I live in Kansas City, Kansas. My Neurologist is Dr. Kimberly Cochran. I was at work On July 28th, waiting on a customer, when my left hand started to feel tingly. I tried rotating my left shoulder, thinking that maybe I had a pinched nerve or something, but nothing helped. The tingly feeling was getting worse, when my left eye went haywire. It was like from the center of my eye to the outside edge was just gone. I couldn't see the left side of anything I looked at, It was scary!!

I have been told that I have been having migraines (my mother-in-law diagnosed me, shortly after my husband I married, 14 years ago, so I thought that I was going to have one hell of a migraine. I got up to go lay down in my office, when I noticed that my left knee down to my foot was tingling too. I started to get nervous at that point, because my mother has had two strokes, and I thought that maybe I was having, or going to have, one.

I called my husband, and he came and took me to the ER. After waiting 3 hours (glad it wasn't a stroke!!)they took me back to a room, examined me, and said that I was having an ocular migraine. My husband was livid!! He said that he had never heard of a migraines causing numbness and tingling, before. The Dr. on call decided to take a CT of my head (probably just to shout my husband up) By this time, I was having the worse headache of my life (which is really saying something, because I have been have debilitating headaches for at least three years now).

They gave me a shot of morphine, which dulled the pain a little, but dulled my mind totally. I was in and out of it the rest of the night. My husband told me later, that the Dr. who read my CT said that I had "an unusual spot on the right side of my brain", but sense he saw no bleeding he thought I would be fine. He sent me home with instructions to see my GP the next day.

My GP told me that I was having migraines, but sent me to get a MRI. He called me back with results and said, "They found a couple of things, you have a cyst, and empty sella, that's s.e.l.l.a, your headaches could be coming from that. Have a good weekend, bye." I was left holding the phone, not knowing anymore about what's going on with me than before, but now I had this 'empty sella' thing to worry about.

Just a little side note, this was the same GP that told me that if I soaked my feet in scalding hot salty water, then the warts on the bottom of my feet would go away! We have found a new GP!!!!

I called my GP's office, the next Monday, and was told that my Dr. was on vacation, but another Dr. in the same office had looked at my chart and said that I was scheduled to follow up with a Neurologist.

Well, as you now, my neurologist wanted me to bring in copies of medical records and all my films. When I went to pick-up my films, I noticed a report was attached to each one (one of the CT and one for the MRI). Both the reports said basically the same thing, 'fairly large mass, right front temporal lobe, probable Arachnoid cyst', and then on both, 'so-called empty sella'.

That was the first time I was actually given a name for what I had.

Well, I got on the internet right away to read up on them, so that I'dknow what I was talking about when I went to my Neurologist. I found out that Empty Sella Syndrome is were the sella(the pocket that the pituitary gland sits in) fills up with CSF and smashes the pituitary gland up against the side of the sella. It doesn't hurt the gland and usually it functions normally.

I also found your web-site and a few others on the cysts. And my symptoms match most of the other horror stories that I've been reading on this site. My neurologists has me scheduled for a spinal tap next Tuesday. And she said that the pressure in my head in causing optical nerve damage and that I might lose my sight. She has also scheduled me for a full eye exam with an optometrist.

She says that the results of the various tests will determine were we go from here. She also told me that my cyst, roughly the size of a golf ball was not the cause of any of the symptoms, although it takes up my whole right frontal lobe practically, but the empty sell syndrome that is causing it. She says that many people have cysts even larger than mine and don't have any symptoms at all.

I really don't care anymore what they think is the cause, just as long as they do something!, anything! The headaches are practically nonstop, I walk like I'm drunk, and I constantly feel like I'm riding a roller coaster.

I don't know what to do, if anybody has any suggestions, or helpful hints, please e-mail me at This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Ang update:

I can't remember the  year but it was before Cassius was born in 2005. I had many many conversations with Ang before she had her surgery and she knew she was going to die because her mother also bled out during surgery. She had made her peace with me, but not her family. As most families go they don't want to think there is anything wrong with you.

When her daughter got on yahoo groups to blame us for supporting her and her dying during surgery a piece of my heart died too. She was one of the first people I spoke with on the phone. She was one of my greatest supporters and I miss her to this day.

I do NOT take you as just some person I bat around with like a cat does a mouse because I am trying to get us answers all the way around. I think of you as a real person that has real issues and that you can die in surgery if you don't have the right doctor. You just have to trust yourself and your instincts.

Catherine 2014