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 stefanie dx march 2008

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harmony21506
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PostSubject: stefanie dx march 2008   Fri Sep 13, 2013 3:12 pm

hi everyone, my name is stefanie. i am from wi, usa. i am a single mom of two great kids age seven and three, girl and boy respectively. i had a very severe reaction to sulpha in 2007 which lasted about six months and turned into serum sickness. after that is when i began to have weird and unexplainable symptoms. i went from dr to dr, er to er, with no one being able to tell me anything besides they thought i was crazy. my optometrist was the one to finally find the swelling on my optic nerves and knew to send me to nuero right away. at the time, there literally was only one or two results when searched on internet. the drs told me it was something that would go away on its own in two years or so. haha. i started on massive amounts of topomax and lasix; and stayed that way for a long time. but the topomax made me literally dumb and living in a haze, i couldnt think straight or remember anything. the lasix was depleting my system of potassium no matter how much otassium supplement we tried to put in me; which meant many er visits for iv potassium which if any of you have ever had it you know it is like liquid fire flowing in your veins the entire time. its miserable. the fall of 2008 i finally gave in and let them do my first vp shunt, which went off without a hitch and to this day(knock on wood) have never had any problems with it. by 2009 i was losing vision fast, and nothing was helping so i ended up having the onsf surgery. late 2009 i had my second vp shunt put in. i ended up with meningitis days later and the er kept sending me home despite my head swelling more each day. after five days of going to the er, they finally had nuerosurgery come take a look at me and knew what was wrong. i almost died. i spent about 5 weeks in the hospital and another 6 weeks at home on iv medication every 8 hours. since then i have had a few more revisions on that same shunt, once due to blockage, once due to a hernia being twisted around the tubing in my belly. i had 26 surgeries in less than five years. then i spent about a year and a half symptom free until about 6 weeks ago. i had been on disability this whole time and had begun to go back to college thinking that things were better now. but shortly after i started school my symptoms began again. they were different this time than they were in the beginning. so none of the drs believe me. i had ct scan, saw nuerology nuero opthomology er drs etc. no one saw any reason to believe me that my pressure is up as there is no swelling on my optic nerves and my ct was clear of any blockage. i begged them to do a lumbar puncture even though they are miserable and have had about 50 of them in the past. i finally got a dr to order one and although my shunts are set at 8 and 10 my pressure was at 17.5. so that is how things have gone so far, and i can update as needed.
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Wylee
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PostSubject: Re: stefanie dx march 2008   Sat Sep 14, 2013 4:20 am

Hi Stefanie and Welcome 

I am so sorry you are having such a horrible time trying to get back the relief that you know you should be feeling.  Even though your shunt may not be blocked (was the CT Scan a myelogram?)your pressure is much higher than it should be for having two shunts.  BTW, I never had paps so that is not an accurate measure of IIH.  It sure sounds like there is something wrong in the shunts that they are allowing the pressure to get so high.
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Heidi
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PostSubject: Re: stefanie dx march 2008   Sat Sep 14, 2013 5:39 pm

Welcome to the group forums Stephanie, I am so pleased you joined us, and also I am so sorry that you are having such a terrible time, hug I went through a similar experience my self so I know how you feel. As Linda has said you don't have to have pap with high pressure, and so they shouldn't rule anything out based on that. I do hope that they get to the bottom of this for you, and I know it must be so frustrating and disheartening. We're all here for you and with our fingers crossed.
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medmisfit
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PostSubject: Re: stefanie dx march 2008   Mon Sep 16, 2013 3:48 pm

Hi Stefanie..just wanted to add a late welcome! It really doesn't make sense that your pressure is 17.5 w/ 2 shunts set at much lower settings, and it's not raising flags for any of your doctors. Stress can increase symptoms, but shouldn't affect pressure. I'd keep a symptom log including meds/activities and just keep talking until someone listens. I recently had steroids for 5 days and my symptoms were AWFUL..not sure if it has any affect on pressure, but definitely makes for miserable existence and has taken a couple weeks to even out again. Hopefully things will calm down for you soon, so hang in there!!!

Take care,
Julie
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Wylee
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PostSubject: Re: stefanie dx march 2008   Mon Sep 16, 2013 7:41 pm

Julie, I think you summed it up well.  17.5 is awfully high for two shunts to be acting normally.  
I think that most shunt valves use numerical settings that do NOT correspond to pressure values, which of course makes things even more confusing.  When my Codman Hakim valve is set at 90mm my opening pressure on a lp in 12.5  
I think something/someone in your medical group is confused.
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