Spondylolisthesis Story #13: Yana (Spondyloptosis)

Yana - Spondylolisthesis Story (Congenital Spondyloptosis) 

I first started to feel back pain when I was 9 years old while raking the driveway with my family. The back pain started to increase when I did physical activity and during the same period of time I started to have major night sweats. My mom was afraid that I had back cancer so we went to Doernbecher's Children's Hospital. The doctor there took an x-ray and didn't see anything wrong (I wasn't surprised, those x-rays were the worst quality). He told my mom that I was probably lying so I could have an excuse to sit on my butt and watch tv. Well either way, he was way off because we lived on 5 acres surrounded in forest, a field, and river. Plus, my dad was the only one could reach the tv and he rarely turned it on for us (And who would want to laze around the house when they had that much land to explore with siblings and cousins? Crazy doctor). I started to hate PE because my hamstrings started to shorten/tighten up. I couldnt reach past my toes anymore. One of the exercise we did was on the floor where we'd stretch our legs and back. There was a long line on the floor and a short line perpendicular to it, we would sit down with the bottoms of our feet lined up to the short line, then with our the back of our legs flat on the floor, we would stretch forward and see how far we could go. Because of my ever tightening hamstrings, I couldnt go far anymore. My teacher thought I was just being lazy. So he had two other students hold down my knees while he pushed my back forward to make me stretch further. He did it slowly, and even when i asked him to stop because my legs hurt, he kept going until I almost started crying. He still thought I was being lazy, so everytime we had this exercise he would have two kids come up and hold my knees down while he pushed me forward.

Anyways, much to my mom's dismay, I pushed through the pain and tromped and stomped my way around the woods (because who wants to be a kid stuck inside while everyone else was raising a ruckus having the time of their lives right outside?). When I was about 12 yrs old, the pain got so bad that I had to sit on a thick pillow that I brought to class. Even then, the relief only lasted for about 30 minutes before I started squirming again. I also started to get a slight boney bump protruding from my lower back. My mom decided to take me to another doctor to get an x-ray, MRI, and CT Scan done. When the doctor examined me, she saw that one hip was 1.5 inches higher than the other, but she couldnt understand why (The scans showed I had Scoliosis, but she didn’t think so bad to contribute to the higher/lower hip). So my mom put a sponge in the shoe of the leg that was shorter so that my hips would be aligned. My aunt near Seattle then suggested that I go to a Chiropractor that lived close to her. It took about 8-10 visits to him until I started to feel the pain alleviate. So I started going once every week (But I live 3 hours away from him and the gas was getting to be a problem). So it was decided that I would live with my aunt until the Chiropractor said it'd be fine to see him only once a month. It was a horrible 2 months (No offense to my aunt). The school I went to was terrible. It was around the time that Harry Potter came out. It didn't take long for people to start calling me "Potter" (I had short hair and roundish glasses - how original of them). The Chiropractor took his own x-ray and he diagnosed me with Grade 5 Spondylolisthesis (I compared what little I could find on the internet to the x-ray and noticed that my spine slipped a little past grade 5 and was already traveling down). Therefore, I actually had a complete slip, which is called Spondyloptosis. 

Fast forward until I was about 21 years old. The pain I felt was starting to be regular to me. Specifically lower back pain, and nerve pain in my right calf (rarely in my left). It only happened every couple days or so, and/or if I did any lifting. For a whole year, when I was 17, I had NO PAIN. It was seriously a miracle. I went to a Russian guy that my aunt heard about in Kansas, and for an hour he massaged my lower back and legs. He prayed with my dad and aunt over me, and I guess that did the trick. Then, when I was about 19 years old, I had another year without pain. I remember laying in bed, just overwhelmed with pain and worried about my future of continuous back pain. So I just started to pray like crazy. It felt like hours just laying there and praying. And as I was praying, I suddenly started to feel this strange popping in my back. The popping was light and soft, like bubbles (It's hard to explain). The next morning (when I usually have trouble getting out of bed and have to roll out of bed and land on the floor) I jumped out! I ran out to my mom and started running around (I think I freaked her out a little bit ha-ha). Then I did something that I dreamt about for years and years: I leaned over and touched my toes. My sisters and brother probably thought I went crazy because they walked in to see me bending over, touching my toes, and crying. That was the best year of my life. I was able to play long games of volleyball, I ran around our field 3 times a day, and I finally started to feel that everything was going to be alright.

