The Road So Far...
[mood| 
content]
[music| Through the Fire and the Flames - Dragon Force]
Last year, I turned 25 years old. I was in school and living my life like any other 25 year old should.
In March of 2015, I finally went to a doctor for rapid weight gain, heavy menstrual cycles, and severe menstrual cramps. I was diagnosed with polycystic ovarian syndrome (PCOS). PCOS is a syndrome where a woman's ovaries have multiple cysts on them. It basically renders the woman practically infertile. It's not impossible to have children, but it makes it highly improbable that it will happen.
Fast forward to mid-July of 2015. I was studying for a very important test that my future career would depend on. I started to feel a pressure headache, so I stopped studying and went to bed, thinking that it would be fine the next day. I had gotten pressure headaches before, and with a good night's sleep, they resolved themselves. But when I woke the next day, the headache was worse.
Upon speaking to my mother, we concluded that it might be a sinus headache. So I spent the day inhaling the steam of boiled water that had stuff boiling in it from lemon rinds, to garlic, to vinegar, to rosebuds. Any home remedy for getting rid of sinus headaches was tried. I went to bed that night with the same headache and woke up again with it.
So, despite the fact that I absolutely abhor taking pills, I tried extra strength Tylenol. With no relief. Sinus headache medicine, no relief. Excedrin, and no relief. i tried to go to sleep that night, but by 2am, I gave up. The pain was so debilitating that I had to have my mother drive me to the ED (emergency department). Which is not a place my family goes to lightly. We have to be dying or in severe pain; which I was.
At the ED, I was hooked up to an EKG and given Dilaudid. The meds got rid of the pain, but it still felt like my brain was swelling and my skull was too small. I was discharged a few hours later and given prescription meds for painkillers. My mother suggested that my issue might be structural, due to the fact that when I turned to look at my EKG and turned back, the pain came back -- and this was after I was dosed with Dilaudid.
So at 10am that same day, she drove me to a chiropractor to get adjusted and see if that would help. This time, the adjustment got rid of the feeling of swelling, but not the pain. It was also discovered that I had lost curvature in my C-spine.
This went on for a while. I went back to the chiropractor for weekly adjustments and was also seeing my general practitioner. My GP ordered CT scans and MRIs with and without contrast on my brain and on my neck. Every test was coming back normal. The only symptoms were that I was in immense pain and my blood pressure was directly reflecting that. All the while, I was losing more and more sleep for not being able to lie down without pain or even concentrate on a sentence without pain. I was given pain med after pain med and nothing worked.
Eventually, my eyesight started to blur, and then show doubles of everything. Every doctor I met was treating me as if this were just a migraine, but I was coming up on three weeks of constant pain that was only getting worse. Eventually, I couldn't see anything at all -- just shadows. My right eye had also started to track inward, which I had never been able to do before on my own. My GP felt that they had exhausted all avenues and referred me out to a neurologist.
My mom was able to drive me there on Monday, August 17th. Initially, they said they wouldn't be able to see me until Friday, the 21st. But the receptionist realized there had been a cancellation and squeezed us in that Monday. After a short exam, the neurologist ordered me to the nearest hospital for a spinal tap.
When you receive a spinal tap, they take the opening pressure in an open gauge. The gauge ranges from 0 to 20; a normal opening pressure is 4 to 5. I had never had a spinal tap before, so I was scared. I knew that I shouldn’t move because I had a needle directly in my spinal cord. One wrong move and I could have paralyzed myself. I felt the needle go into my back, right in between my shoulder blades, and I felt warm liquid splatter on my back and on the sheet under me. I heard the doctor tell his assistant that he had “never seen anything like this” in the 21 years he had been doing it. His assistant just kept patting my hip and telling me that I would feel so much better when they were done. I was lying there wondering if my spinal fluid was green or something and that’s why the doctors were so astonished.
