My name is Amanda, I am from East TN, and was diagnosed with a pseudotumor in February 2011. I have had unexplained headaches for a number of years, they were horrible. At the beginning of last year began having vision problems - I would blink & everything would go black, floaters, I would see "stars". I went to an eye dr. and he diagnosed me immediately and sent me to an eye specialist. They run several blood tests, MRI, and referred me to a neurologist. They also told me that I had severe optic nerve edema. The neurologist ordered a spinal tap and told me that I would be put on a diuretic. The results of the spinal tap came back normal so the nurse told me the dr. wanted me to put me on topomax. I told the nurse that I was already on other meds & did want to start taking something else. Why is the dr. trying to put me on something we did not discuss? She told me if I didn't take what the dr. prescribed, there was nothing more he could do for me.
At my follow-up with the eye specialist, he seen no improvement with my eyes & I believed they were getting worse. He referred me to an neuro-ophthalmologist in Nashville. I was diagnosed again with a pseudotumor and put me on diamox. He explained that a spinal tap could come back within normal levels because they could fluctuate. I was taking a total of 1200 mg a day of diamox with little relief & it actually made me feel worse. I called the dr. on a Monday morning, after sleeping all weekend & having severe headaches when I sat up. He told me to come to Vanderbilt as soon as possible. I live 4 hrs away so my sister took me that night to Nashville & we got to the er first thing the next morning. The first thing they did was a spinal tap. My pressure was over 60, I was told they were admitting me & putting in a VP shunt. I was in the hospital for 4 days.
About 6 weeks after the surgery, I ended back at Vanderbilt. I had been throwing up for almost 2 weeks with no relief. They tried to "tap" the shunt to check my pressure but had to do another spinal tap to check for slip ventricle syndrome. The pressure was kind of on the low side but I went home & started feeling better. I went back to my dr. for a follow-up about 9 weeks after having the shunt put in. He noticed the site where the er drs tapped my shunt was not healing. He gave me a prescription for a cream & told me to come back in 2 weeks. I put the cream on just as he told me; however, my skin healed [/b]under[b] the shunt with the shunt being fully exposed.
Needless to say, I was admitted and had the shunt removed. They had to put me in ICU to be under 24 hrs monitoring and given 2 kinds of antibiotics. I was tested each day to make sure there was no sign of infection. The surgery for the new shunt was done 3 days later. I was sent home with a picc line & lots of antibiotics.
My kids were so scared for me, as was my mom & other family members. It was a scary time for us all. Since the 2nd shunt, though, I feel much better. I have not felt this good in years & rarely have headaches, nothing like before the shunts. I live in constant fear that my shunt will not last long. I don't know what I will do if I have to go through all this stuff again, so soon (again). Although I have to say that I am very blessed to feel better and to have finally found a good dr. that did everything he could to help me.
God bless all of you & I look forward to getting to know other people that suffer from this!
Subject: Amanda diagnosed Feb 2011 
Sat Jan 28, 2012 11:51 pm
What a horrible time you had, and thank goodness you came out the other end of that feeling much better. I totally empathise with what you and your family have been through, and I do hope you never go through it again. Having a good doctor is half the battle, especially if he knows his IIH stuff.
to the group Amanda! It sounds like you've been through a rough time 
I'm glad the second shunt is working for you and you have finally got some relief. Its great to have you with us xx
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