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 #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 #12: Glory Anna (Grade 3)

Glory Anna - Spondylolisthesis Story (Grade 3)

My story begins at a very young age. In fact, as far back as I can remember. When I was young if I did anything strenuous, the next day I would be suffering pretty badly. My sister and I would sometimes ride horses ... the next morning I would feel like I was hit my a semi-truck. 

I believe I complained about it hurting to my parents, and I'm sure to my siblings. But back a ways in time we didn't know what we know now and that children could even have such back issues. So it's not that my parents didn't listen, more that they thought I was just being a little whiney child ;). 

Through my teenage years I pretty much lived like a normal teen. Although I was in pain all the time, but it was bearable. I was able to do a lot, and now that I look back on it, I was probably was way too hard on my back.  When I was 17 years old I was in a very bad car accident. The car flipped numerous times, and I was thrown from the car. I didn't notice too much difference after it surprisingly. A fact which is pretty stunning! But, I am sure that it had some kind of negative effect on my back, as it was a horribly bad accident and I had to be medevaced to the hospital.

The years went on living in the same pain, but I kept living my life as if I didn't have any kind of condition. I met my very handsome husband when I was 18. We dated for 4 months then got married. A year later (when I was 19), had our first son, Ethan. Labor was tough but I opted for no meds, but ended up with 2mg of Stadol. It (as you can imagine) was very bad back labor. Afterward, what hurt most, of course, was my back! After a while, it got a little better and I kept on keeping on. 

When our son was about 1 1/2 we found out we were pregnant with out daughter Haley. 

I was very excited, but knew my back would be hurting that much more for the next 2 years.

And, sure enough, it did! In fact, towards the end of my pregnancy, I literally had to crawl to move about. We were living in a town where we knew NO ONE and I had a 1 1/2 year old to take care of, and let me tell you, that was one of the most difficult times of my life!

During this time I was fed up with the doctor's telling me that, “Most people in the world have a backache, here is a flyer of exercise’s you can do." So, I persisted. I told my doctor at the time, “No, I need an x-ray, and if you won't give me one I will go elsewhere to get one." And I got one alright! The doctor called me THAT SAME DAY and told me: ”I’m so sorry I didn't believe you. You have a serious back problem and you need to come in right away so we can talk about it." I just cried and cried, not because of my problems, but because someone finally listened! I knew all along there was something seriously wrong, and that I wasn't just complaining or exaggerating for no good reason. 

From there I got an MRI. At this point in time I was about twenty-two. The films showed that I had Grade 2-3 Spondylolisthesis, as well as nerve damage, bone spurs, and a few other issues. It has been a very tough road. Now, at this point, I was at least happy to know what was going on. And, even though it wasn’t good news, it was news. I had validation and some answers to my ongoing pain and related symptoms. 

From that point forward I have seen a number of doctors in my search to find the right one for me. I hope to find one who actually listens and will help me, not just give me pain meds to mask the pain. Although, I have to take some pain medication to control my chronic pain in order to be able to live my day-to-day life!

I am so happy I found the Spondyo support group! I have never felt so welcomed before! Also, I get a lot of answers from all the members! SO THANK YOU! I will be writing a Spondyo & Pregnant story VERY SOON! So all who are still in the baby making years should check out the page! It is amazing and VERY HELPFUL! Again, thank you to all of you for listening and helping as much as you do! 

- Glory

Spondylolisthesis Story #11: Libierth (Grade 1)

Libierth (Libby) - Spondylolisthesis Story (Grade 1)

I started feeling back pain on January 2007. I was about to start my first semester at Fresno State University when all of the sudden I was unable to walk straight. I had to be very careful with the way I was walking; I noticed that if I walked leaning towards one side, that the pain was more bearable. That lasted for a couple days and then it was gone. I thought it was over; but no! It came back month after month, after that. At first I associated it with my menstrual cycle. As time passed, the pain became more common. By this time, I was noticing that the pain would only come if I was standing for a long period of time in one position without moving. By November 2009, I was getting my back pain more frequently.

On April 2010, I decided that it was time to see a doctor. I didn’t know who to see, so I picked up an Internist. He sent me for x-rays. The interpretation was not clear at all, and they originally thought I had a herniated disk. He sent me to physical therapy for a month three times a week; a place I didn’t like at all. On my second visit, I asked them to cancel all my appointments because I was going to get a second opinion.

