My name is Kelly, and I have both chiari and epilepsy. I did not become
symptomatic until I was 35, both hit me at the same time with no known
trigger for either.
As you probably already know chiari tends to be symptomatic since birth,
and if not adults tend to become symptomatic in their mid thirties..
Epilepsy can manifest itself at any point, and puberty is a trigger for
some people. Though there is no scientific research to connect the two,
there seems to be a lot of anecdotal evidence that there is some
connection. ** In my opinion** this is due to the increased pressure
both on the brain stem, and in the brain, due to chiari, this causes the
seizures at the beginning. Left untreated these seizures become worse
over time.
I had a chiari decompression in May 2006, and a right temporal lobectomy
for intractable complex partial in March 2008. I am more then happy to
help you understand both issues. Now over 6 years post decompression,
and over 4 post RTL I'm putting my life back together. I am on about
1/2 the EP meds I was before surgery, and have been seizure free for
over a year.
As far as specialists go for epilepsy, check out naec.org-epilepsy.
They keep a listing of epilepsy centers that are rated level three or
four. Three indicates comprehensive diagnosis and treatment, level four
is the same but is the designation for facilitates that offer surgical
intervention. I would find a level four clinic near you, trying not to
travel far if you can avoid it. This will give you a full range of
diagnostics and testing, and give you the full range of treatment
options. I understand the travel issue, because for my chiari I had to
travel from Salt Lake to Denver to get treatment from a specialist.
I have had three neuropsych evaluations in the last 5 years. They are
amazingly telling, and you are right the neuropsych drs. seem to
understand something that is so difficult to put words to! Keep in mind
that once the seizures stop, the brain's plasticity allows us to regain
over time what the seizures take away. My IQ dropped 14 points from
before to after the RTL, but now 4 years later I have gained 17 points,
which means I am back near where I was prior to seizures. Never let
anyone tell you or your daughter that the damage is permanent!
If you have any questions regrading either issue, please let me know.
It is rare to have more then one neurological diagnosis, and it makes
treatment more difficult. I understand that, and know it is possible to
get through it.
Kelly
On 7/19/2012 8:38 PM, Matthew wrote:
>
> hi all. i am new to this group. i have been a part of the WACMA group
> on yahoo for about six years now and just recently learned about this
> one. WACMA stands for World Arnold Chiari Malformation Association. My
> daughter is currently dx with chiari type 1, left temporal lobe
> epilepsy, and retro-flexed odontoid process.
>
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