My journey began very simply at an regular eye doctor's appointment on Monday, January 13th at Illinois Eye Care in Spring Valley, IL. It had been 2+ years since I had been to the eye doctor, so I was way overdue. I hadn't noticed a change in my eyesight, but I was looking forward to updating my frames. :)
When I got to the office and filled out the paperwork, I was offered an additional test that my insurance wouldn't cover. It was a picture of my optic nerves that was "highly recommended" by the doctor. The additional cost was very minimal, so I went ahead and agreed to it, and boy am I glad that I did! When the doctor came back in to go over the pictures and the rest of the tests, she informed me that my left optic nerve appeared inflamed and swollen while my right looked normal. At first she told me I needed to get in to see my regular doctor as soon as I could, but then she decided to refer me to an ophthalmologist. They called later that night and told me I had an appointment on Thursday, January 16th with Dr. Finkelstein.
Dr. Finkelstein was very nice. They ran the same battery of tests that Dr. Klein did the previous Monday. They also took pictures of my optic nerves again. I was there for 2 hours and was the last patient to leave. Dr. Finkelstein agreed that it was odd that only one optic nerve would be inflamed. He said it could just be the way my eyes have always been, or it could be something more serious. He did mention the possibility of a pseudo tumor, but he thought I may be too old for that. So, he referred me down to St. Francis in Peoria to an Dr. Kattah and his partner, Dr. Bonnie Keung. Dr. Finkelstein said I needed to get down there either tomorrow (Friday) or the following Monday. I said that Monday, January 20th worked best for me since we were already off of school that day.
By that time, I am already freaking out. Everything had been moving along so fast, so of course I jumped to the worst conclusions. That Friday, I heard from Dr. Finkelstein's office. I had an appointment for Monday, the 20th at 3:30. Dr. Finkelstein even called down to set the appointment up himself.
Luckily, Broch had Monday off as well so neither of us had to miss work. My parents were kind enough to spend the day with Tess while we were in Peoria. We got down to Peoria early and had lunch then headed over to the hospital. Once we checked in, it wasn't long before we were called back. Again, I had to go through the same battery of tests and have pictures taken of my optic nerve. Then they dilated my eyes. Having had this done 3 times in a week, I was pretty use to it by now. Dr. Keung came in a looked at my eyes and the pictures. We decided that to get to the bottom of this we needed to do an MRI. She wanted pictures of my orbits (eyes), brain, and the blood vessels at the back of my neck. I could either have it done in Peru or in Peoria. I opted for Peoria so that everything was done at one place. They said they would call with an appointment time after getting pre-approval from my insurance company.
So, unfortunately we went home without any new information. She did mention pseudotumor cerebri again, and said that if the MRI was clean then next step would be a lumbar puncture to see if there was a lot of pressure in my spinal cord fluid. After having such a difficult time with my epidural when I was in labor with Tessa, I did not like the sound of a lumbar puncture. She did say that she would call us 24-48 hours after the MRI was taken. She said no news was good news, and if we hadn't heard from her by day 3, we should call. I got a call later that week saying I had an appointment for an MRI on Monday, January 27th.
As luck would have it, we had a cold/snow day on that Monday. So, I didn't need to take off work again. My mom went with me so that Broch didn't have to miss work, and Tessa went to daycare as usual. When we got to the clinic we were told they were running about an hour behind. I was able to get my blood tests done while we were waiting. I was so nervous! I went to the bathroom 5 times before they called my name to go back. Once they called me back, they said it would take about 1 1/2 hours to get all the pictures. I was NOT excited about that. I was prescribed a sedative to help with the anxiety of the MRI, but it didn't really help. Because they were taking pictures of my eyes and brain (my insurance didn't approve the MRI of the blood vessels), I had to have this mask thing over my face. It was kind of like a catchers mask, but only on the lower half of my face. I was able to listen to music, but the noise of the machine kept giving me headaches. I was getting really anxious. After about 50 minutes they pulled me out. I was so excited! I thought I would be able to sit up and calm myself down, but I was wrong. I had to stay lying down so the pictures lined up. They only pulled me out to put in an IV of contrast so that they could take about 30 minutes more of pictures. I was almost in tears by the time it was done. My anxiety level was so high!
I didn't hear back from Dr. Keung by Thursday, so I put a call into her office. She called me back shortly after. She said the good news was that there were no tumors anywhere. However, both of my optic nerves were curved probably from the pressure of my brain producing too much spinal cord fluid. This was also probably what was causing my headaches. Typically the next step would be a lumbar puncture as a final piece of evidence to back up the diagnosis of PTC, but the MRI showed that the gap between the bottom of my brain and my spinal cord is smaller than usual because my brain is tipped back. It's just the way God made me, I guess. Anyway, a lumbar puncture may make the brain tip even more making that space even smaller. So, she didn't want to take the risk. She did put be on 250 mg of Diamox twice a day. So, far I am experiencing a lot of side effects - numbness in my feet (sporadic), numb lips (sporadic), feeling of weakness and being tired, metallic taste in my mouth when drinking anything carbonated, and diarrhea. I am hoping these go away as my body adjusts to the medication. I've only been on it since Thursday, so only time will tell. :)
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