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 

Spondylolisthesis Story #9: Justin & Natalie (Grade 4)

• Justin & Natalie - Spondylolisthesis Story (Grade 4)

  
  

  My son Justin was diagnosed with grade 4 Degenerative Spondylolisthesis. He is 11 years old. L5 slipped forward 98%. He had his first surgery in Sept 2011. Their plan was to pull the L5 back as far as they could without causing any nerve damage. I believe they were able to pull it back 75%. They then wanted to place a cage in-between L4 & L5 to replace the deteriorated disc. When they did that the nerves completely shut down. So they made the decision to take it back out. They nerves responded, but very weak. They tried to build it up with bone fragments. They placed a rod and some screws in to ultimately fuse L4, L5 and S1, and anchored it to his pelvis. It ended up being a 9 1/2 hour surgery. Pure torture! He looked absolutely horrible when he came out of surgery and was on a ventilator for almost a week.

  
  

  Due to complications Justin was in the hospital for 2 and 1/2 weeks then rehab for another 2 1/2. He had extreme burning pain in his legs. He had major nerve pain that slowed down his recovery process. They released him from rehab still in tremendous pain and barely walking, but they said they have done all they can now the nerves would just have to heal. He was getting the shooting nerve pain starting at the bottom of his foot. Mostly his left foot. And his right foot was weak and numb. They had him on Neurontin, Prednosone, Oxycontin and Oxycodone. We went back for our followup after rehab, and the CT scan is showing the screws are shifting and the disc that they tried to build up is now pushing against his nerves. But thankfully, after they gave him the back brace, higher dose of Neurontin and some steroids, the burning stopped. Started getting stronger and walking on his own by late Nov. early Dec., and in our visit in Dec. the x-rays did not show any change in the shifting. So we thought we were good and on our way to recovery.

  
  

  So my son is 4 months post op, thought it was getting better ... now PT is saying that he is regressing instead of progressing, and his legs have been giving out every once in a while. It's not an everyday thing, but they are concerned. Next step: Neurologists. :(

  
  

  He's 11! Way to young for all of this!! It's taken a toll on all of us!! The doctors at HSS have been great! Whenever I need them they answer within minutes! Take him same day! Very supportive. Just wish they could figure out what's going on quicker. Heading back tomorrow for EMG. Hope Justin will be able to handle it and get some kind of answers!!

  
  

  My son is only 4 months out and not 100 percent fused yet, so I am not sure if removing all the hardware would be a good idea?! But they have mentioned removing the 2 top screws because of the shifting that has occurred and what they believe to be causing his legs to give out. His doctor's are based at The Hospital for Special Surgery in NYC. At this point we are waiting for neurological testing to determine his weakness and regression. He still goes to PT 3x a week, but like I said, over the past 2 weeks they are saying he is regressing. So I guess we wait and see what neuro says ...

  
  

  We have already been to the surgeon. They are the ones recommending the neuro tests. He does have the foot drop, which was getting better, but for some reason has become weaker again. They are unsure if what's causing the legs giving out is muscular or the nerves. Yes this is all very frustrating!! Mostly started the first time his legs gave out, but they did x-rays and everything looked to be ok. Just said hardware was jarred which is causing the pain. This time his legs gave out, but thankfully, he didn't get hurt. He still has pain on a daily basis but it's not anything how it was or that he can't handle. Also stopped the Neurontin 3 weeks ago, so not sure if that has an effect on things. Hopefully the test results will give us more info.

  
  

  I was thinking the same with the Neurontin, but the surgeon does not seem to think so. Yes, there was some shifting of the top 2 screws back in November and they have been monitoring it. There has not been anymore shifting since even with the jarring. Their guess is that it could be possible for a certain movement from the shifting. They did talk about corrective surgery as well but they want to see the test results first. Find out Monday when we will go to see neurologist. Knew this was going to be a long recovery but thought we were coming to the end.

  
  

  EMG did not show anything they didn't know already. So they have now requested a cat scan. Legs have been giving out more often.

  
  

  Can't catch a break!! Cat scan didn't look good. L5 and S1 fused, but L4 is dangling. 2 screws are coming out, and there is no bone mass there. Certain movements push against his nerves which causes his leg to give out. So they want to go in and do corrective surgery on March 9th. Not sure what needs to be done until they get in there. They have 3 options. Trying to fix L4 alone if possible, but they may need to anchor to L3 as well. Another thing they may want to try is to put the cage in again, but this time go in from the side and through the muscle to avoid the nerves.

  
  

  Justin had his 2nd Surgery March 9th. A walk in the park compared to the first surgery. Only 6 days in the hospital this time, thank God. The moment they went in the top 2 screws in L4 just fell out. So the are pretty sure that was causing all the problems. It was a 6 hour surgery. They took bone graph from the hip to build up around L4, and put 2 new screws into L4. When they were going in, they tore the dural liner, so they had to repair that so he had to lie flat for 24 hours to be sure the tear heals. The side effects he has had from that were headaches and fever. From the surgery itself he had very little uncontrollable pain. He said the numbness in his right foot seemed to be a little better but it is still there, and from this surgery, he has numbness in his left leg as well. The Dr. say it should go away with time.

  
  

  So we are a month out of surgery and Justin is doing pretty good. Still has numbness in his left leg and right foot. He has also had some shocking pain in his back that has come and gone. He is still pretty weak. He had aqua therapy first time the other day and he couldn't get out of the pool. They needed two guys to go in there and get him. I am hoping all these little thing will go away, and when we go back on the 16th they tell us we are on our way to full recovery. Fingers crossed!!

  
  

  - Natalie & Justin (Justin is Natalie's Son. He is the Spondylolisthesis patient.)