From: Darcie Lutz <bleel12197@...>
Subject: [ptc] New Member in Ohio
To: ptc@yahoogroups.com
Date: Monday, December 8, 2008, 7:02 AM

Hi All!

I am a new member to this board, and relatively new to IIH/PTC, just
diagnosed 12/07.

My symptoms started around Dec. 1st with a daily headache which
progressively became worse. After 2 ER visits with pain meds and
normal CT, and the MDs telling me it's just migraines, I finally
asked for an LP. Being a nurse, I knew something was wrong, not just
migraines. The opening pressure was 31-34, and I had some slight
swelling of the optic disc margins. They started me on Diamox at the
end of Dec. At first I felt better, but my body soon adjusted to it
and I was soon at the max dose within a few weeks. I could tell when
my pressure was elevated because my eyes and ears felt as if the
pressure was pushing on them. I had 4 more LPs before I was also put
on Indocin at the begining of April. After a few weeks on the
Indocin, I started to feel the pressure building up more and more,
with no relief. I went to work on 4/23, and within 2 hours, my vision
was blurred in both eyes and I couldn't read the monitors. I went
down to the ER, and after 3 failed attempts at an LP, they finally
called a radiologist in from home to do an LP under flouroscopy. The
radiologist got the LP on the first attempt, and my opening pressure
was 41-47. So, as he was taking off extra fkuid, he took off too much
and left me with a closing pressure of 8. I knew that would mean a
severe low pressure headache for me, as it usually did. I was
released Thursday morning (4/24) and went home to recover. The ER
notified my neurologist and neuro-ophthalmologi st about my visit and
opening pressure. I got a call later that day to come in the next day
(Friday) to see another neuro-ophthalmologi st who specializes in
IIH/PTC. Battling a severe low-pressure headache, I went to my 2 PM
appointment. After my exam, the neuro-ophthomologis t consulted with
neurology and neuro-surgery, and made the decision to admit me. The
plan was to admit me Friday, normalize my CSF pressures, and place a
shunt Monday. They took me off the Diamox and Indocin, and after a
day or so, I could feel my pressure building up again and getting
higher. My surgery was not able to done on Monday 4/28 because the
neurosurgeon was called out of town, but it was done on Tuesday 4/29.
He placed an LP shunt with a built-in slit valve. Almost
instantaneously, it took away the high pressure headache. I had not
had any problems with high pressure since the shunt was placed. I
have occasionally had a slight low pressure headache, which they said
I might have as my body got used to normal pressure.

Since my shunt does not have a programmable valve, it has been over
draining quite a bit over the last few months. It has only gotten
worse over time, with me having developed a Chiari Malformation from
it over draining. Well, my neurosurgeon says I need to have a shunt
revision to have a programmable valve put on my shunt to help reverse
the problems from over draining. So, this is not an option for me,
but a surgery that is needed now to prevent major complications. I
tried to hold off for a little while on the surgery, but it is only
getting worse as the weeks go on. It is beginning to affect every
aspect of my life. The neurosurgeon does not want me to wait any
longer, so he has scheduled my surgery for Dec. 29th. I am scheduled
to have a Medtronic Strata programmable valve placed on my LP shunt.
Hopefully this will help.

I am glad that I got the shunt, even if there are some minor
complications. The high pressure headaches and constant LPs were far
worse than having the shunt. Hopefully no more revisions or a VP
shunt will be needed after this surgery. I am lucky to have one of
the best neurosurgeons for this disease, Dr. John McGregor at the
Ohio State University. He is awesome, and very knowledgable about
IIH/PTC.

DLynn