11 year old son diagnosed w/ chiari

[Guest guest]

Hello all,

I've sent this e-mail to some of you individually and thank you again for your

kind responses.

I am now sending it to the group in hopes of getting a broad scope of

information.

I thank you all in advance for your input as I'm scared and riding that

emotional rollercoaster.

My name is Dennis Miniero. My youngest son Ian (11) was recently diagnosed w/

chiari thru a MRI scan.

His ONLY symptom seems to be nystagmus. He has none of the classic symptoms such

as headaches,dizziness,tingling ...etc. He has been diagnosed w/ a learning

disability since he's 8 years old, which has to do w/ spacial visual perception

problems.

We've been to two neurosurgeons (Esptein/Wiseoff...both in NYC).

Wiseoff suggests surgery.

Epstein stated " go enjoy your son and his life.... nothing needs to be done. "

You can imagine my surprise at these two extreme diagnoses.. Both are experts it

seems from all the various articles I've read .

Both doctors recommended we see the following neuro optomologist. We then went

to visit this neuro optomoloist (Kuperman also in NYC) who also suggested

surgery quoting " quality of life issues " . He stated to me... " Would you do

something that could possibly help you son's quality of life if you had the

ability " ? He stated that the nystagmus MIGHT OR MIGHT NOT... be cured by the

surgery.

All say definitively that he does indeed have chiari,but NONE say that the

operation will definitely alleviate his symptom(s).

Kuperman recommended yet another neurosurgeon (Milhorat again in NYC). Milhorat

will not see my son. I spoke to his assistant yesterday who stated that my son's

symptoms " were not severe enough " to even warrant a visit. I found this to be

extremely unsettling.

Is the surgery proactive or reactive?????

Is this surgery such a minimal risk (I was told less than 1%) that it should

be performed to ....prevent problems that may or maynot happen in the

future.????

Do all chiari patients ...actually progress to worsening symptoms?????

Is chiari an inevitable progression?????

Do I wait till symptoms get worse????

How long is too long to wait????

The timeline.....from symtoms to diagnosis ..was 3 months.

Ian developed nystagmus to the best of our knowledge about 2 months ago...

Therefore from about April 2001 to now July 2001 ..I was told that my son has

chiari and must undergo an operation...

Yesterday I received a call from our Pediatrician who has been my mentor and

has been speaking to all of the doctors above. He has just told me that now they

all agree...after the diagnosis by the neuro optomoligist (w/ exception of

Milhorat..who will noexam my son) that surgery is recommended and this surgery

SHOULD help Ian's quality of life.

He (Lieberman...who is a personal friend for many years )...now also agrees that

this is the prudent approach.

The word .....SHOULD.... frightens me to death............

I'm totally confused and at my wits end.

I have never been presented with so much contradictory information on any one

particular subject. This subject is my son.

I've read page after page after page on the net regarding chiari and thank god

for all the info that is now easily accessible..

I especially thank " chip " for his insight and kind manner.

Thank you all for listening !!!!!!!!!!!!!!!!!!!!!!!

If there is any information or there is a way for any of you to help shed any

light on this situation please contact me. I look foward to your responses and

thank you for you time and effort.

Thanking you all in advance.

Dennis Miniero

dminiero@...