Thursday, May 6, 2010

Pseudotumor Cerebri makes the national news....

"We thought it was the worst thing we could ever hear when we were told Lauren had a brain tumor," she said. "If we only knew then what the endless battle would be like."

There are very few people in the world, even within the medical profession, who have heard of Pseudotumor Cerebri (also known as Idiopathic Intracranial Hypertension) and of those who have heard of it, even fewer medical professionals have ever seen a case or could diagnosis it. So I was rather shocked when I opened the news this morning and PTC was a major headline:

Also listed was another article of one girl's experience with it:

I have to admit reading the second article was upsetting for me. It was a lot of "been there, done that". But first I want to talk about the new findings and seeing more and more of it in children.

While I wasn't diagnosed with PTC until I was 21, I genuinely believe my symptoms started when I was 5 and went through a year of tonsilitis (and antibiotics) on a monthly basis. I can look back now and see many times in my life that it presented itself, but I blew it off as headaches, being tired, being stressed or other things. I vividly remember a six month period in my teems of vision issues that I never mentioned to anyone, because in my family you were expected to tough through things.

For me, as I mentioned in an earlier post, PTC was a 7 year nightmare of surgeries, blindness, spinal taps, infections and every medication on the planet. Ironically the last was probably the worst thing, and one theory on the rise. That an overuse of antibiotics and over the counter medications is actually a precipitating factor in people with the right biological risks for developing PTC. And why we learned finally how to manage mine in the late 90's I still live every day in its shadow, but from the damage of the surgeries, but also because this is a CHRONIC LIFELONG CONDITION. I know that I am one tylenol or red wine away from my intracranial pressure going back up, but I at least know for me how to keep it at bay. As April's story above shows, most aren't that lucky.

My recent trip to Mayo, as stressful as it was, was also a major reaffirmation of how lucky I was. I was lucky to find the right doctors, including the amazing doctor at my college health clinic who recognized what it was after about 3 weeks of testing. To have the best person in the country on the disease at that time be at a hospital near where I lived and to have doctors who wouldn't give up. I would also add to my luck that I was headed into the medical field myself and had the knowledge and research facilities to start to explore this horrible disease.

But even more than that, I was lucky at my outcome, and I lose track of that often when I deal with the surgery damage issues. Every single doctor who examined me at Mayo was shocked at for the path my disease took (I was about as bad as you can be for all those years) my vision today is totally intact and other than a slight misalignment of my eyes from a surgery issue (another surgery during PTC not the same one as my leg) my vision is as good as it was before PTC. For all I went through medically, no one would be shocked if I had ended up blind. I owe my Neuro-Ophthalmologist, Dr. Deborah I. Friedman, daily for the fact that I see today. And I have to admit I have not thought about that fact in a long time until my time at the Mayo Clinic.

In one of the articles the point was made about people not "getting it" and them writing it off because "well you don't have cancer". For me that was one of the hardest parts of the active phase of my illness, it being an invisible illness. I remember often saying I would rather have lost a limb or had some outwardly visible illness because then at least people would realize it was real. When you look perfectly healthy and you have something no one has heard of, yet you are having to miss classes, skip work and hide out in your house because your head is too heavy to lift, you are very quickly labelled as a hypochondriac or it must be all psychological. Friends get bored with it and move on, employers tire of it and you lose jobs and you find your world become more and more limited.

I will say another way I was lucky was because I had Dr Friedman who was so involved in the disorder nationwide, my world was greatly expanded beyond many. Together Dr Friedman and I started the first national support group for people with PTC, we did some of the first national clinical studies and I got to meet some really amazing people living with PTC.

In April's story she talks about resiliance and fighting through. It always seemed ironic to me that the more people I met with PTC the more that seemed to be a characteristic of those with the disease. I can think of maybe one person of the 100's I met and talked to who ever really gave up. Yes we all had our moments when we broke down, where it got the better of us, and many times when we wanted to quit, but it seems we always found that drive to get back going again.

As I have shared my story with PTC with people and through this blog I often get asked would I change it if I could. I definitely wouldn't. I think part of the reason I am who I am today was because of those years. I learned more about me and about survival and about the true meanings of friendship and love while I was fighting PTC on a daily basis than I have at any other time in my life, at least up until the last 6 months.

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