' kind of like when your ear needs to pop. It is still like that now and I haven't had longer than a 1 minute period of time where I haven't had this sensation since. And it has been sending me absolutely crazy, and sometimes my neck and back of head get sore there.

Back to the doctors different GP this time as I moved town [DR Clarke]. He informed me that my ear was infected, and gave me drops for that. The infection cleared up, but ear problems didn't. he then tried a couple of other sorts of drops and antibiotics, none of which worked either.

I was then given another hearing test, same results again. Was told that maybe I should get an MRI or CAT scan, GP told me to go to a ear nose and throat specialist first to see what they had to say.

I was then referred to another ear nose and throat specialist [DR Dhasmana]. He inspected my ears, cleaned then, and could find nothing wrong. Gave me another couple of hearing tests, all came back with nothing wrong. I seen him another time after that and there was an infection again so I got another form of drops, and
told to come back in 3 months. So in 3 months I went back and was told my ears are fine, get an MRI.

I returned to Dhasmana again when my MRI scans came back, as soon as he put them up for me to see I could see that there was something massive in my brain that should not be there. He informed me that the scans of my ears where perfect and I had no problem with them, and that he only knows about ears, noses and throats, but that the grey spots on my scans where bad and to see my GP.

That afternoon I returned to my GP [DR Clarke] he was shocked at my scans and seemed quite shocked and worried about the Cysts. And instantly referred me to a Neurosurgeon, my appointment with him was t2 days later [today] and told me I would most likely require surgery.

So today I went to see the Neurosurgeon [DR Christie] who seemed to be of no help. He asked me some basic questions looked in my right eye and then told me to basically forget I got the scans and pretend that I had no cysts. He said that surgery was only an option if he could see a major concern of pressure on the brain and bad side effects from this. He told me it hasn't grown and its been this size all of my life and to leave it for 5 years and get another MRI scan then if I am still worried. Other than that, just don't play contact sports and if I hit my head hard then go to the hospital incase it bleeds. Then all he said was any questions? I asked him is that it my only option he said yes. I asked is there any other side effects I should be worried about? He just repeated the sporting stuff again and then said no. I asked him about the cyst in relation to my ear troubles, He told me that my ear troubles had nothing to do with the cyst. I lost trust of him during the question time as he wouldn't look at me while he was responding to my questions just looking every other spot in his office besides at me, until he finished talking, then he looked at me and said is that all? Thanks for
coming in.

His main reason for ignoring it was there had been a case where a patient with Arachnoid cysts has them operated on and then went on to have Epilepsy afterwards. I was in his office for a total of 10 to 15 minutes.

I then came home and have done some research on the internet, and seem to think that maybe he is wrong or just scared to have me as a patient.

Can anyone offer me any assistance of what to do?

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