I went to Tijuana, Mexico. Again, I consult an Internist. She sent me for x-rays and CT Scan. I had those done and got the result on the same day she saw me. She saw my results, told me I had Scoliosis and that my spine seemed a little abnormal. She referred me to a colleague - an Orthopedic Specialist - who I saw that same day. The Orthopedist told me I had grade I Isthmic Spondylolisthesis, located at L5-S1. He sent me for physical therapy for a month, just like the previous doctor did. But, this time I picked the place, and I was very happy with it. They taught me the importance of making my core muscles strong. Since then, after knowing what I have, and that there was actually something wrong with me, I’ve been more aware of how long I stand up, how I walk, lift things up, etc. I am not in as much pain as I used to be because now I know my body and I learned how to avoid it.

My big concern now is becoming pregnant. I’m afraid the pregnancy will cause a further slippage.


- Libby

Spondylolisthesis Story #10: Nikki

Nikki - Spondylolisthesis Story 

Here is my story so far ... 

I am 21 year old female, small build weight.

In late September/Early October 2011 (a month before my 21st birthday), I bent down to pick something up when I was tidying … as I bent I got a bit of a niggling pain in my back. I thought “Aw, what is that?!” I just rested after until the pain went. I had never had any back pain before so just thought I had pulled it when bending.

A couple of weeks later I was walking quite quickly down the road for an appointment. And, as it felt as though I had taken a too big of a step, that’s when my right side of my pelvis/groin felt like it had just twisted around. It really hurt! I couldn’t just stopped walking so carried on. Within a day or so it then led to Sciatica in my right leg. It was just through the bum area. When I told my Dad he explained how he also suffered from it for years. He said if he twists or bends and traps something, that will cause it. He said it takes a few months sometimes for it to completely calm down.

After a couple of weeks of shuffling my legs because of the pain, I went to the doctors. She confirmed I had Sciatica, and gave me Diclofenac & Co-Codamol. After taking these, they didn’t do much of a difference at all, so a colleague recommended an Osteopath. 

After my consultation with my Osteopath (where we delved into my medical history), I realized that I've actually endured a few traumas to my spine. One being when I was about eleven years old. I fell off of a book shelf and hit my spine (in the lumbar area), but when I went to hospital they said it was just bruised, as nothing showed on the x-rays. After that, I thought that it was psychological that I felt the need to bend forwards when I was standing up for too long, and the fact I could no longer do cartwheels because I couldn’t keep my spine straight. She said that it felt like a fracture to my spine, but not a normal type of fracture, something known as Spondylolisthesis (a slipping vertebra), a tilted pelvis, and something wrong with the Sacroiliac Joint.

She did some work on it and it felt tons better. Straight away I was no longer shuffling my feet and my Sciatic pain had died down a heck of a lot. A couple of days later I was sitting on my sofa, as I got up and turned I had a massive click and fell to the floor in pain unable to move! A paramedic came out and got an on-call doctor to come to me ASAP to prescribe some stronger painkillers.

I went to the Osteo the next day and she said that everything she has adjusted before has been undone in that one turn.

Anyway, a few months of treatment and she recommended that I get an x-ray because she was worried something is still slipping. My Sciatica has gone from one leg to both. I have had a lot of muscle pain and pins & needles/burning in my lower limbs.

So I went to my General Practitioner who straight away felt the step in my spine. She referred me for an x-ray and she provisionally diagnosed me with Spondylolisthesis. I told my Dad, who told me that my Nan has Spondylosis, and her Dad had spine issues as well.

I had my x-ray and got the results after 1 ½ weeks! Nothing shown – no further action. GUTTED!

So I went back to my GP and said well, I have been told the x-ray should have been done with me both standing and maybe bending forwards, in order to show it better. I also said it should have been from an oblique angle. The doctor said she didn’t want to give me another x-ray, but will refer me to a consultant. I was happy with that!

While waiting for an appointment I saw a Chiropodist. He who told me I have "flexible flatfoot," so I got some shoe soles to help with them. My legs were in a lot of pain afterwards, but I guess that’s from building up the muscles that haven’t been working due to the rolling in feet.

I then saw the Consultant Orthopaedic Surgeon. He did the usual examination and was worried that it may too be slipping, and that I may have something pinching the Sciatic Nerve as well. He referred me for an MRI. Hurrah, I may get some answers!

