Now I’m Living the Purple Ribbon Life


I had a quick recovery from the surgery, and since everything was clear, I started feeling restless. We had been planning to move to Asheville, NC, and by summer, I was getting pretty desperate to get out of small town South Carolina. I want and need a place that makes me feel centered and capable of conquering things, and the mountains do a beautiful job of helping me access my soul.

I worked for eighteen months in a residential treatment center for adolescent females. The owner was more than willing to hire me in a wheelchair, which completely surprised me, However, I was on the night shift, which I was used to working on several previous jobs. I knew that my opportunity to advance in that position was limited, because the girls needed support workers who were mobile and could effectively perform the physical requirements of the job. I did the best I could with some very good co-workers, but after eighteen months in the job, I started feeling as if my body was struggling in small ways. I felt that I could no longer be committed to a job, because i never knew what my body was going to do or feel like from day to day. I resigned in July of 2014. I knew I would miss working, but things did get out of control health-wise.

It took several months for things to come to a head. It started out with what I thought was a sinus infection. After putting it off for a few weeks, I finally went to the doctor. He prescribed me some antibiotics, thinking I’d get better soon. After I finished that round, the headaches and dizziness and falling I had been feeling continued, several times a day. Somewhere about that time my vision became blurred. One day I was fine wearing my glasses. The next day I couldn’t see much of anything. I resorted to reading glasses because I couldn’t live without reading. I soon needed an even stronger pair of reading glasses. I could not figure out why. Yes, it could be a natural part of again, but it happened so suddenly, I doubted it.

I had been told a couple of years ago that I had Chiari malformation. I didn’t know what it was when the neurologist told me, but he seemed quite concerned with something else going on that actually was never followed up on. I talked to some people on Facebook who told me that my symptoms matched some of theirs, and they had Chiari. I knew there was a Chiari specialist/neurosurgeon less than an hour away, and a friend suggested that I talk to someone who had surgery with the neurosurgeon at whom I was looking.

My mind was made up, and I called his office to make an appointment. I had to wait several months with ever-increasing headaches, dizziness and falls, and not much control of my bowel and bladder, but finally in June 2015, I was in his office.

I presented him with my symptoms, and he did a thorough neurological exam. After this appointment, he wanted me to have several MRI’s done and something called a tilt table test. The tilt table test is very weird. They buckle you to the table and elevate you at an angle. The goal is to diagnose dysautonomia, a condition of the autonomic system not working the way it is supposed to, and syncope (fainting).

When I had the appointment to go over my MRI’s and testing results, I was a bit floored. Yes, I had Chiari 2–it comes along with my particular form of spina bifida. I had degenerative disc disease, something I think I had known but had been previously overlooked. I had tethered cord, which is another gift from the spina bifida. The hydrocephalus I had no trouble with from the age of 8 might be causing trouble again. He said that I would possibly have to have a new shunt put in. But the main problem, as he saw it, was cervical spondylosis. That means that my spinal cord was being compressed. Two other really weird findings were that my spinal cord had grown too far on both ends, and parts of a few bones were missing.

He advised cervical laminectomy for three of my vertebrae. This means he removed the lamina, the back side of the spinal canal that forms a roof over that part of the spinal canal. He suggested laminoplasty as well. I agreed and had surgery little more than a week later.

Surgery was done July 22, 2015. I was in a great deal of pain at first, and used my patient controlled pump a little more than I expected. They gave me about 24 hours and weaned me off the pump and on to the oral pills.

I went home two days later. I had home health care come in and do physical therapy and give me showers. That was one of the most uncomfortable things I’ve ever experienced. I am generally very independent about most things, and I couldn’t wrap my head around the fact that I needed help in such a personal way right then. It’s hard when you’re used to caregiving, to let someone give you care. That period lasted three weeks.

I’m not 100% yet–my vision is really messed up–but it helped me immensely.

I may have to have other surgeries later. The more likely one is that perhaps my right foot, which is deformed, might be somehow fixed so that when I walk, I don’t walk on the side of that foot. I still might have to have a shunt put in. Tethered cord surgery seems to be a long shot, and I’ll continue to pray that it stays that way.

One nice thing about the Chiari community is that I found lots of people in Facebook groups that knew how I felt, could answer my questions, and reassure me about what was “normal” or something to be concerned about. I didn’t go through that alone, and they didn’t abandon me when I had my cervical surgery. I am still a Chiarian, and I’m glad to know what that means,

I feel more disabled after this physical experience than I ever did before. The only thing that had a greater effect on me was the depression I’ve been living with for over 20 years.


About lana1967

I'm a Southern girl at heart who wants to build a community of people who believe they can change the world with words like "love" and "freedom" when they become more than words, but actions in our work and our daily lives.
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