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 

Spondylolisthesis Story #1: Brenna (Spondyloptosis/Grade 5 & Grade 1))

Brenna (Cat) - Spondylolisthesis Story (Spondyloptosis/Grade 5 & Grade 1)

My story begins in 1990/1991. I was about 9 or so when I began experiencing a lot of pain and other nagging symptoms in my low back and lower extremities. I complained of pain numerous times, and my parents brought me to several doctors over the next few years, including a Chiropractor. After enduring this pain for several years, I had to stop playing all of my beloved sports; the pain was just too much to bare. My primary care doctor told both my parents and myself that nothing was wrong ... She proceeded to advise my parents that I was exaggerating my pain in attempts to seek attention, get out of playing sports, and simply being lazy. She said that all I needed to do was stretch and remain active (encouraging me to become even more active in fact). She never once diagnosed me, referred me, nor suggested there was a problem of any magnitude. After a few of these appointments, I stopped complaining of the pain, and truly thought that everyone felt the way I did. Boy was I wrong! 

A few years later (1996), my back pain had become excruciating. I began to have weakness, numbness, and shooting pains in my legs, and I would occasionally fall down as well. The pain was so great that it literally caused my skin to turn a grayish-green shade. My "new" skin colouring did not go away until after I had my surgeries. After spending several years in silence about my tremendous pain and discomfort, what ultimately drove me to tell my parents (and then doctors), once more that my back did not feel normal, was discovering a large "lump" on my low back. The lump turned out to be my S1 protruding due to my slip. In fact, due to the degree & severity of the slip (3 inches beyond a grade 5), my body had become very compressed. Not only had a stopped gaining height, but I soon began to lose about an inch in height prior to surgery. At that point in time you could actually see the bottom of my ribcage touching and rubbing against the top of my hips. I saw a number of specialists within a short period of time who diagnosed me with Spondylopstosis; which is considered a complete slip after Spondylolisthesis Grade 5. I was 14 at the time, and within 6 months I was on my way to a new life without pain ... but not before enduring some very extensive and traumatic surgeries, full body traction, and a long & challenging recovery. 

In the 6 months prior to my surgeries my mom found a practice called Soma Body Work. The therapy itself actually began to help moving the spine in the correct direction. This fact amazed the doctors to no end. I have continued with this Integration Body Work Massage Therapy ever since (I have been getting these treatments for nearly 16 years now). It's one of the main things which helps to relieve my pain to this day as well as assisting with my nerve-related issues. I often wonder what surgeries and general nerve damage I could have avoided had we found and started this body work 2 or 3 years earlier. But, unfortunately, one cannot go back in time. 

In 1997, after much consideration, my parents decided to go with a series of surgeries and full body traction; which was the best option to avoid nerve damage, or worse, paralysis. There were several options presented by different surgeons around the country, but slowly reducing the slip over a longer period of time seemed to be the best bet, and I really believe that it was. My first surgery was a Laminectomy. I was then put in body traction, which consisted of a halo cast on my head and two rods through my knees. Each contraption had ropes attached that led to the respective ends of the bed. Weights were added each day to those ropes, which slowly stretched my spine, literally. This was the most painful part of the entire experience; something I will never forget. I was supposed to be in traction for a total of 2 weeks, but on the 7th day I began to lose feeling and movement in my feet, so after much insistence by my family the surgeon stopped the process and moved on to the 2nd surgery. Because the traction had to be stopped early, my slip had only been decreased to a grade 5. This was good in several regards, as it allowed the surgeon to be able to fuse the spine and avoid further nerve damage in my legs and feet. The second surgery was an Anterior Fusion. They went through my abdomen to reach the front of my spine and fused with two screws, a femur bone (donated cadaver bone), and bone graft, which was harvested from my right hip. Unlike most fusions, both an Allograft and Autograft were utilized in the fusion in order to increase the overall stability and solidity of the fusion mass region. I woke up after this surgery with a body cast on, and a lot of pain in my hip, but not so much in my back or stomach, interestingly enough. At the time the doctors had failed to mention that bone graft would be cut from the hip. My family thought that I was really out of it when I continually complained of my hip pain. My mom kept saying, "No honey, you had back surgeries. You did not have hip surgery!" LOL.

I spent just over 4 months in my body cast, followed by a year in a body brace. I do have permanent nerve damage in my feet unfortunately, but in the grand scheme of things, this side effect is minor. Over time my body learned how to compensate to function with my foot drop and other related issues. I was very fortunate to not experience any serious bladder or bowel complications or involvement. In that specific department, the most problematic issue has been related to the extensive scar tissue surrounding my lower organs, including that of my intestines/bowels. Breaking up the scar tissue through massage has been helpful to some degree, although no matter what I do, I have since had issues with digestive matters unfortunately. I did not have any additional problems involving my back for the first 8 years after my surgeries. 
In 2006, I experienced increasing pain and nerve problems, which were determined to be the result of Deterioration/Degeneration and Early Onset Osteoarthritis above the fusion region, mainly at the L4, L3 & L2. This was to be expected, just not as soon as it presented. These issues may be connected to my auto immune diseases - PsA & AS - which I began witnessing in late 2006/early 2007. And, most recently, in my search to find answers to my auto immune related symptoms, a new slip in my neck at the C6/7 was discovered during a MRI to rule out MS. While I do not have MS - which is beyond awesome - it was a shock to get the news of yet another Spondylolisthesis slip. I do feel very fortunate to have had this slip diagnosed much earlier in the progression, as it's currently estimated to be a grade 1/2. 


So, that's my story in the smallest nutshell I am capable of! LOL. :)


If you would like to read more about my story, please check out my Spondylolisthesis blog: Spondylolisthesis. And, if you would like to hear more extensive information and details regarding my recovery period, surgeries and the traction itself, please feel free to contact me at Healthandillness@gmail.com. 


- Brenna 


My Pre & Post Op X-Rays from 1997:

Brenna Pre-Op X-Ray Spondyloptosis

Brenna Post-Op X-Ray Grade 5 Fused