Now, I had received a cocktail of Morphine, Tramadol, and Benadryl when I was admitted to the ED for my spinal tap. That took the edge off the pain, but it didn’t take it away completely. Halfway through my spinal tap, the pain started to diminish. I don’t really remember the MRV they ordered to ensure I didn’t have vessel problems in my brain, and I don’t remember being put in my patient room after everything was all said and done. I was supposed to lie flat for 4 hours after my spinal tap, and I don’t remember most of those four hours. I could have fallen asleep, but I’m not sure. I remember seeing an ophthalmologist that night, though. It was late - around 9pm - and he came into my room and performed an exam on me. My vision was a bit better than it was before, but not stellar. Everything was still extremely dark and I couldn’t make out faces, just outlines. The ophthalmologist told me my vision was at 200/300. And left me for the night, where I stayed at the hospital to ensure I didn’t get an infection or have adverse reactions to my spinal tap. The next morning, I was told by my doctor that the reason why my doctors at the spinal tap were so surprised because my spinal fluid was under so much pressure that when they opened the needle, I shot out of the tube like a water gun. There was so much that they couldn’t even estimate my opening pressure. I didn’t much care at that point because the pain was completely and totally gone. I was released from that hospital that Tuesday afternoon.
Wednesday morning, my mom got a phone call from the ophthalmologist asking if we could come in that morning, as soon as possible. We packed up and drove down to his office so he could give me a work-up. I had them shine lights in my eyes, and they had me try to read charts, and they gave me a visual field test…none of which I could see.
A visual field test is a dome-shaped…thing. You rest your chin on a ledge and they cover one of your eyes. You’re supposed to stare at a yellow light and click a button every time you see a flash of light out of your peripheral vision. You’re not supposed to look around for the flashes of light.
I took this test and couldn’t even see the yellow light they told me to stare at. I even cheated and looked around for the flashing lights, but I couldn’t see them either. I get done with all the tests and the doctor comes in to talk to my mom and I. He tells us that when he was called to see me Monday night at the hospital, he was actually off shift. He had just finished and was supposed to meet up with his wife, but when he saw my chart, he knew he had to see me. My chart was too bizarre to him - a 25 year old female presenting with a headache that wasn’t responding to traditional pain meds, bilateral blindness, and a spinal tap where the doctors drained 15CCs for tests and an additional 60CCs to alleviate pressure. He also got on his phone right in front of us on a conference call with a neurosurgeon, a neurologist, and another ophthalmologist. They discussed my case and the results of the tests I had just taken that day. When he got off the phone, he looked at my mom and me and told us, “I want you to head straight to M-(name of city) right now. Don’t stop for lunch. There will be doctors waiting for you at B- P-(hospital).”
So, off my mom and I went. We called family, letting them know what was going on and it took us two hours to get down to M-. My sister, fortunately, was on the same coast as we were for a school she had orientation at, and she said she was going to rent a car with her now ex-husband and drive down to meet us. They were going to meet us in about ten hours. So mom and I get to B-P-and we were essentially escorted through the ED there, since they knew we were coming. I met another ophthalmologist there. This ophthalmologist told me I would probably be that blind for the rest of my life, and then sent me over to J-M-(another hospital) for shunt surgery. And we went.
Mom and I waited in the J-M-ED for almost 13 hours. We were starving, because we left our house for the first ophthalmologist at 10 that morning and hadn’t stopped to eat since. Mom didn’t want to leave me alone, either. Her attitude was that if I didn’t eat, she wasn’t going to either. After about ten hours waiting around in the ED, a bunch of Fellows came by and dosed me with Ativan before giving me a local anesthetic and inserting a lumbar drain.
A lumbar drain is like a catheter. It’s a tube that’s inserted in the lumbar spine where the spinal fluid is. Spinal fluid drains through the tube and into a bag where the nurses and doctors can keep track of how much is being drained. The orders for the nurses were to drain 5CCs out every hour. I was on my lumbar drain for Wednesday night and all of Thursday, until my surgery on Friday, August 21. My sister, brother-in-law, dad, and step-mom all came down to stay with me through all this. The risks of VP (ventriculoperitoneal) shunt surgery are that I could have woken up a vegetable, or without the ability to see, or without the ability to speak.
A VP shunt is a device that diverts fluid off my brain and optic nerve and dumps the fluid into my abdomen. The surgery was obviously a success. And my vision has improved to 20/25, though I am still peripherally blind. I also still get headaches on a daily basis, and so far can only take acetaminophen for them. There are a lot of meds I can’t take anymore because they increase your intracranial pressure.
But I’m dealing. Because that’s what people like me do.
