Pseduotumor Cerebri

To say we had an eventful Christmas would be an understatement. We had SO much planned for the latter half of December but sometimes big scary things happen and change everything. And this happened to us.

December 16th we hit the road to drive to Florida. We stopped to spend the first night in Dallas and during this short drive I noticed I was having a headache and my vision was a little blurry. My ears were stuffy too, so I attributed this to maybe a sinus infection. The next morning we drove another long day and again I had a bad headache and my vision was off. So Ben did most of the driving. We stayed that night in a hotel, and the morning of the 18th we finished driving in to Merritt Island to my parent's house.

The day after we arrived in Florida I went to an urgent care clinic and was given a prescription for antibiotics. The doctor suggested I may need to go to the hospital if I was having blurry vision. I tried the antibiotics for a day hoping I would feel better. The next morning Ben, my sister and myself woke up and headed to Orlando to go to Universal Studios for the day. Three hours into this trip I told them I needed to go to the hospital, so we did.

I went to Orlando East hospital where I was given an MRI and a CT scan which showed nothing wrong with my brain. I spent the night in the hospital, and was discharged with instructions to see an Opthomolgist. The next day Ben, Betsy, my Dad and sister went to Disney world and my mom and I hung out at the hotel. Then the next day I saw an Opthamologist (my cousin works for one in the area, what a God send!). He looked in my eyes, discovered my optic nerves were terribly swollen and directed me to go straight to an emergency room and let them know I probably needed a spinal tap.

SO, we headed to the closest hospital, in Melbourne, Florida. The doctors looked at the report from the opthomologist, heard my symptoms and that I had already had an MRI and CT scan (which they later repeated) and they gave me a Spinal Tap. This immediately relieved my headache and vision problems. I was admitted to the hospital December 23 and would stay there until December 27th.

What the doctors discovered is I had elevated pressure on my brain. I had too much spinal fluid and it was causing all these problems. I have a condition called Pseudo tumor Cerebri. We talked about putting a shunt in my brain (scary!). The CT scan showed I have exceptionally tiny ventricles in my brain and the neurosurgeon would not do this surgery on me. We started me on a prescription called Diamox, which is a diuretic that slows the production of spinal fluid. I had a second Spinal Tap, was deemed stable enough to travel and was discharged.

The next morning I boarded a plane and flew back to Texas. Ben had flew back with the two girls the day before. I had completely missed Christmas. I missed Disney world. I STILL haven't opened my Christmas presents, they are all in the back of my car that we left in Florida. I missed my best friend's wedding on New Years Eve.

Flying back was very rough. I was utterly weak and exhausted. The light hurt my eyes so I wore sunglasses the whole trip. I had to have someone push me in a wheelchair through three airports. But I was SO glad to be home.

As soon as I landed Ben told me that with the help of a very dear family friend who pulled some strings with our local hospital, I got in to see a neurologist the day I arrived back to Texas. The next morning I had an appointment scheduled with an opthomologist to see how my vision was progressing. This was REALLY wonderful to come home and immediately be in the care of a team of doctors who wanted to make a PLAN to treat my condition. In the hospital in Florida it was made very clear they just wanted to get me stable, and get me home.

The day after my appointments we went to buy me some new running shoes. And I cut and donated 10 inches of my hair! I was just SO exhausted I couldn't even brush my hair. I'm enjoying that my new short hair is so low maintenance.

It's been two weeks since I've been out of the hospital and it's like a night and day difference. Our plan of treatment for my condition is to keep me on the maximum dose of this medication until my optic nerve swelling is gone. It's already improved significantly. Losing weight may very well CURE my condition so I've obviously thrown myself whole heartily into eating healthy. I've lost 20 pounds since this ordeal has started, and losing just 20 more may resolve my symptoms.

I've been back to work since January 2nd, we're in registration at work. I'm pretty exhausted by the end of the day, but I'm able to do pretty much everything I could before all this happened. My vision isn't quite 20/20 but I'm very hopeful that I'll gain back the vision I've lost. And I have larger blind spots than people typically do.
I had my first follow up with my neurologist yesterday and he's happy with my progress, and so am I. My medication has side effects. My hands and feet tingle. I have a bad taste in my mouth. I get really tired. But it's working! I haven't had headaches. My vision is improving. I follow up with my optho in a couple weeks, and the neuro in another month, and I'm hopeful for some more success with my weight loss. I'm hopeful this will cure the condition I have!

SO, it was a crazy, crazy, Christmas break. But I'm lucky to be where I am. And my girls still got to spend Christmas with my family, which I appreciated. And I really look forward to what this year will bring. We've completely changed our eating habits. There is no junk food, no soda in our house. I feel like we will look like a completely different family at the end of the year. I'm sad that I missed seeing the girls open their Christmas gifts, and I missed Disney World with Betsy, and I missed Megan's wedding which looked amazing. But I now know that what happened to me was life threatening. So I feel pretty lucky to be where I am today.