I have been in a "wait and see" mode for the past month. Wait for an undetermined amount of time and see if the blinding headache, tunnel vision, and whooshing sound in my ears to return. Then when those symptoms come, I get to call for a dreaded lumbar puncture order to measure my opening pressure. Needless to say this game is not nearly as fun as the birth waiting game; where you get to spend nine months eating all the donuts and fried pickles you want and then a baby comes. The result of the current waiting game is a plumbing apparatus in my brain, not a cuddly baby. Patience has never been a virtue of mine. I desperately wanted to wait and learn the gender of all three babies at birth. However, with each baby I buckled at the infamous 18 week sonogram. My lack of patience has made my panic worse many many times. I am sure most medical professionals tag me as a pushy lunatic when I continue to hound them for time lines on treatments or illness durations.
I went to go pick up some medical records from my eye doctor Tuesday and he asked how things were going, so I went into my pitiful diatribe about waiting. He had a few moments, so he suggested he take a look at my optic nerve. A swollen optic nerve had been a hallmark for my pressure being high. It was like he could tell I wanted to know something concrete about the brain situation. He took a fancy-eye-doctor- flashlight and flashed it into my naturally dilated eyes to get a glimpse of the back of my eyeball. The margins of my left optic nerve were "undefined" meaning it had begun to swell again. Hallelujah! A world of relief lifted off my shoulders.
Now you are probably questioning why I was so relieved...huh? Here is where my ridiculous thinking comes into play. I had been having minimal symptoms (1) headaches (2) mild nausea (3) ringing in my ear (4) unreliable vision (5) stiff neck. In fact many IIH sufferers endure these symptoms for years before a diagnosis is made. In my heart I knew the pressure was rising, so I knew that the condition was back. However these five symptoms are not acute enough to warrant a new VP shunt to be placed. Leaving me to wonder if I was making up the symptoms and leaving me with no treatment and the possibility of never feeling healthy again. Furthermore no treatment was like getting lost in a black hole. This stung for me especially when I had a treatment (VP shunt) that was working beautifully not two months ago. So when the concrete Papilledema (swelling of the optic nerve) was seen, I became confident that I would get treatment because in the medical world Papilledema was acute enough to act on. I would NOT be lost in the black hole that many sufferers fall into and never escape. I would feel normal sooner or later.
So I am a bit bummed the condition did not go into remission (I was not hedging my bets that it would go into remission), but I am relieved I have acute enough symptoms to get treatment. Ridiculous...right? I never claimed I was a logical thinker. I will have an official eye exam March 6th and meet with Dr. Basts March 12th. Until then, I will have a lot more patience because of my backwards thought process and my eye doctor's ability to act.