So that’s the back story so far. Now you all know essentially what happened between then and now. And there will be more stories to come. :)
- The Admiral
content]
[music| Through the Fire and the Flames - Dragon Force]
Last year, I turned 25 years old. I was in school and living my life like any other 25 year old should.
In March of 2015, I finally went to a doctor for rapid weight gain, heavy menstrual cycles, and severe menstrual cramps. I was diagnosed with polycystic ovarian syndrome (PCOS). PCOS is a syndrome where a woman's ovaries have multiple cysts on them. It basically renders the woman practically infertile. It's not impossible to have children, but it makes it highly improbable that it will happen.
Fast forward to mid-July of 2015. I was studying for a very important test that my future career would depend on. I started to feel a pressure headache, so I stopped studying and went to bed, thinking that it would be fine the next day. I had gotten pressure headaches before, and with a good night's sleep, they resolved themselves. But when I woke the next day, the headache was worse.
Upon speaking to my mother, we concluded that it might be a sinus headache. So I spent the day inhaling the steam of boiled water that had stuff boiling in it from lemon rinds, to garlic, to vinegar, to rosebuds. Any home remedy for getting rid of sinus headaches was tried. I went to bed that night with the same headache and woke up again with it.
So, despite the fact that I absolutely abhor taking pills, I tried extra strength Tylenol. With no relief. Sinus headache medicine, no relief. Excedrin, and no relief. i tried to go to sleep that night, but by 2am, I gave up. The pain was so debilitating that I had to have my mother drive me to the ED (emergency department). Which is not a place my family goes to lightly. We have to be dying or in severe pain; which I was.
At the ED, I was hooked up to an EKG and given Dilaudid. The meds got rid of the pain, but it still felt like my brain was swelling and my skull was too small. I was discharged a few hours later and given prescription meds for painkillers. My mother suggested that my issue might be structural, due to the fact that when I turned to look at my EKG and turned back, the pain came back -- and this was after I was dosed with Dilaudid.
So at 10am that same day, she drove me to a chiropractor to get adjusted and see if that would help. This time, the adjustment got rid of the feeling of swelling, but not the pain. It was also discovered that I had lost curvature in my C-spine.
This went on for a while. I went back to the chiropractor for weekly adjustments and was also seeing my general practitioner. My GP ordered CT scans and MRIs with and without contrast on my brain and on my neck. Every test was coming back normal. The only symptoms were that I was in immense pain and my blood pressure was directly reflecting that. All the while, I was losing more and more sleep for not being able to lie down without pain or even concentrate on a sentence without pain. I was given pain med after pain med and nothing worked.
Eventually, my eyesight started to blur, and then show doubles of everything. Every doctor I met was treating me as if this were just a migraine, but I was coming up on three weeks of constant pain that was only getting worse. Eventually, I couldn't see anything at all -- just shadows. My right eye had also started to track inward, which I had never been able to do before on my own. My GP felt that they had exhausted all avenues and referred me out to a neurologist.
My mom was able to drive me there on Monday, August 17th. Initially, they said they wouldn't be able to see me until Friday, the 21st. But the receptionist realized there had been a cancellation and squeezed us in that Monday. After a short exam, the neurologist ordered me to the nearest hospital for a spinal tap.
When you receive a spinal tap, they take the opening pressure in an open gauge. The gauge ranges from 0 to 20; a normal opening pressure is 4 to 5. I had never had a spinal tap before, so I was scared. I knew that I shouldn’t move because I had a needle directly in my spinal cord. One wrong move and I could have paralyzed myself. I felt the needle go into my back, right in between my shoulder blades, and I felt warm liquid splatter on my back and on the sheet under me. I heard the doctor tell his assistant that he had “never seen anything like this” in the 21 years he had been doing it. His assistant just kept patting my hip and telling me that I would feel so much better when they were done. I was lying there wondering if my spinal fluid was green or something and that’s why the doctors were so astonished.
