And so it begins. . .

Okay so I am posting now. . .

I wanted this here so that some of you will be able to catch up on this journey to Mayo and beyond. I am VERY excited for this trip, it has been a long time coming. I feel like I am finally going to get some answers next week.

For those of you just coming into the story here is a brief recap. . .

Almost three years ago, I got the worst migraine ever while at the Hillsboro Craft Fair. The following Monday I awoke with very bad vision, flashers and floaters everywhere. The world had definitely dimmed in two days. Naturally I was consumed with fear, I wanted to be able to see so I called my eye doctor. While at the appoinment, Dr. Gleason said that my optic nerves were swollen and that I needed an MRI of my Brain immediately. She was hoping it would show that I had Psuedotumor Cerebri. Instead the MRI showed that I had a significant amount of white matter changes throughout my brain. This lead the radiologist to believe that I may have Multiple Sclerosis (MS). This was a devastating blow, I have seen the effects of MS on my Aunt, I didn't want to go through that.

That began the three year journey I have been on. The Neuro Opthamologist I have seen since the beginning, fully believed that there was no MS and it was in fact Pseudo Tumor Cerebri and could be treated with a medication call Diamox. This medication worked for a while however at some point in the journey, it quit working. I believe it was about the time the doctors decided to try an MS medication. Once I was on that I became very puffy and everything started to swell. So I took myself off of that, but the damage had already be done to my optic nerves and the continued to swell. It came to the point where there was no more room to swell and something had to be done. One option was a shunt that would drain the excess fluid off my brain that was causing the swelling. The other option was something called Optic Nerve Sheeth Fenestration. This would have involved cutting small holes in the sheeth that lines my optic nerve again to drain the excess fluid that was causing my nerves to swell. The risk there was that my nerves were so swollen that the doctor would run the risk of cutting my nerve too, causing blindness. Naturally we chose the shunt. . .IT WORKED WONDERS! My nerves are now back to normal size, but there was damage from the intense swelling. . .damage that will never go away.

In my latest MRI, the white matter changes have no started to invade where the optic nerve meets the brain, causing some significant sight problems. Yes I can still see, yes I do still drive, and no I won't stop until the doctors tell me too. The last time I saw my neuro opthamologist (which incidentally was my third trip to Omaha in three weeks), I told her that I was DONE, decisions needed to be made and a treatment needed to be chosen. She agreed and said lets go to Mayo!!! Needless to say that was relief to me and I am ready to find out what can be done for me if anything.

Lacie