In the meantime, I spoke to a doctor and told them I have been in pain when I go out and don’t know what to do, they said that I need to sit down as soon as it hurts. I explained that this can be very difficult because: 1. What if there are no seats? 2. What if the seats are hard with no back support (which hurts a lot!)? 3. What if it’s raining?! and 4. How do I get home from there if I am in too much pain to walk?! They then realized my concerns and suggested a wheelchair for when it starts to hurt. Which is what I have now done – and it has helped! I am now eating better because of it and still going out – not as much as before, but its' better than nothing!

So … when I had my MRI the lady put a wedge under my knees and my legs rolled outwards when she did it, but she didn’t move them straight, so I thought this was okay. I then got my results last week and they have said I have Lumbar Scoliosis and a herniated disk between the L5 and S1 vertebras. I, of course, was SO shocked by this! This has never ever been mentioned; not even the Orthopedic Surgeon Consultant noticed any type of Scoliosis. They have advised pain management!

So I went to my Osteo very frustrated and confused. She could not believe it was Scoliosis or a herniated disk. She got a colleague, who is also a trained Osteopath, to have a look. She felt the step in my spine and looked at my spine and said it’s perfectly straight, it’s just that step. She then did an examination, and there was no pain where there really should have been if I had a herniated disk or something. She tested things on my back asking when it hurts, etc. They both said it completely points to Spondylolisthesis.

She did a lot of massaging on my right hamstring, which has been very tight lately, and did the usual maintenance (on my pelvis, Sciatic Nerve and Psoas). She advised that I get a second opinion, because if I accept treatment for Scoliosis it would not be the right one for me, especially if they inject my disk with steroids when its not needed! She said it may have looked like Scoliosis on the MRI because of the unstable vertebra, or because of the way I laid (I laid straight on my x-ray and nothing showed on that?!).

Then I was at the London Marathon for my work on Sunday, and we have these fabulous Physiotherapists. I asked if they could quickly rub down my left calf, as it was VERY tight (I felt bad as I wasn’t a runner but they didn’t mind!). She explained how it was in a mess. There was a lot of tightness and some inflammation, which prevented her from getting all of the spots of muscle problems (I think they were in spasms or something of some sort). I explained everything that I am going through at the moment and she said she definitely thinks there is more going on. She said it sounds like Spondylolisthesis and can’t believe they have diagnosed Scoliosis.

I have also been advised by a few people to look up Fibromyalgia, as it hurts to scratch or poke my skin in most places! So perhaps it could be a combination?

Basically, for the past 7 months I have suffered with chronic pain that all started when I bent down to pick something up. It has led to a lot of muscles problems and Sciatica. Also, like I said, it has also meant that I have had to hire a wheelchair, which is causing me a lot of mental issues – which yes, may be depression, but it’s because of the pain and lack of answers!!

I also work full time, so that it causing me a lot of problems which I am unsure that I can cope with for much longer. It's a lot with all the back & forth to the doctors, etc., in my search for answers/diagnosis, so that at the very least I can do some correct exercises that will benefit me!

I recently called my Osteopath, who is going to write a letter (hopefully by my doctor’s appointment on Saturday morning) to suggest a second diagnosis.

This is obviously a difficult time for me, as well as for my Husband. It has caused a great deal of upset.

Work is very difficult and I am in a very difficult situation. I almost feel like I don’t ever want to come back in, as I just want to give up trying to fight the pain and feeling like I’m not a concern.

Oh, and I also have an appointment with an Orthodontist to look at getting a mouth guard, as I have a lower bite and cross bite. I’m hoping this will help with my jaw alignment, and ultimately help with my body alignment (like the shoe insoles!).

I think I have covered everything!

Any help is greatly appreciated!!! 

- Nikki

Spondylolisthesis Story #8: Kristin (Multiple Slips)

Kristin - Spondylolisthesis Story (Multiple Slips)

For as long as I can remember I've had back and neck pain. When I was little my mom worked at a rehabilitation center and from time to time during the summer I would go to work with her and help do filing, or run little errands so that she could get her major work finished. One day, one of the therapists came to me and massaged my shoulder for a little and commented that my shoulder was, "too tight for being so young."  I was probably eight or so at the time. That was the first time I can really remember noticing it (the pain & symptoms associated with the Spondylolisthesis).

