About Spondylolisthesis Stories ...

Welcome! Spondylolisthesis Stories is a compilation of personal stories involving individual's diagnoses, experiences, surgeries, and life with Spondylolisthesis.

My hope is that this site may offer a voice and platform for those with the spine condition to share their personal stories with the medical community, fellow Spondyo patients, and the world as a whole. Spondylolisthesis Stories also provides a wide array of information, personal knowledge, support and ideas for those with Spondylolisthesis. Whether you were recently diagnosed, learning to live with the condition, making difficult decisions regarding surgical interventions, in the early phase of recovery following an operation, or further into your journey, this site covers it all!

In addition to general stories about this spine condition, personal stories which focus on the subject of Spondylolisthesis & Pregnancy may also be found. These shared experiences detail the matter of labor and delivery, and include women with both unfused slips and those whom have had surgery prior to pregnancy. It has been my experience that this topic is one which is shrouded in some mystery. By sharing these stories I hope we may be able to shed some light on the subject; offering guidance and ideas to those females with Spondyo who would like to become pregnant but fear the unknowns which this condition can create.

I am always seeking new stories and would love to hear yours! Let your story and voice be heard! Please contact me (Brenna), at spondyostories@gmail.com, in order to share your story here. If you are seeking additional help and support from others with Spondyo, please ask to join the "Spondylolisthesis and Retrolisthesis Support Group" on Facebook. *This group is closed, and therefore, offers a higher level of privacy and comfort for all members to share openly and without fear of judgement. It is open to anyone with Spondylolisthesis (or a family members of those with Spondylolisthesis) to join.

Below the Spondylolisthesis stories you will find several survey questions. If you have Spondylolisthesis, please take a moment to review these questions and select your answer(s). You are also encouraged to join in and participate by interacting in the "Community Answers" board, located at the bottom of the page. Feel free to post questions and comments, share stories, answer the questions already presented, and ask your own questions! I greatly appreciate your participation and look forward to reading your answers and comments!

Spondylolisthesis Stories ...

Wednesday, May 9, 2012

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

Share Your Spondylolisthesis Story!

Would you like to share your personal story and experiences involving Spondylolisthesis? I am currently seeking others to share their respective experiences with the spine condition; including symptoms, diagnoses, treatments, surgeries, and all of the details in-between. Have your voice be heard & help make a difference in other's lives by telling your story here! If you're interested, or would like to inquire further regarding this project and website, please contact Brenna through the Spondylolisthesis Facebook Page: FB.Spondylolisthesis, or email Brenna at spondyostories@gmail.com! I look forward to hearing from you and getting your story posted!

FB Comment Box. Please use this box to elaborate on your survey answers seen below.

Spondylo Polls

Please take a moment to review and answer the survey questions below! If you'd like to further elaborate on any of these polls questions/answers, please comment in the FB Comment Box or participate in the "Community Answers" section below. Thanks!

What grade is your Spondylolisthesis?

At which vertebrae is your Spondylolisthesis slip?

What is/has been most helpful in treating your pain associated with your Spondylolisthesis?

Have you had Laser Spine Surgery to treat your Spondylolisthesis?

Did one or more pregnancies cause your slip to progress in grade?