[You must be registered and logged in to see this image.] This was the look on the face of the tech who scanned my head this morning. When I saw it I said, I'm sorry, I know it looks like a road map in there. She replied: "And I can't believe you are still here." To which I was quickly reminded her: with a a full time job, family, and a life. She then said: "yeah, I mean you can walk and everything." Thats when I told her about the CSF leaking into my inner ear as I stumbled a little towards the door. I am trying to avoid another vacation in the ICU and winter of baldness. But when I got to my car, I had to stop for a moment and take it in... she was right. I am really fortunate to have the best medicine on earth a mile from my office and 9 miles from my house. Despite some of the heartbreaking things I have lost, I am still here. I can still see, think, laugh, love, share, and be. Clearly I am not finished. I am learning to redefine myself by what I can do and not what isn't there. To be sure, I would really like to keep the rest.[You must be registered and logged in to see this image.] But now that really isn't my decision is it? I have been embattled with this ptc/iih demon for 12+ years and have endured 3 brain invasive skull drilling halo aimed surgeries, one full body abdominal placement, currently take 18 medications including Topomax, Metformin, Gabapentin and 2 strictly controlled and alternated narcotics for servere pain. There are more films of my head used for training around here than Paramount Pictures has produced in my lifetime. And as I have found, liquor and crying about it only makes the pain worse. So no, the twitching in your eyes is not abnormal for this disorder, the nerves in your face and eyes are being pinched and squeezed in ways they normally aren't, there are probably a hundred other symptoms you have had that I share with you. Weather change problems, pounding, banging, whistling in the ears, csf running out of the nose when you bend over. You aren't crazy just a little ill. And if I can get up in the morning, walk and talk and see, its a good day and if its a good day I can certainly bring you with me if you want.[You must be registered and logged in to see this image.]

Sam for sharing this, because it shows a positivity that is seldom seen or felt from a fellow IIH'er. Your spirit,determination and wit shine through despite the hard road you're on. I can relate to the shock of the techs when scanning your headm as mine probably lookes not disimilar and ?I think the 2 sub temporal decompressions I have often leave them gaping. I always say as long as I wake everyday to take another breath, another step, and keep going then I'm lucky. I will certainly be happy to come along with you.

As for the csf leak from your ear, please have it attended to because it puts you at riisk for infection, and I would hate for you to be made seriously ill from it.

Please keep us posted on your progress.
Heidi

Thank you so much for posting this, Sam! It was exactly what I needed to read today to remind me to stay positive and focused on the good things in my life with IIH. Just wanted you to know you made someone's day better today!