A couple of years later, when I was playing softball, I woke up with virtually no range of motion in my neck. Needless to say I went and played in my game that day. I loved softball, so nothing was going to keep me from playing.

In school I had been teased for the way I walked to the point where I went to the doctor. He told me I had flat feet, was going through a growth spurt, and told me to wear different shoes. In the meantime, I'm hearing it from my family about my poor posture. I kept telling them it hurt too much to stand up straight. Naturally that fell upon deaf ears. It was "growing pains."

A few years ago, after I moved to Tennessee, I had lifted something I shouldn't have at work, and felt a "pop" in my spine right between the shoulders. It's something that bothers me to this day.

Come last year, my back was so unbearable that I finally decided to go get it checked out. There were seven vertebral slippages: Two cervical, three thoracic, and two lumbar. My doctor also found that my L3, L4, and L5 are missing the transverse processes (what he called a "genetic malformation"), and there is no disc between the L5 and S1. The lower lumbar are also fused to my pelvis on the left side; later diagnosed as Ankylosing Spondylitis. I don't have the grade of slippage because, to be honest, I was getting hit with all this all at once, and along with everything else going on, I didn't get all the information. Also from that meeting with my doctor, he told me that if I planned on having children I could put myself in some danger. The pressure on the pelvis could cause I possible fracture. GREAT.

I'm not getting treatment for any of this for a few reasons. Right now I don't have insurance, and don't qualify for the lax Medicaid in Tennessee. After seeing my dad suffer with cancer and having to get bi-weekly infusions, I have reservations.

I don't know what the future holds right now; I only know what's going on in the present. And in the present, I'm having a lot of pain. I have days when my back feels like it's on fire. My spine is tender to the touch in certain places, and from time to time I have trouble walking because my feet feel like dead weights.

- Kristin 

Kristin's Pre-Op X-Ray with Multiple Spondyo Slips

Spondylolisthesis Story #7: Anna-Marie (Grade 2)

Anna-Marie - Spondylolisthesis Story (Grade 2) 


I just recently found out that I have grade 2 Spondylolisthesis with a slightly dehydrated/degenerated disc at L5-S1.  I'm only 19, so this whole experience has been just as emotional as it has physical.

It's REALLY good to know that I'm not the only person out there that has Spondylolisthesis. I am thankful they found it so early and that the slip isn't worse. But, when they did discovered it, it was quite a shock. See, I've had health problems since I was born and these last three years have been particularily difficult. Turns out that this is something I was born with and just didn't know it. I've always had back problems/pain, but we all just assumed it was growing pains of some kind. During last Summer, I started noticing some severe numbness in my toes when I bent over for more than a second. I put off going to see my Orthopedic doctor because I was currently in intense Physical Therapy for a ACL Reconstructive Surgery that went wrong. I didn't actually see my doctor until mid-November. When he told me about what they'd found, everything kind of stopped. I didn't really understand the full reality of the situation until they started talking about the "spinal guy," about eventually having back surgery, and how this was something I'd have to deal with my whole life. I was thankfully able to hold it together until I was out of the office. Right now, I'm just trying to take it day-by-day and be thankful for the times when I'm not in incredible pain. 


The severe pain and numbness started in December when I started Physical Therapy for my back. The pain got so bad that I couldn't get out of bed some mornings. They did an MRI and found the dehydrated(leaking)/degenerative disc. I stopped doing the PT because it was irritating the nerves so much. I was referred to the spinal surgeon, but he doesn't want to do surgery or anything because I'm so young (not that I want to have surgery), so he referred me to the best Chiropractor in the state. I'm going to be honest, when I was told to go to a Chiropractor, I was incredibly wary because I knew anything dealing with an unstable spine was tricky and this is my life. I went to the Chiropractor and he is very attentive to my pain and how he does things. I've gotten a new, more firm mattress, and it's really helped. I'm still hurting a good deal, but the pain has dropped significantly, though I still have my moments.

I do have tingling and shooting pains. Generally, the shooting pains go through my right hip, behind my knee, and to the bottom of my foot. I haven't really kept up with the patterns or anything, but I guess I should start doing that. I notice the numbness mostly when I've been sitting a lot, or if the pain levels are really high. I'll be honest, the numbness has been showing up much more often these last few weeks, though I kinda didn't realize until now ...

