Thank you ((Sue))

He does not yet have a shunt because they haven't been able to figure out the cause. 4 years ago he developed dizziness and had headaches, he was diagnosed with mega cisterna magna. He got better and we were told it was harmless and they would keep an eye on it over the years.

He had an accident in gym this fall, a girl fell off the climbing rope and landed right on him. He blacked out and has since had horrible headaches. At first he was diagnosed with just Post-concussion syndrome until they did his first lumbar puncture. This consistently shows his CF levels to be between 40 and 50 % higher than normal! This is causing great stress on his eyes

Then he was diagnosed with a pseudotumor. Which basically means he has every symptom of a tumor, but not the tumor. In my words, it means they don't know what it is but rushed to put a name to it. grrrrrrrrr

The latest specialist feels he has an Arachnoid cyst. An MRV shows he has a vein behind the mega cisterna magna or the Arachnoid cyst , Or? That is not passing any blood through it due to the extensive pressure. We are waiting for more testing and are trying to remain hopeful.

He is ok a lot of the time. But when he gets an attack it is so painful. They live with me and he comes to me because he has seen me in pain all his life. I lay with him and he squeezes my hand and screams and cries. I encourage him to let it out... I have never believed boys/men shouldn't cry. Hog wash!

I then get him to lay down and whisper soothing words to him. It is now a routine with us. Once he is settle I get him to concentrate on his breathing and repeat over and over just breath baby until the worst of it passes or he falls asleep from pure exhaustion. Poor bugger

As for me, I had two people I could always turn to. My Dad and Lynn. They are the only two people I ever let see the depths of my physical pain. When I was first diagnosed and Lynn was at work, Dad would come and stay with me. He would hold me, rock me back and forth soothing me. I could always count on him.. God I miss that man!

Before I had to place him in the nursing home, even with AD, Lynn would still try to protect me and comfort me. I truly don't know how I would have survived all these years without his constant love and support.

My sister and her kids live with me, and when I am THAT bad I hide out. I try to keep the worst of it from them. It scares the kids to see me in that much pain. And I HATE being the cause of their distress. They already have so much on their little plates. *sigh

This past week they were on vacation and I was alone when the worst of it hit. I didn't eat for 3 days because I couldn't get up and stay up long enough, but other than that, all things considered I did pretty well. But, it isn’t how I want to live. What upset me the most is that I couldn’t go see Lynn! He needs me. If this surgery will help with the ON, I feel I have to try. accck