Well, eventually the pain returned, much to my dismay. But it wasn’t as bad as it used to be. Then, one day in June, during my cousin’s graduation party last year (I was 21), the pain got a little bit worse. I was playing a short game of volleyball (a Russian staple ha-ha) with my cousins, and all of a sudden I couldn’t stand up anymore. I pretended that I sprained my ankle and rolled off to the side of the field. After a few minutes of laying there I felt better and stood up. But I didn’t want to fall down again, so I went to the picnic table and sat there pretending that I was bored with the game. From that point on the pain started to increase quite a bit. Rather than the pain just being in my lower back and right calf, it was now all the way from my right hip to my big toe, as well as from my left calf to my left big toe. The pain I used to have, used to be just this dull annoyance (like I constant bruise that I felt, or maybe it became like that when I became used to the pain). But now it's like someone is taking a handful of needles and just stabbing my legs/toes constantly.  

My mom couldn’t take it anymore and took me to a doctor at Kaiser Permanente. He took an MRI and a couple of x-rays. I saw that the slip had progressed even more since the last time I saw it. I even noticed a little bony shelf that had grown to hold the slipping vertebrae from progressing further. My doctor told me that surgery wasn’t necessary unless the pain increased even more, but if I wanted one then he could start getting an operation ready. So I went home with a troubled mind of whether I should get the surgery or not. Then one day, I had this one major attack that suddenly overtook me and I fell to ground. All I could see was black and white spots, and I was just writhing on the ground (imagine a bug that you spray with poison, thank goodness I was at home). That pain was so unbearable I seriously thought I was going to die ... Or at least become paralyzed. So I went straight back to the doctor and told him I wanted surgery. He told me okay. But he didn’t know how to do the surgery and had never heard of Spondyloptosis before, so he was going to have a colleague come up from California whom has done surgery for this type of thing A COUPLE OF TIMES (Vertebrectomy). I was like, heck no, I am going to do research and I’ll get back to you. I really didn’t want to have a Vertebrectomy because I have always been insecure about how my body looked. I seriously look like a box with limbs since my ribs are resting on my hips. By some kind of miracle I have always been a little slim, even though I rarely do any exercise and constantly eat my precious junk food. And with the Vertebrectomy they would just remove the overhanging vertebrae and slide my spine over and fuse it there.

So I did a little bit of research and found a doctor in Baltimore, MD., named Dr. Charles Edwards, II. His father started experimenting with a surgery in the 80’s I think, and he and Dr. Charles II have been improving it ever since. Their type of surgery is an 8 hour one where they slowly move the spine upward into its original position. I talked with Dr. Charles II and he said the success rate is very high. So I sent him all of my x-rays/MRIs/CT Scans and asked him if it was possible to do surgery for me. He said of course. So I cancelled my surgery with my KP doctor. When I made the call to cancel, he asked me who the other doctor was and I said Dr. Charles Edwards II in Maryland. He replied with “Oh him. Yes I’ve heard of Dr. Edwards II. Bye Yana.” I was irked! He heard of this experienced doctor and didn’t tell me about him?!

Anyways, since Dr. Edwards II isn’t with Kaiser Permanente (my mom works at their hospital so we have their insurance), I had to send a request to KP to approve and cover my surgery with Dr. Edwards II. They said no, but I could send an appeal. So that is what I did and I should be getting an answer in the next couple of days. My fingers are tightly crossed!!!

- Yana