The spinal surgeon doesn't want to do surgery on my back because I'm 19. I think they want me to wait until I'm much, much older. I'll be honest, I am slightly concerned about it due to the fact my slippage is "unstable" (not that I want surgery, I just want to do the right thing for my spine).

Spondylolisthesis Story #6: Louise (Grade 1)

Louise - Spondylolisthesis Story (Grade 1)

I have a Grade 1 Spondylolisthesis at the L5/S1, with Bilateral Pars Fractures. I have been told recently that I should have surgery for this, which obviously I don't want, as it seems terrifying. They want to pin/screw the fractures in place. Then, depending on some x-rays, they will see how the discs are; if they are bad they want to do a fusion with bone graft. 

I will be seeking a second, and maybe even a third doctor's opinion, as I don't want to rush into any surgery. It is a scary prospect and all the people who have had it must be really brave. My pain isn't constant, and when I don't have it or it is bearable, I often think it's not that bad, or kid myself that it's not something that needs surgery. But then I have times when it hurts incredibly to sit, stand, walk, lie down or bend, and all I want to do is scream. I take Tramadol, which is like an opiate, but that really doesn't do much for me at all except make me sleepy. I quite often think if I feel like this with just a grade one, I would hate to think what people with higher grades must experience!

I have a few other things as well, like Sacroiliac Joint Dysfunction, two bulging discs and Osteophytes, which I think are narrowing some joint spaces. I have been doing physio with someone recommended by the consultant I am seeing. I can't say that it's helping so far (it's been three months, don't know if that's long enough to tell).


- Louise 

Spondylolisthesis Story #5: Victoria (Grade 1)

Victoria - Spondylolisthesis Story (Grade 1) 

I have Spondylolisthesis at L4/L5 and in my neck. The surgeons (2 so far) are recommending fusion. I do not want to do it. It scares me! I’ve already survived Breast Cancer and a lot of surgeries. I am not sure I can handle more. I have pain that radiates down my right leg to my foot (no foot drop yet), and pain that radiates down my left arm (Breast Cancer side). I am getting a third opinion on my neck and back (two slips), but no matter what, I cannot do anything until November 2012. And then the doc wants to do my neck first. 

In the meantime, I have to continue to work. My job is very physical (lots of bending and lifting - I work in horticulture). I have tried PT, the Egoscue Method, Yoga, Acupuncture, Massage, Chiropractic etc. I've even dipped my whole leg into freezing ice water! I have had 9 surgeries in the past 3 1/2 years for breast cancer stuff and I really, really do not want more surgery and the horrible painful recovery that I hear about from just about everyone. Plus, pain meds and I do not agree, so I do not know what I would do to ward off the pain after surgery. I am almost more afraid of the pain meds than the surgery itself! My Spondylolisthesis has caused Stenosis and Bone Spurs, and that stuff is what pinches on the nerve and causes radiating pain. My slip is only a grade 1, but the instability is pretty extreme.

Of all things, I am a yoga teacher! - Isn’t that just too wild. A Yoga teacher with Breast Cancer and Spondylolisthesis in two places. My situation has caused me to explore meditation and I have done advanced training in a form of Yoga called Yoga Nidra (Yogic Sleep). That practice has helped me a lot. My doc told me the worst thing I could do was to stop moving. I am getting a Cortisone Injection in my Lumbar spine this Wednesday and then that will be followed by a series for my neck. I am hoping these reduce the inflammation and the pain. In the meantime, I have kicked my Yoga practice into higher gear, in terms of its physicality. I was really laying off as I was scared but since my doctor said “yes, do more yoga - it’s great for you,” I am doing just that, but very, very mindfully. I am hyper-flexible, so I am really concentrating on balance and strength. I hope all of the above strategies work so that I can soldier on with the help of the Cortisone, some meditation, and staying strong - and keep the surgeons knife at bay. But if I have to do it, I will.

Thanks to all of you ....

- Victoria

Spondylolisthesis Story #4: Elaine

Elaine - Spondylolisthesis Story

I had my surgery 11 years ago. I did feel a bit better after I had it done, but I feel bad again now. I've never been, what you call 'pain-free,' but just carried on. I'm having grating nerve pains in my lower back now, and a ripping sensation on my skin, which I think is nerve damage. Just general pain all-around really. I am glad I had it done though because I don't know how I would've been otherwise. Plus, I think my pregnancy would have felt an awful lot worse than it did. Gets me down loads. 

