Wednesday, January 2, 2013

The Scare, Detailed

One of the major hiccups that delayed me in getting back to blogging has been the health crisis I mentioned in my last entry. It was such a traumatic, scary experience, and it was so all-consuming for so long, I felt like I needed to write about what happened before I could write about anything else. Although I’m feeling much more secure now than I was immediately following the scare, it’s still an important part of my story and will certainly impact my wellness moving forward—so it deserves to be told.

In August or September of last year, I scheduled an appointment with an optometrist. I had been getting a lot of migraines and figured that I probably needed new prescription lenses… and anyway, I was really ready for a new pair of glasses! The day of my original appointment, the optometrist’s secretary called me to reschedule because the doctor was out ill for the day. I rescheduled out another month, but wound up calling back a couple weeks later to see if I could be seen sooner via a different doctor.

I would have been fine with waiting, but my eyes had started to do strange things. Suddenly, I was seeing floaters—lots of them. I was having flashes of light so bright that I could see nothing but whiteness. My eyes couldn’t seem to focus on certain things, like the computer monitor at work. Worse, my headaches were getting significantly more severe.

The eye exam started off normally. I had all of the standard tests done with a nurse, then had the opportunity to browse the frames before I met with the optometrist himself. As soon as he started peering into my eyes, however, I knew that there was something wrong. I remember my palms sweating, and I remember saying something about how my eyes must have gotten so much worse… especially my right eye. As he placed the dilating drops in my eyes, he said that my prescription had scarcely changed, and that interestingly enough, my right eye was the stronger of the two.

Sitting in the waiting room for 15 minutes while my eyes dilated was torture. As the drops took over, my vision became so blurred that I could hardly see. I was anxious to begin with, but worrying about going blind and musing over the doctor’s puzzling comments made me downright panic. Finally, the doctor called me back into his office. The rest is a blur—he told me that my right optic nerve was significantly swollen, which indicates pressure from behind. A tumor? A blood clot? I had to go to the Emergency Room immediately to get an MRI done.

I remember calling my mom in tears, and her coming to pick me up from the clinic to drive me to the ER. I remember the endless waiting and finally being called for the MRI, dreading it all the way because the last one I had (elbow, nerve tumor, 2009) had been miserable. This one wasn’t as bad; the nurses were wonderful. Despite all of the worry, testing, and waiting, results from this night of hell were inconclusive. No tumor and no blood clot meant that I wasn’t in immediate danger of dying, so they sent me home with directions to follow up with a neuro-optometrist the next morning.

The initial appointment with the neuro-optometrist was another joy. I was badly shaken, exhausted from the night before, and terrified of what I would learn. I was there for over 5 hours, taking tests, having pictures taken of my eyes and optic nerves, trying to read wall charts and failing miserably. The neuro-optometrist was polite but professional and fairly short (in words and stature). She found both optic nerves to be swollen, although the right was much worse than the left. I had lost a significant amount of vision in my right eye, which she said may be temporary or permanent.

Her diagnosis was intracranial hypertension, made worse by my age, weight, and prescription Lithium. (Let me tell you, there's nothing so shaming as the "You-should-really-lose-weight-but-I'm-being-nice-about-it" speech, delivered by an ultra-skinny doc!) Anyway, she made a referral for me to have a lumbar puncture (“spinal tap”) within the next 1-2 weeks.

I didn’t understand what was happening, what was wrong with me, or what to expect. I was miserable, knowing that there was TOO MUCH PRESSURE ON MY BRAIN OMG! but none of the doctors seemed too concerned. In fact, the clinic lost my referral, so I was to wait a full 2 weeks for the procedure. Meanwhile, my headaches continued raging, I lost all sight in my right eye for several terrifying moments TWICE, and I lived with the knowledge and fear that my brain was under some serious stress.

The weekend following my initial ER visit was horrible. I spent all weekend in bed, trying to escape the headache that pounded incessantly in my ears. Finally, my mom talked me into calling urgent care to see if they could give me anything for my headache, and after reviewing my case and noting my worsening symptoms, I was referred (again!) to the ER so that the lumbar puncture could be done on an emergency basis.

The spinal tap itself was torturous. Although I was given a local anesthetic, I felt every jab of the needle, felt it inside my spine, felt the grinding in my teeth. Because I’m overweight, it was harder for them to get a successful draw (again
the gently-phrased but still hurtful to my sensitive soulcomments from the doctors... "Sorry, it's more challenging when it's harder to make out the individual discs...") When they were finally able to get the needle in place, they were amazed. The spinal fluid released with such force that it literally started spraying out into the collection tube—they had never seen that before.

It might have been because I was shivering and crying and trying not to vomit, but the draw itself seemed to take forever. The fluid kept coming and coming, and the doctors had to use a second and then third collection tube because so much fluid was trapped within. Once I was bandaged, drugged (aaah), and receiving IV fluids, the doctors put the severity of the situation into perspective for me…

A normal, healthy lumbar pressure is around 10-15, although certain factors (such as age, weight, etc.) may influence an individual’s pressure. My lumbar pressure clocked in at 45. 45! I vaguely remember feeling proud of myself, like this was an accomplishment of sorts. The doctors then told me that, at that level of hypertension, my brain should have been hemorrhaging. I should have had a stroke. I could have had permanent brain damage, or worse—the condition could have been fatal.

The aftermath has been a challenge, also. For the first several days following the puncture, my lower back and hips hurt so badly that I could hardly get out of bed to pee. When I did start trying to move around, the Diamox I had started taking to keep the fluid level down made me feel faint. It was a low point for me—especially because I had been yanked from the comfort of my Lithium and plunged into a depressive episode.

Recovery continued (and continues) to be an ongoing process. By now, most of the major issues—mood, memory loss, cognition problems, soreness—seem to be resolved. I had my first follow-up with the neuro-optometrist in November, and although my optic nerves are still swollen (she reports that this may take “months” to go down), the vision in my right eye is already improved.

I have my next follow-up on Monday, and I’m hoping (and expecting!) improvements. Surgery and other invasive therapies may be necessary depending on how well my body has been able to heal on its own, and at this point, I’m just rolling with what comes. I’ll do whatever is necessary to stay healthy. After a brush with my own mortality, every day feels like a blessing.

★ jenna

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