[smerikalynn]

Hey I'm new. I was just diagnosed with an arachnoid cyst measuring 5.3cm x 4.4cm x 4.0cm in my left cranial middle fossa causing mass effect on the left temporal and left inferior temporal lobes in the end of December.

It all started when I had a partial complex seizure at work one day (I, had no idea what happened ) and my primary care sent me to get an MRI. Ever since that day, I've been having a plethora of symptoms. Migraines, back pain, shaking, muscle aches, dizziness, auditory and visual hallucinations, sleep disturbances, fatigue, muscle weakness, short term memory loss, confusion, dry heaving, nausea, speech impairments... the list can seriously go on and on and on.

Well of course I first saw a neurosurgeon who told me that there isn't enough evidence that the cyst is causing me all these issues and since I only had one seizure by that point he wanted me to see a neurologist before proceeding with anything.

Well at first the neurologist was great, looked at my MRI and said of course I'm having all these issues, the cyst is putting pressure on all parts of my brain. That surgery is the only solution but first she wanted me to get an EEG done. Okay fine.

Two more weeks pass and I finally get to do the EEG testing. Well, during the strobe portion of the test I proceed to have another partial complex seizure. When I came to, I yelled at the technician to stop. At first he was confused, and then looked at the monitor and was like, Oh crap, you just had a seizure. And he showed me on the monitor my normal brain waves vs my brain waves during the seizure. Even though I felt terrible and couldn't walk afterwards, he reassured me that it was a good thing they got it on record.

A week and a half later, feeling worse and worse every day, I finally get to see my neurologist again to go over the EEG report. Turns out they forgot to do the report so my neurologist had nothing new to tell me. She had to take my word about having the seizure and was skeptical. I told her about my worsening symptoms, that I can no longer work because I can hardly function just doing daily tasks. And then I put pressure on her about what our end game is here and what will it take to get me the surgery that I need. She completely backpedals, as if our first conversation never happened. She was shocked that I brought up the surgery and said "well these cysts are usually asymptomatic and most people have them their whole lives without any issue ". I was in shock. My boyfriend who was with me was in shock. He said "then maybe we need to get a second opinion" and she jumped on that train as fast as she could. She said "Yeah that's a really good idea, I'm going to send all of your information to this other neurologist and they'll be taking your case over from now on".

Like...what?

Later that day she got the "report" on my EEG and said that everything came back regular. I just can't believe this. Has anyone else have issues like this before? I'm sorry for the long story but I am just frustrated and I can't believe a doctor who is supposed to be helping you can just back out so quickly.

Any advice would be appreciated. Thank you

[Angelita]

Hi, there are a few of us here that have symptomatic Arachnoid Cysts. Mine measures 40x30 mm in the right parietal region.

Firstly, I understand your frustration! as you're probably aware, symptomatic cysts are not taken that seriously by Neurologists. However the more I read about various experiences and ailments that fellow sufferers experience, it leads me to believe that they do cause problems. It's just too coincidental. Just like you, I suffer from severe headaches/migraines. About a year ago I developed partial seizures which cause my face to spasm amongst other symptoms. I saw my Neuro recently and I'm now being refered to an Epi Doctor.

I'm in the UK so the medical system is a bit different, we don't get to choose which Hospital to attend or Doctor-you get what you're given. We don't get copies of medical testing reports either. Also they don't tend to operate on them over here either unless it causes pressure on your brain etc.

If I were you, forget everything your previous Neuro told you and start afresh. When you see this new Neuro just tell him everything. Ask him to reevaluate your EEG report. Tell him that it's affecting your quality of life. Be firm with them. If you don't speak up for yourself and how you feel, no one else will. Just a point aswell, if the 'seizures' occur deep in the brain, the EEG won't necessarily pick it up. Dont give up until you get answers. You can check other posts me and others have written about it on here too.
Good Luck

[Kitt]

Welcome smerikalynn.

[EnglishDave]

Hi there,
Angelita has taken the words right out of my fingers so I won't repeat her.
We have all found Neuros loath to commit to arachnoid cysts causing some of our problems. I go back for the first time in 5 years after an MRI for a different brain problem, but my other conditions have deteriorated since last MRI in '07 and I WILL be questioning growth of cyst and affect it must be having on me.
I must caution you, though. Don't blindly blame your cyst and ignore any other possible causes. Let your new Neuro find the answers which gives you the best treatment so you can return to a normal life asap. Try to build up a level of trust.
I hope this can be resolved quickly,

Dave.

[Angelita]

I tried to PM you Dave but it won't let me

[EnglishDave]

Originally Posted by Angelita

I tried to PM you Dave but it won't let me

It allowed me to PM you, have you checked your inbox?

Dave.

[smerikalynn]

Thank you for your advice and support. Just trying to hang in there and not let the frustration get to me. I see a new neurosurgeon in March so I just have to wait until then. In the mean time I'm going to work on getting my records from the eeg. I've never had health issues before and I'm so young I don't know how to deal. I have a hard time being assertive, especially when it comes to doctors. I will be calling this place every day to see if there are any cancellations so I can get in there sooner rather than later.

[Angelita]

I know it's difficult being assertive. I'm usually quite a strong person but when I go in front of my Neuro I come across as being a wet lettuce lol. I think a lot of it stems from just nerves. You get so anxious and desperate for a resolution to your health issues that it affects your assertiveness. Just keep in the back of your mind that you're ultimately responsible for your health and communication of your medical history and you've got to get this sorted once and for all.

If it helps, maybe you can ask a friend to go along with you as support?

[kmnlaw]

Hi I suffered from childhood epilepsy extreme for first three years of being born, with convulsions, etcetera. The last such was when I was around 9 years old, I blacked out. I never did a scan or follow up as a grown up. I am 41, as a litigation attorney I work under constant pressure, I have had occasions of migraine level headaches, visual pattern disturbance on waking from sleep states, lasts seconds and feeling of lethargy and sleepiness , lasting seconds at a time, I also get feelings of pins and needles on my scalp and neck. I eventually decided to do an Eeg and mri and turns out I have a 4.2 mm cyst on my anterior fossa and a 4.5 x 2.8 cm cyst on my posteria fossa. With no childhood scans available I am not sure of the growth rate, reading literature that says having it at posteria fossa is slightly more dangerous . I have also been reported with white matter intensities and ischemic changes. I am consulting my neurologist next week and am wondering if anyone has had similar case. In most cases symptomatic cysts are left us operated on. Has anyone had cranial fenesrtarion or a craniotomy with shunt to drain the csf / cyst. What's the hospital stay and recovery stay rate. Anxious about it all as I am the guardian of my friends mum and sister

[Kitt]

Welcome kmnlaw.