I was only 27 when I had the L4 & L5 fused, so that's probably contributing to things now. Plus, all the other different pains I am feeling. Like I say, I don't regret having it done, but I suffer with depression now and I don't think I would be able to go through with another stint in hospital ... spent too much time in them, what with one thing and another.

Backache was moderate whilst carrying my daughter, but after no one listened to what I wanted at the birth, I ended up having a C-Section, as she got stuck. Back-pain was terrible afterwards, plus I had the extra pain from the C-Section site. I didn't get pregnant until 3 years after my back surgery, but wanted a C-Section right from the start ... but no one listened!! Some nerve pains occured whilst carrying, but at the minute I'm dealing with three totally different pains, rolled into one. 

1. I have the dull, constant lower back-pain. 2. The grating, nervey pains, which I think is the framework. 3. The ripping sensations on my skin, which I think is maybe nerve damage. They all happen together, which is not nice at all. 

I've always had twinges in different areas, but I think my consultant found this rather 'silly' if you like, and I don't think she believed me to be honest. Like I said though, everyone is different, and personally I can't see how you can be totally pain-free with that structure inside of you, if you know what I mean? I've never been able to lie flat on the floor on my back Post-Op, as my structure sticks in me; sounds weird, but true. Depending on the style of a chair too, the back rest will stick directly into the area where my structure is, which is a very unpleasant sensation. I haven't had any X-Rays or an MRI for a long time because I am afraid, although I am going to ask to be refered again and see just what's happening inside me. I think that's as far as I'm going to go too, as I dont think that I could deal with things as well as I did 11 years ago, as a lot of things have happened in my life since then. 

If I can help someone else ... then I'm happy. I've always wanted to talk about what's happened and how it's affected me in every way, but you get to thinking that people get bored of hearing it. But, at the end of the day, it's no small issue to deal with! Its' hard as hell mentally and physically, and very difficult to come to terms with what was, and still is. 

- Elaine

Elaine's Post-Op Fusion X-Ray

Spondylolisthesis Story #3: Raj (Grade 1)

• Raj - Spondylolisthesis Story (Grade 1)

  
  
  Hi Everyone, This is my story about Spondylolisthesis. Every thing was going good in my life; I just got married in December 2010. Life was looking beautiful. But then I was diagnosed in July 2011 with a grade 1 Spondylolisthesis at L5 S1. I was 26. At that time I took rest from my office and went to many doctors for consultation. I was hoping it was not a big problem, but when I came to know about Spondylolisthesis, and it's effects on daily life, I went into a depression for the first three months after learning this. I was a very active person and I was running my own business, so for this I had to do a lot of meetings, sometimes I had to do more than 4-5 meetings in a day. At that time I was confused as to how to manage everything and what to do next. But, my business partner is my wife, and family supports me a lot. It's helped me a lot recovering from the depression. I've tried the medications, physical therapy and a back brace. After two months my back pain was less. The only thing that hurts me a lot, is that sometimes my mom and dad have to lift heavy weight instead of me, because I can no longer do the lifting. But I am happy that I was diagnosed at an earlier stage.

  
  
  The condition effects my daily activities now, so I have to do less activity. I feel more pain when I sleep on left side, so I can't sleep on left side anymore. At work I usually take a break after 1 hour of being seated. If I work more then 7-8 hours a day, then it hurts. I'm not taking medicine for pain, just doing regular PT. Doing exercise daily has really helped a lot of the pain and so does heat. I love long drives with family and lots of other activities, which I can't do now. I always have fear of long traveling and bumpy roads. I feel pain in my lower back and buttocks when I do longer traveling of more than 1 hour. Truly speaking, I'm not in such real pain now. As for surgery, I'm not thinking of that. I want to spent my life without doing any surgery. Went to the doctor and he said it's not moving forward ... it is stable. But I have to do a x-ray every 90 days.

  
  

  It's Life. Sometimes God gives us lots of happiness, and sometimes we are on the other side.

  
  

  - Raj

  
  

  
  

  
  

  

  Raj Prajapati Pre-Op X-Ray Grade 1