Well, I left off describing the lead up diagnosis to the PTC. That was fall of 1998, in the panic that followed such a rare illness (I have only met one other person from where I was from that has it) the doctors sent me down to Detroit to get checked by doctors more familiar with the effects on the eye. Kresge Eye institute, I was scared out of my mind, they sent me to the third floor (where all new patients went at the time) There were so many canes I was truly afraid of what I was about to endure. Fortunately, it was NOT THAT BAD. Oh the waits and testing were murder. It was definitely and all day affair for each appointment even the ones at 9am, basically because it was a 2 hour drive just to get there.
I saw the worst doctor in the history of medicine, OK, he wasn't that bad, but he had no chair side manner and was a jerk...I have had a few people refer me to him since, NO THANKS, I would rather be sick or even blind. Fortunately he didn't want me as a patience since I didn't have insurance, and sent me to a wonderful doctor who met us on the 1st floor where he had his office hours. Dr. Ing was the greatest most gentle and understanding doctor I had ever met. He allowed me to quit taking all the meds I was on (Diamox has some pretty nasty side effects) they weren't working anyhow. He also made a point to calm me down about the weightloss, now, I still tried to lose weight (its been a constant battle all of my life) but said that obviously since the problem was not better at a lesser weight, and not worse at the heavier ones, that weight is just a problem that the docs try to blame it on and they really don't know what causes it.
I felt human again. This was NOT my fault. After seeing Dr. Ing twice, I was given the option of surgery or pretty much wait and see. I had already lost alot of vision, and even more of my visual field. When I looked at the charts (the visual field is demonstrated about the size of a 50cent piece) my vision was about the size of a dime. I fought to get medicaid (I was still just a temp at the hospital) til I won. I had the Optic Nerve Sheath Fenestration done. Within weeks I could see an improvement. I continued those appointments til Dr. Ing was sent back to Canada, I cried hard that day.
Just over a year later, I was back in the hospital, back to being sick, and so frustrated. Granted the headaches hadn't gone away yet, but I thought I was done battling.
In 2001, I married the most wonderful man on the face of this earth. We got pregnant. We Lost the baby (all within 3 months) and I wound up back in the hospital with PTC in August.
This time was a bit different though. The man I married was from the Detroit area. I was admitted to a Detroit Area hospital. The ER doctor and Neurologist who saw me there did not treat this as some imaginary fake disease. I was treated for the pain, lovely morphine. Given several muscle relaxers to try to ease the tension from the muscles, something no one had ever done before, and while it didn't help for very long (only about 20 minutes) The next day I was told I would be receiving a visit from a referral he had made to a Neurosurgeon.
Hmmm. I knew about treating PTC surgically, I knew from the support groups, that sometimes they worked REALLY well, and others, not so much. Was I willing to take the risk? I did not know. I had questions, and lots of them. I wanted a family, would the shunt interfere with that? I wanted to be headache free...if not I didn't think surgery would be worth it. When Dr. Daniel Pieper walked in that door, I knew I was getting fixed.
He told me yes, I could still have children, but I may need a C-Section (no problem) and that while he couldn't promise that it would work, he had had alot of success with headache reduction.
That was good enough for me too. On September 11, 2001, yes while the Twin towers collapsed from Terrorism, I had my shunt put in.
The next day was hard, I think it was harder due to not knowing what was going on in the outside world than the actual pain I felt.
I got to go home a few days later, within two weeks the headaches were GONE. Yes GONE, I got a period about 12 days later and that cycle conceived the BUG.
When the headaches started returning intermittently, I figured it was just tension from raising a child, or whatever other excuse I could come up with. But when they started NOT going away again. I called. Surprisingly, today, SATURDAY, at 10:30am, the phone rang, it was his office. They are going to have some tests run to check the function of the shunt. I feel so much better knowing that I am getting the ball rolling to getting back to what had become normal. I don't need to be sick with a 5 year old.
Thank God He knows whats going on. I know in my heart this problem will be corrected quickly.