Howdy!

[mbcracken]

I just found this forum after doing way too much googling after my recent seizure and you all seem like a nice set of folks.
A little history - Adult onset seizures about 12 years ago now. Partial Complex temporal is the label slapped on my medical folder. I had a couple within the first 6 months another 3 years after diagnosed. I've been 5 years seizure free until this past Monday's breakthrough. I was at a cafe and had a strong aura then blacked out for about 1 min with slight quivering and some drooling. I took the option for a ride to the ER and my phenytoin levels were low...7.8. I'm currently taking 450mg/daily (200 mg morning/200 or 300mg every other day at night). ER pumped me full of Dilantin via IV. The ER did a CT Scan and diagnosed an arachnoid cyst located on top of my cerebellum about 3.3 cm x 2 cm. This cyst was news to me and sent me into a bit of a panic. My normal neurologist was out of the office so I talked with the on-call neurologist who was a surprised to hear about the cyst as I was because there was no mention of it in my 12 year medical folder. The on-call doc then pulled up my last MRI (2002) and there is was...um, why I was I never told about the cyst? I'm meeting with my neurologist tomorrow to hopefully get some answers. I've also made an appt with a different local epilepsy center to get a second opinion on my case. I've had a constant headache since Monday, ugh...

I just spent some time reading through the posts from "You know you have epilepsy when" and had some great laughs.

Anyways, just wanted to say hi and give you a little of my background.

Cheers,
Mike

 

[Nakamova]

Hi Mike, welcome to CWE!

Epilepsy is no fun, but this site is a great way to make the best of it and deal with the worst of it. Sorry about the breakthrough seizure -- that's never fun. Do you have a sense of why it happened, or why your Dilantin levels were low? I hope you get some answers from your neuro. And it's definitely a good idea to get a second (or even third or fourth) opinion. A lot of us here at CWE have had to be persistent and even pushy to find the right doctor/diagnosis. Keep us posted.

Best,
Nakamova

p.s. What the heak's an arachnoid cyst? Sounds like a tiny spider egg...

 

[Rae1889]

:agree:
thats what I thought.. a large spider egg.

Welcome Welcome Welcome.
Thanks for wiping your feet on the mat and introducing yourself. very nice to have more company at this "dinner" party. make your self at home, *but keep your feet off the coffee table* and settle in.

We dont bite *hard* . But feel free to ask any questions. there really is no such thing as stupid questions. if you need to vent, check out the padded room. we have all been there at some point. or the lounge to just listen in on some "insider E" humour

It is a good idea to have a lengthy conversation with your doctor, and make sure that this really is nothing to worry about and can be fixed by a non-invasive surgery. If not, I would think about looking into taking the neuro and the office he works out of to court. this could cost you alot of time, money, wages and stress and if it isnt something easily rid, then you have a lot more on your plate.

I know that sounds a bit rash, but at this point you should keep your options open. they kept something potentially dangerous *at that point* from you. they have no way to predict growth of a cyst. and should have told you incase it ruptured *not sure if brain ones can, but I know ovarian ones do*

Just check it out, but your doctor needs a huge wake up call. and get some other opinions too.

 

[mbcracken]

Thanks for the welcomes and suggestions. My main goal at this point is "no seizures...no side effects". I have read some lengthy papers on these cysts but need to talk to a couple professionals before I have a resolution in place.

I'm not sure if there is concern yet around the cyst. It may be nothing but it may be something. The Wikipedia entry is actually pretty good. I tried to post a link but I guess I am still a bit "young" here as the system would not let me. No problem...you guys probably know where to find Wikipedia.

Thanks for the 411 on the other rooms here...

Cheers,
Mike