A Long Journey
On April 22nd of 1987, my life changed forever, not that I was aware of it at the time. I had just celebrated my first birthday six days earlier and I was a happy, healthy baby girl. I had learned how to walk at the age of 8 months and by my first birthday, I was known to take off running around the house so I could slide a great distance across the kitchen floor.
That morning hadn’t started off any differently than any other. I had played all morning, then was put down for a nap on the couch. Mom had just left for about an hour, so I was being cared for by a close friend of Mom’s. Then I woke up from my nap and everything changed. Mom came in and witnessed my legs twitching. When she went to pick me up she realized that I was burning up with a high fever and gave me some Tylenol. Soon afterwards, she tried to set me down to go get me a wet washcloth, but as soon as she tried, I fell straight back and hit my head. Stranger yet was I didn’t cry or react to the fall. This alarmed my mom and she tried setting me down while holding me only to realize my legs were like noodles. They wouldn’t support me. Needless to say, she rushed me to the local clinic. While I was not technically paralyzed yet, I was well on my way. My legs had little to no sensation and I could not move them on my own. By the next morning, I was paralyzed from the waist down and was rushed to the Children’s Hospital in Omaha by my poor mom. Upon admittance to the Children’s Hospital, I underwent a lot of tests. Although Mom cannot remember them all, she does recall one MRI and at least six spinal taps. Fortunately, I have no memory of this time in my life but my mom remembers it all like it was yesterday.
Throughout my week in the hospital, my mother was never allowed to stay with me at night, and during the day the doctors would throw possibilities around like perhaps my mom let me eat lead paint chips or perhaps my mom was throwing me into walls. Obviously, these brainstorms didn’t lead anywhere and I was sent home with a 50/50 chance of walking again, but no answers. No physical therapy with a professional, no steroids, no medication of any sort was prescribed for me. My mom was left with no answers as to what happened to me or what my future would hold. As she watched her happy, outgoing little girl become more and more depressed, she fought back. She believed that I would walk again and therefore pushed me to try. She did her own sort of physical therapy with me and was on the constant look out for any movement whatsoever in my legs.
Three weeks after I was released from the hospital I was in my high chair, waiting on breakfast very impatiently. I very rudely yelled at my mom and as she looked at me to tell me “just a second,” I yelled “Now” and kicked one of my legs forward. She was completely shocked and amazed. She told me to get mad at her again. So, I yelled “Now” again and kicked both legs forward but not with as much force as the first time. She turned this ‘getting mad’ into a game and I kept trying until I was worn out and couldn’t anymore. From there on she pushed me to really start moving my legs and learn to walk again. She would put stuff out of my reach a little ways and have me work on trying to crawl. To some this may seem cruel but without her pushing me and being my own personal cheerleader, I don’t know where I’d be today. It was a long year as I learned to crawl, stand on my own again and eventually, walk. I walk, unassisted, but I walk with a severe limp. It has been referred to as a rolling gait. My balance isn’t the greatest and I have numerous other typical problems, but I walk. I know that I am lucky and I owe that to my mom.
From here on I have only visited doctors when necessary. For a small amount of time around the age of seven I went to a Shriner’s Hospital in Wichita, KS. They put plastic braces on my feet in the hope of making me walk flat footed. It didn’t work, but they were great for going “ice skating” on the kitchen floor. I really hated these torture devices. Then they performed a surgery on both of my legs to lengthen my ligaments and muscles. This did help quite a bit in my growth and reducing the amount of spasms I had on a regular basis. After the surgery I no longer regularly visited these doctors. I would see family doctors for various other problems that are related to TM, but since I didn’t know I had TM at the time, they kept telling me that one thing had nothing to do with the other.
Around the age of 15, I started noticing that I couldn’t run anymore. Every time I would try, my ankles would painfully pop and give out, causing me to fall. I also could no longer skip or jump without risking the same results. My ankles where giving out a lot at school when coming down the steps and switching classes was starting to become a lot like playing a game of Russian roulette, never knowing if I was going to go down the steps much quicker than I intended. I went to a family doctor in town who referred me to a neurologist in Lincoln, who pushed me into agreeing to have a baclofen pump implanted, under the notion that it would help me walk normally and help me regain the ability to run. Baclofen is a muscle relaxer that helps with spasticity and the pump uses the intrathecal (directly into the spinal fluid) method of delivering the medicine. As I recovered I did notice that I had a lot less spasms, but this was the only benefit I ever noticed. Over the next four years, the nurse practitioners took care of me (the neurologist had left the practice); my dosage was increased with each visit, but to no avail. Finally, after four years with no actual doctor managing the pump, I was sent to a neurologist in Omaha who took an x-ray for the first time. He discovered that the catheter was broken and estimated that this had happened about six months after it had been implanted. I had not even been getting the benefit of the medication. It was all going into some fatty tissue in my side and back. I was beyond angry and frustrated. I had it removed completely. After this experience, I avoided doctors like they had the plague and had a very negative opinion of neurologists in general. For years I managed to deal with my problems on my own. I still had questions but I had given up on any hope of ever getting answers.
It wasn’t until a few years later that I was having a lot more problems and was actually willing to see another neurologist that I found the answer that I had always been searching for. I visited my family doctor (the same one that had seen me the day I got sick) and discussed the issues that I was dealing with and asked for a referral to see another neurologist. As he was listening to me, he was taking a look at my medical records and found my actual diagnosis. As crazy as that sounds, that is exactly how I found out 25 years later what I had. It had been deep in my medical records the whole time. He told me that I had transverse myelitis. I had never heard of it before but he had acted like this diagnosis was no big deal and I should not be so upset that this information had been available all these years and that no one had told me.
I was still pretty upset but I was even more interested in seeing a neurologist than before. In the hopes that he could tell me more about TM and give me some answers as to how to manage it, I was sent to another neurologist in Lincoln. Unfortunately, he was by far the worst one I had been to see yet. He not only disregarded me the second he walked into my examining room, but furthermore insulted me by checking me to see if I had ever been paralyzed to begin with. This really painful test involved big needles and electricity. After confirming what I already knew, he basically said that it was all in my mind and I should see an orthopedic specialist, further confirming my bad opinion of neurologists.
I am still on a journey to find a doctor that can help me because I know that I cannot manage everything I am dealing with on my own anymore. But I am also taking matters into my own hands and learning about transverse myelitis and connecting with other people who have it. It has been a long 26 years but I know that the answers to my questions are out there and I will keep searching for them. I have a lot more hope now that I finally have an answer as to what changed my whole life all those years ago.
~ Nicole Goeschel, Nebraska SRNA Support Group Leader