Now, I had received a cocktail of Morphine, Tramadol, and Benadryl when I was admitted to the ED for my spinal tap. That took the edge off the pain, but it didn’t take it away completely. Halfway through my spinal tap, the pain started to diminish. I don’t really remember the MRV they ordered to ensure I didn’t have vessel problems in my brain, and I don’t remember being put in my patient room after everything was all said and done. I was supposed to lie flat for 4 hours after my spinal tap, and I don’t remember most of those four hours. I could have fallen asleep, but I’m not sure. I remember seeing an ophthalmologist that night, though. It was late - around 9pm - and he came into my room and performed an exam on me. My vision was a bit better than it was before, but not stellar. Everything was still extremely dark and I couldn’t make out faces, just outlines. The ophthalmologist told me my vision was at 200/300. And left me for the night, where I stayed at the hospital to ensure I didn’t get an infection or have adverse reactions to my spinal tap. The next morning, I was told by my doctor that the reason why my doctors at the spinal tap were so surprised because my spinal fluid was under so much pressure that when they opened the needle, I shot out of the tube like a water gun. There was so much that they couldn’t even estimate my opening pressure. I didn’t much care at that point because the pain was completely and totally gone. I was released from that hospital that Tuesday afternoon.
Wednesday morning, my mom got a phone call from the ophthalmologist asking if we could come in that morning, as soon as possible. We packed up and drove down to his office so he could give me a work-up. I had them shine lights in my eyes, and they had me try to read charts, and they gave me a visual field test…none of which I could see.
A visual field test is a dome-shaped…thing. You rest your chin on a ledge and they cover one of your eyes. You’re supposed to stare at a yellow light and click a button every time you see a flash of light out of your peripheral vision. You’re not supposed to look around for the flashes of light.
I took this test and couldn’t even see the yellow light they told me to stare at. I even cheated and looked around for the flashing lights, but I couldn’t see them either. I get done with all the tests and the doctor comes in to talk to my mom and I. He tells us that when he was called to see me Monday night at the hospital, he was actually off shift. He had just finished and was supposed to meet up with his wife, but when he saw my chart, he knew he had to see me. My chart was too bizarre to him - a 25 year old female presenting with a headache that wasn’t responding to traditional pain meds, bilateral blindness, and a spinal tap where the doctors drained 15CCs for tests and an additional 60CCs to alleviate pressure. He also got on his phone right in front of us on a conference call with a neurosurgeon, a neurologist, and another ophthalmologist. They discussed my case and the results of the tests I had just taken that day. When he got off the phone, he looked at my mom and me and told us, “I want you to head straight to M-(name of city) right now. Don’t stop for lunch. There will be doctors waiting for you at B- P-(hospital).”
So, off my mom and I went. We called family, letting them know what was going on and it took us two hours to get down to M-. My sister, fortunately, was on the same coast as we were for a school she had orientation at, and she said she was going to rent a car with her now ex-husband and drive down to meet us. They were going to meet us in about ten hours. So mom and I get to B-P-and we were essentially escorted through the ED there, since they knew we were coming. I met another ophthalmologist there. This ophthalmologist told me I would probably be that blind for the rest of my life, and then sent me over to J-M-(another hospital) for shunt surgery. And we went.
Mom and I waited in the J-M-ED for almost 13 hours. We were starving, because we left our house for the first ophthalmologist at 10 that morning and hadn’t stopped to eat since. Mom didn’t want to leave me alone, either. Her attitude was that if I didn’t eat, she wasn’t going to either. After about ten hours waiting around in the ED, a bunch of Fellows came by and dosed me with Ativan before giving me a local anesthetic and inserting a lumbar drain.
A lumbar drain is like a catheter. It’s a tube that’s inserted in the lumbar spine where the spinal fluid is. Spinal fluid drains through the tube and into a bag where the nurses and doctors can keep track of how much is being drained. The orders for the nurses were to drain 5CCs out every hour. I was on my lumbar drain for Wednesday night and all of Thursday, until my surgery on Friday, August 21. My sister, brother-in-law, dad, and step-mom all came down to stay with me through all this. The risks of VP (ventriculoperitoneal) shunt surgery are that I could have woken up a vegetable, or without the ability to see, or without the ability to speak.
A VP shunt is a device that diverts fluid off my brain and optic nerve and dumps the fluid into my abdomen. The surgery was obviously a success. And my vision has improved to 20/25, though I am still peripherally blind. I also still get headaches on a daily basis, and so far can only take acetaminophen for them. There are a lot of meds I can’t take anymore because they increase your intracranial pressure.
But I’m dealing. Because that’s what people like me do.
So that’s the back story so far. Now you all know essentially what happened between then and now. And there will be more stories to come. :)
- The Admiral