“We don’t really know what it is, but we’re going to do further testing on it.” Since July, it feels as if I hear those words whenever I step into a doctor’s office. Unexplainable headaches. Pressure in my head. A knot on my knee.
Back in June, I had the scariest migraine of my life. I couldn’t think right, my head was throbbing, my vision became impaired in my right eye, and I had problems speaking. I scheduled an appointment with the neurologist and was diagnosed with chronic headaches. I was prescribed Toprimate (generic for Topamax) and was told to come back the following month. While taking Toprimate, soda tasted disgusting, I had constant headaches and sweats, I felt out-of-sight/out-of-mind, and I wanted to always be in bed. It was miserable.
A week later (July 24), I went to the ophthalmologist since my eyes were last checked when I was nine. He told me to go get my mom and have her listen in on what he found. Little to my knowledge, we would become experts on neurological conditions. I was ordered not to Google anything and to come back two days later for testing. I was also scheduled to have an MRI the following week. The ophthalmologist said I would be fine, but he wanted to make sure it was nothing severe.
The following Tuesday night (July 30), the ophthalmologist said I had a condition called pseudotumor. It is extremely rare and is found in 1 in 100,000 women during childbearing years. After the MRI, I was scheduled to have a spinal tap August 2.
For one who has a high tolerance for pain, let me be real: it hurts. Bad. The nurses held my hand, and I was put on a strict six-hour bed rest. I should be having another one, and I will beg for pain medication. You feel pressure and are lucky to have them hit you on the first try. When the radiologist measured my fluid pressure (which felt like forever), he said it was at 37. To give an idea, one passes out at 40, and the normal level is 15. One nurse remarked that it was the highest she had ever seen. Though in pain, the entire medical staff was beyond great. I was informed when I would feel pressure, and one nurse constantly held my hand and said to squeeze when I felt pain. I’m sure her hand was purple at times.
After the procedure, I thought my level would be normal and that I would be free from pain for a few months. Wrong. That Sunday, I had a migraine, keeping me in bed for five hours. Advil no longer worked for pain – only Goody’s Powders (a gift from God, I tell you).
The headaches and pressure remained constant as it became time for me to head back to Ruston to finish my last leg of graduate school. I was taking Diamox to help with the fluid pressure, but I had to be weaned off because it was giving me stroke symptoms. Additionally, I noticed a change in my vision. What used to be clear objects suddenly had a ghostly appearance. I recognized this at church. With a planned weekend at home rapidly approaching, I called the ophthalmologist in New Orleans. Within 20 minutes, I was sitting in his friend’s office. By the conclusion, I was blessed – I only needed glasses. The glasses eventually rid me of most headaches.
What I haven’t mentioned is weight’s “effect” on this condition. Doctors swear that if you lose as little as 5%, pseudotumor will leave. I lost that 5%, and I saw squat. Both ophthalmologists and my neurologist said they saw little change, but it wasn’t any better or any worse. I have kept the weight off, but I put little hope into it.
In addition to pseudotumor, I have battled hypothyroidism since I was 15. The prior year, my weight surged, and my mom was concerned. I was sent to an endocrinologist and have been on Synthroid since. While I was taking care of doctor’s appointments, she recommended that I get tested for poly-cystic ovarian syndrome. She said it is commonly linked with pseudotumor.
I am thankful to be going to a neuro-opthalmologist Friday (yes, on Black Friday). I am intrigued as to what she will say and will want to do. Both ophthalmologists I have seen advised that I need to have another spinal tap; however, the neurologist has not shown haste in having one done. Furthermore, I am seeking a second medical opinion because my current neurologist is does not specialize in pseudotumor, and my ophthalmologist who detected it suggested I do so. My current neurologist suggested I have a shunt placed if lasiks fail. I’m 24, and if possible, I do not want to undergo brain surgery. I decided to blog about this to let others know that they are not alone.
You may be thinking, "what about the spot on your knee?" Well, I went to a surgeon and had it removed. After going back yesterday for a checkup, he said nothing is official, but he believes it's a benign tumor of the sweat gland. Skin pathologists are currently looking at it. I know I should probably be bummed out and to my wits end, but I seriously laughed the entire drive home as I blasted Tegan and Sara's new CD Heartthrob (seriously the bomb diggity).
I wish it were easier to find a cure for pseudotumor. I wish that I (as well as thousands of other women) did not have to endure pressure, pain, and endless failed "treatments" (abstaining from my favorite vegetables that are high in vitamin A has been quite difficult). I imagine a day where the doctor will tell me that it is no longer there and that I don’t have (insert new medical thing here), but I know that for now, it’s just a dream.
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