Various Questions (Epilepsy and Chiari)

[maddie710]

Do any of you have seizures with your Chiari Malformation?
Can a Chiari Malformation increase and decrease in size?
I was diagnosed about 6 years ago with this?
Cerebeller tonsils extend 8 mmm beyond foramen magnum
Abnormal vessel - vascular malformation - venous angioma
9 mmm cerebellar tonsillar ectopia

Every neurologist I see about seizures says this has nothing to do with it.
Sometimes I get very hoarse
Feeling tight in back of head and headaches
Is there a cause for alarm given this MRI reading?
I get much conflicted information and wish to only consider surgery if there's no other way

[MaraFowler]

I have staring spells and what I call my "black-outs" those usually only occur when I'm driving (which is why I don't do that lol!)
I also get lightening flashes behind my eyes.. all the time. I don't know if what I've got going on are seizures or not.. will talk more in depth on this with the neuro on aug 14th.. (the laundry list just keeps growing!)
I feel that the seizures are more than likely caused by the pressure on the brain.. my little sister got 2 forms of menengitis as a baby and her skull growth was stunted.. so as her brain got bigger and the rest of her grew, she started having seizures more and more..
in fact.. now that I think of it.. she's probably got some form of CM from that... hmmm worth looking into if it could improve her quality of life... thank you for posting this and inspiring this thought! Hard to say if there's ever anything wrong with her because she has difficulty expressing things (mentally and physically disabled) I know she has vision problems that they could never figure out... hmm.
=] off to go ponder this some... thanks!

[celticbreeze]

I was dx with chiari in 01 and in 08 an eeg showed a seizure disorder.

I do not have grand mal.  My symptoms are: staring spells, loss of time, smelling and tasting smoke, night tremors (I feel myself having a seizure, but I don't actually move).  Until I had my eeg in '08, I did not know these symptoms were a seizure disorder.  

ns said seizures were from chiari because my brain was "squished" in my skull and they would go away after surgery.  My seizure and chiari symptoms started the same time in 2000.

but my post op eeg still shows seizure activity so my neurologist put me back on meds to be safe so I don't have a grand mal in the future.

[selmaS]

U r welcome...I also have had my voice change....it is somehow related to the chiari.

And my symptoms would come and go or cycle...it wasn't till 2006 that it got worse and didn't go away...it made it harder for me to work even tho I was working 70 plus hrs a week......in May of 07 I had a drop attack.....had surgery in Aug and in Nov as a result of the fall...testing was being done and the chiari was dx in Jan '08.

DO know u need to be careful with car rides , bumpy ones can affect ur chiari and roller coasters are a nono......nething u do that could cause u to fall or get bumped around can trigger the chiari herniation to grow in size...and u may develope more symptoms.

"selma"

[maddie710]

Thanks for the reply. I have Epilepsy (grand mal and small ones) and things get worse with it when I take too much medication (as prescribed by docs). Now and then I have tremors on the left side. I have periodic hoarse voice where it's hard to speak. It feels as if  I have to really force it to get the sound out. I do not have vocal nodes or anything. It comes and goes. I have noticed that after a seizure or before a seizure it's worse. Again, seizures are rare especially if I monitor my medication. Other symptoms are cooling feeling on back of neck, very tight feeling, heart jumping, and tingling in left arm. Less you think I'm a basket case, I'm not. For the most part I'm highly functioning but all of what i just described comes and goes a few times a year. The MRI revealed what I explained but I was told that this Chiari Malfomation (Type 1) meant nothing at all. I did not put two and two together till June of this year as in 2003, there was no available information I could find on it.

[selmaS]

HI and welcome to the Chiari forum.

There r too many chiarians , mostly children that have both chiari and seizures for there not to be a connection.
I do not know the connection.....

As to the herniation changing in size...they can grow.....decrease, no, it is probably the slice/angle they took with the MRI that it appears to have shrunk.

U deff need to be seen by a chiari specialist and u have to check for a syrinx.....tethered cord......and a CSF blockage....

May I ask what r ur symptoms?

"selma"