Spondylolisthesis Story #14: Mindy

Mindy - Spondylolisthesis Story (Spondyloptosis) 

When I was 15 years old, I started having pain in my knees and my back.  At the time, I was playing volleyball and I thought that it was just normal aches and pains and I needed to "toughen up".  Towards the end of that volleyball season, I was performing worse and worse and I remember a couple times the coach pulling me out of the game - and I practically limped back to my seat.  I was more concerned about by knees at the time, they were popping and crunching like an elderly person's knees - not the knees of a 15 year old.  So, with my my mom's insistence, we finally went to a Orthopedic Surgeon to find out what was going on. 

I had x-rays taken of both my knees and my back. When I went back for the results, in one horrific day, I found out that my knee caps were out of place (born with it) and I had a grade IV spondylolisthesis at the L4-L5 level (most likely due to "stress fracture"). I was, of course, absolutely devastated. The Orthopedics' specialty was knees and he was very "surgery-happy." He said I needed to get the knees taken care of right away. In hindsight, this was such a bad idea ... but my back pain wasn't too severe yet and he really scared both my parents and I into getting the surgery.

I had the surgery done on one knee; a surgery called a "Lateral Release." It's a pretty serious surgery because they actually cut the tendons to try to put the knee cap into place. I was on crutches for 3 months and had to do multiple sessions of physical therapy. The crutches were extremely bad for my Spondylolisthesis, and I started getting more and more pain in my back. After the crutches, we started looking at what could be done for my Spondy. I got passed between several Orthopedics because nobody really wanted to deal with a case so severe. I tried other options instead: pain medicine, bracing and chiropractor. The pain medicine and bracing did nothing. The chiropractor was extremely positive that he could move the bone back into place. During that time I had traction and manipulation. I would walk into the chiropractor's office, but many times, when they were done, I couldn't walk out. I was so cramped up that they had to put me in a wheelchair to get me out of the office. I believe during this time I went from grade IV to complete slippage (although the doctors and MRI specialists had different opinions on what grade I actually was). They kept telling us that I just needed more sessions. I also had a cortisone injection, but it did not do anything for the pain. Finally I said enough was enough, and I decided to have surgery.

I was referred to an Orthopedic Surgeon at Iowa City and we booked in a date for surgery. By that time I was in so much pain (the sciatica down my left leg was absolutely excruciating) I had to quit school and try to study at home. I was very depressed, but I think because I was young I didn't really understand the severity of the situation. I lost a considerable amount of weight; got down to around 110lbs. I was angry, paranoid, and thinking suicidal thoughts. I just wanted it to be over, and I was relieved when the time finally came for the surgery.

The surgery I had was a spinal fusion using the bone from my hip (Autograft) and putting it in my back to fuse. The Orthopedic's reason for this approach was because I was still young and could still grow, so he didn't want to use any hardware. I was on the table for surgery almost 6 hours, face down. When I finally woke up from the anesthesia I couldn't open my eyes because my entire face was so swollen. The nurse brought in my parents to see me and I heard them say, "That's not our daughter." They couldn't even recognize me! I was in the hospital, I believe, for around 5 days. I don't remember what pain-killers they had given me, but they made me extremely sick. I threw up repeatedly and I broke out in a rash on my chest. Instead of weaning me off the pain medicine, they just stopped it. Because of this major surgery, my period had also started. Iowa City is a teaching hospital, so whenever the doctor came in, about ten students would also follow. It was so humiliating to be talked about in front of all these people! But, the worst part was when I had to get the body cast. They placed me, naked, on a metal bed frame in which the slots can be removed. My period was going crazy so I was bleeding all over the floor while they casted me for about an hour from below my chest to my knees. They cut holes for my stomach and for my privates. I chose the colour purple for my cast. I have to say, now I detest the colour purple! :P

I had to have the body cast on for 4 months. About a week into being at home, I cracked the hip of the cast. Instead of re-casting, they just put more casting over it, so I had one big lump on one side (which made it extremely hard to roll up onto that side). During this time I still tried to do my homework and keep up with my schooling. A few teachers would occasionally come over and help me, and my Spanish class even came to visit me one time. A couple times a week my dad would slide me out of the bed onto a reclining wheelchair so that he could wash my hair, and I could get on the computer or be wheeled outside for some fresh air. By the 4th month I was going absolutely stir-crazy (as you can imagine). There was a calendar next to my bed marking down the days.  

Finally the day came to get the cast off! At first they wanted to keep the top part of the cast to act as brace, so they removed only the bottom part. But, it was so loose from me loosing so much muscle, in the end they had to cut the whole thing off. The entire process took a very long time because it was so big, and the saw kept heating up so much. They then put me in a plastic brace and put me on a tilt table that slowly tilts until I was upright and not getting dizzy. I was given a walker and that was it. The doctors told me that there wasn't any physical therapist that could help, and that I would just need to learn to walk again on my own. My legs had atrophied so much, but I still wanted to try walking right away! I remember that as soon as we got home I wanted to go to the bathroom by myself. I had been standing up for about a minute when I got very dizzy and my dad caught me just in time before I hit the floor. I had to take it easy from then on, but slowly returned to moving about normally without the walker.  

I did some water therapy in warm water at a rehabilitation center to try to get some of my muscle back. The pain wasn't completely gone, but I thought it was just still healing. But, it was actually getting worse, and then one day I started have sciatica down my leg again. I was devastated all over again. I couldn't believe I had gone through all that hell and it still wasn't fixed! We went back to the doctor and they said they couldn't tell from the x-rays or mris if it was fused or not. It was so frustrating, but I wasn't ready for another surgery, so I left it.

It has been around 16 years since the surgery now and I've had my good and bad times. I wouldn't say that I have chronic pain as much, so I am still thankful that I had the surgery, but I do wish that the surgery had been done differently, specifically with hardware for a better chance of a successful fusion. I moved to Australia about 7 years ago, and during the time here I have had some bad pain. I went to an Orthopedic Surgeon and he said that nobody here would attempt doing a 2nd surgery on me because the risk of paralysis is too high.  He sent me to a pain specialist and I had a cortisone injection and it actually worked that time. For now, I just cope day to day ... Trying to balance being semi-active without causing pain. I don't always get the balance right, but I'm okay, and just thankful to be alive and to be able to walk! 

- Mindy