Going to Cleveland in two weeks!

October 21, 2009

I am getting nervous but also excited that I may finally get to talk to someone

who doesn't look at me like I have three eyes when I say Chiari.

I was diagnosed with Chiari a few months ago after having lifelong symptoms. As

of July we confirmed the Chiari (10-11mm, temporal lobe seizures that are not

being controlled with meds and likely inferior vermis hypoplasia. I have not

had a full spine MRI because my Neurologist says that its not necessary. I

think it is. I want to know if there is a syrinx or Tethered Cord especially

with my daughter's history (she has VACTERLS including Tethered Cord and ACM1)

and KNOWING that I have a sacral dimple also (just never knew what it was before

igh...)

I rarely sleep more than 2 hours at a time and often wake up choking to the

point of seeing stars.

I am kind of upset because my neurologist acknowledges my pain but is unwilling

to help with pain management because he said " If it hurts that bad just have the

surgery " . My argument is that if we can find some homeostasis of meds and that

can sustain me for a while then why chop into my skull?? He finally gave me

some Darvocet and Ambien to " hold me over " until I see the surgeon and I feel

better than I have in YEARS! I actually slept for 6 hours straight! I do

however notice that I felt markedly better for a day or two with the pain and

the darvocet but now it seems like I am either building a tolerance or maybe it

was placebo effect but I am needing them closer together right at the 6 hour

mark.

My neurologist is sending me to the head of neurology at UK - but from the

reviews I have read online I won't be surprised if he is " not for me " ... So I

have been patiently awaiting an appointment with Dr. Benzel in Cleveland. It is

about an 8 hour drive for us but my insurance will cover part of the surgery if

I decide to have it with him. I considered TCI but I have no insurance there so

unless I am REALLY desperate (or find a rich millionaire who wants to finance my

brain sometime soon) I have to choose someone in the Anthem Network.

I am very much looking forward to meeting Dr. Benzel and would love to hear if

any of you have been treated by him. I try not to judge a doctor based on what

others say (because one of my daughter's best docs is someone who is a little

brash for some tastes but he is fabulous for us) but I always love to hear if

people LOVE their docs!

So give me those opinions!! LOL

Amber

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