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What to do???

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Unread 07-28-2009, 01:15 PM   #1
glittergirl
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Join Date: Feb 2009
Location: OHIO
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Default What to do???

Hello
It's been a while since I have been on here... I had a VPshunt put IN (FIRST TIME) of AUG of 2008 (it will be a year here in about a week!) ALL year since this shunt was placed I have had HORRIBLE sickness I had pains with my adominal area at first then the headaches came! Since then, on and off mostly on- I have been getting REALLY sick with Headaches BAD headaches ! I am way more worse off now then even before the shunt was put in. It feels like ever since the beginning my body wanted to or is rejecting it! Anyways, for the last 6 months whenever I would get sick it would start off with chills-headache-REALLY BAD FREEZING COLD CHILLS Than BAMM! The worst headache you could EVER imagine! Followed with temps from 100 to 102! When I get like this I cant really talk, open my eyes, or even walk by myself & my head throbs to my heart beat which is heavy & hard pounds? And the weirdest thing : This lasts EVERY time for about 5 to 6 hours then its gone like I am fine! It also comes right out of the blue so i cant really plan ANYTHING in my life! I have went into the hospital with this atleast 4 times because the head pain was SOOO BAD I could NOT handel it & BELIEVE me this pain I get is QUITE often & I just try to deal with it I have had my shunt Tapped 4 times and every time it came back infected-but the infection they found was not a type of infection that is found in a shunt???? Yeah, EVERY DOCTOR TELLS ME SOMETHING DIFFERENT! I honestly have NO clue of whats going on with me! The last time I was in the hospital here in town, they finally decided to send me to the Cleveland Clinic. When I was there they gave me another shunt TAP and blood cultures...ONCE AGAIN, Nothing grew in ANY of my cultures! And my tap was normal. But yes I was on antibiotics the intire time I was in the hospital. When they told me to leave cause I was fine & they didnt see anything wrong with me-I was home for about 16 days until the headache & fevers came back! Now that its been about 28 days since I am home I have been sick like that 5 different times! And the last time it lasted for 2 days & was the worst yet! I am sapposed to go back to the Cleveland Clinic to have my surgery redone! The Doctor/Brain Surgen there thinks I am having problems like this due to NOT having my cyst taken out in the first place! My Brain Surgen here NEVER took out my cyst that is right smack in the middle of my brain (third ventrical) and just gave me a BIOLATTERAL VP SHUNT. I guess that means I have 2 shunts in my head then gathered at my side...I freak out EVERYDAY knowing that I have this-I mean, I can feel it and its been going on a year and I am STILL having pains where the holes are in my head and down my neck & laying down and all that etc. I dont do much and I DONT live life like I used to in ANY way IM ALWAYS SICK! So...the Clinic thinks that I should just get this cyst taken out-Having a 1 time risk then a lifetime of risks with a shunt! I was also told that I may need to get a shunt after my cyst is taken out-for that happens sometimes And then again, I can be normal & live life normally with no shunt ever again! I also know that there are a TON of risks & THAT SCARES ME SOOOOOOOOO BAD! As in DEATH, loss of speach, memory,etc. Has ANYONE here had BRAIN SURGERY AT THE CLEVELAND CLINIC? I do know that CLEVELAND CLINIC is the WORLDS 6th BEST HOSPITAL FOR BRAIN SURGERY- BUT I WOULD LIKE TO TALK TO SOMEONE WHOS GONE THREW IT FROM THERE!!!! OR HAS ANYONE ON HERE HAD THE PROBLEMS LIKE I AM HAVING- HAS ANYONE HAD A cyst & it stayed in & just had a SHUNT PUT IN THEN HAD PROBLEMS TO GET JUST THE CYST TAKEN OUT AFTERWARDS????? I REALLY need to talk to people about this! I dont know what I should do! Should I just go for it? because I DO NOT WANT THIS OR ANOTHER SHUNT IN ME EVER AGAIN!!!!PLEASE ANSWER THIS SOMEONE! I THANKYOU
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