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 ...

Saturday, April 7, 2012

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.)

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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!

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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?