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i have had hydro since i was 2 wks old i had 12 surgries than and i had
my surgery at queen of the valley and the shunt was inserted on the
outside of my head and it fell out than after like 3 -5 surgeries there
my shunt even became infected i was airlifted to orange childrens
hospital and i had my shunt put in good there and first revision was
first grade after i had it put in and i had 3 surgeries in first grade
and this year ive already had 2 revisions because my shunt keeps stop
working. so far now i have had 3 x rays and ct scans and everything
shows up normal and my shunt is draining but im feeling pressure
headaches and am sleeping all day i get really sleepy they keep asking
are you pregnant and im not they constantly check but now they are
telling me that mayebe i need to get a spine mri to see if something is
wrong with my ba ck but its like its not my back they dont wanna listen
yea i get migrains thats y i feel this is diffrent because ive felt just soo tired its like a pressure headache... thats amazing what youve been through i have never talked to anyone with what i have i had gone 10 years with no revisions from first grade to this year i am 19 years old and first grade i was 9 so but thank you soo much for the advice i need to go bak to my neuro next wk because i feel just horrible
yea i get migrains thats y i feel this is diffrent because ive felt just soo tired its like a pressure headache... thats amazing what youve been through i have never talked to anyone with what i have i had gone 10 years with no revisions from first grade to this year i am 19 years old and first grade i was 9 so but thank you soo much for the advice i need to go bak to my neuro next wk because i feel just horrible
----- Original Message ----
From: Diana Pozzi <dfpoz@...>
To: hydrocephalus@yahoogroups.com
Sent: Tuesday, October 7, 2008 11:27:24 AM
Subject: Re: [hydrocephalus] (unknown)
From: Diana Pozzi <dfpoz@...>
To: hydrocephalus@yahoogroups.com
Sent: Tuesday, October 7, 2008 11:27:24 AM
Subject: Re: [hydrocephalus] (unknown)
Erin:
I had several shunt replacements from the ages of 3 mths (when I was diagnosed) to 2 yrs of age. I had one revision when I was 15 and six yrs later had the tubing removed because of an infection. I've been without tubing (considered arrested) for over 25 yrs.
Over the yrs I've had headaches & not felt well when my shunt wasn't functioning, but it was still connected. A CT scan wouldn't have shown anything, it was a short term thing that resolved itself. Usually, docs go by a number of things--whether you are throwing up, have a fever, etc. But everyone is different. I, for example, don't have fevers w/illness, so judging on that alone would be an inaccurate measure of whether or not I was sick.
When I had the staph infection (that led to the tubing removal), I felt fine until the night I was taken to the ER. I had a terrible headache that wouldn't quit, no appetite & was extremely dehydrated. Within fifteen minutes of my surgery (I had it done w/a local anesthetic) I felt better! I was eating & just felt generally better than I had.
For me, headaches also aren't necessarily a sign, in & of themselves, of something being wrong. I occasionally have hydro related, pressure headaches. Since I have lived w/them all my life, I know the difference between them & a tension or migrane headache. Yes, I have light & sound sensitivity, but not nausea or other symptoms that n/s usually ask about. Unfortunately, a lot of medical professionals confuse hydro/pressure headaches (w/light & sound sensitivity) w/migranes, when they aren't the same at all! I've had friends who have had both migranes & hydro related headaches, they have assured me that there is a BIG difference!
Just remember that everyone is different/unique & to ask questions. It is a big help to keep a log of questions to take w/you to the n/s, or any doctor's appt.
Take care.
Diana
--- On Tue, 10/7/08, Erin Nashed <nashederin@yahoo. com> wrote: From: Erin Nashed <nashederin@yahoo. com> |
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