Aidpage

Hello to all of those who battle with the very challenging, and extremely painful spine condition, Spondylolisthesis. I am thankful for the internet and the opportunity of connection it provides for all fellow sufferers of this very painful, and sometimes all too rare condition, at least when it's a high grade or complete slip Spondylolisthesis. I encourage anyone who finds themselves up late at night as a result of the massive and nagging pain emanating throughout their bodies .. in their back, throwing down their legs, .. making it hard to breathe, let alone sleep, .. to share their stories, read my blogs and send me a message. I write online about the subjects of chronic health conditions for the very purpose of reaching out to others, providing support and understanding, offering ideas for relief, along with a number of other things. I hope that my experience with these conditions may bring some comfort, in addition to offering some new perspectives, clarity, and perhaps even offering a few different resources which may help to avoid life changing surgeries. Please don't hesitate to contact me here or through my other webpages on blogspot. The links are listed above, as well as at the end of this post. I did not have the support, guidance, and knowledge I so desperately needed during my many surgeries and procedures, and wish that the internet, and it's ability to connect so many people with similar problems, was available at that time to the capacity it is now. I want desperately for my extreme pain and ongoing struggles to mean something .. I want to help someone so that they may avoid some of the pieces I endured, and continue to deal with, as a result of my spine condition and it's severity. So please, if you have a story, a new or old diagnosis, if you want to share your experiences or ask me questions, please don't hesitate to do so anytime! And for now, in this moment, here's to an hour with less pain!

Spondylolisthesis: Spondylolisthesis

ADVOCATING FOR HEALTH: The Many Faces of Health & Illness

For anyone that has an interest in reading more about my story, and other information related to Spondylolisthesis, please go to my pages on Blogspot.com. 

http://spondylolisthesisgrade5.blogspot.com/

Hi,

This is my case from 20 years ago. I would be willing to share the details of my procedure/s and my status 20 years later.

http://www.spineuniverse.com/professional/pathology/degenerative/high-grade-l5-s1-spondylolisthesis

CP

Incredible. www.spondylolisthesisgrade5.aidpage.com deserves an award.

Hi Lilly,

Wow, your story sounds very familiar! ... I get excited when I actually hear from someone with the condition, as there are not too many of us out there, especially with such a severe grade. This sounds bad, as I don't wish such pain, and the many issues that come along with this condition upon anyone!  In 1996/7 I was so desperate to find anyone else with this condition, anyone whom had gone through surgeries, and so forth, and there was nothing out there. That is why I have begun to write about it, sharing my story in hopes that I might be helpful to even one other person out there suffering with this, as doctors and the medical community in general are not too terribly familiar with it, especially when it comes to treatment. Your doctor is right in the sense that there are fewer surgical options available after the age of 18-20. It is likely that one will try to push you into a fusion, without any correction, meaning that they would stop the slip where it is now without doing anything to improve it. And, honestly, while stopping the slip is a good thing, fusing it at a 5, like mine, is not optimal. Not too mention the fact that any fusion, guaranteed over time, will only create more pain and deterioration and degeneration of the spine above. 

Grade 5 and Spondylotopsis - complete slip and fall - are pretty unique and docs have only had so much experience with patients like ourselves. As you probably read, I went from the age of 10/11 to 14, before I was officially diagnosed, and that period of time was critical, as somewhere in there my spine slipped from a grade 2 to complete slip of more than 3 inches in height. Same sort of story with the doctors ... telling me and my parents that I was lazy, trying to get out of playing sports, and needed to do stretching ... um .... yeah, not so much! Later, during my medical malpractice case it was discovered that not only had my x-rays "disappeared," but that one of my doctors actually made a note in her records when I was 11 that she was "surprised I was still able to walk." Even though she had this knowledge she failed to diagnose the condition, tell my parents that yes, there was a reason I had this pain (and was not lying!), nor did she refer me to any specialists or any other practitioners for that matter. Also, I wanted to note that I had a fall similar to what you mentioned in your message too, and while this surely would jar a back and possibly make matters worse, it is not the cause of the condition. Usually we will already have Spina Bifida, which if not severe, goes undetected, and therefore, undiagnosed. We are missing a piece of vital bone that connects/supports part of our spine (the location of the slipped vertebra). 

So, you are 24 years old? I have several questions for you regarding your specific case ... if anything is too personal or uncomfortable to address, that's okay, but let me know as I will get straight down to the point of all the symptoms, problems that result, types of treatment, etc.  You are very flexible, or were at a younger age? How far has your pelvis twisted forward, and is your rib cage getting close to touching the top of your pelvis ... making your abdomen/mid section very compact? Can you visibly see a protrusion at the location on your back? Same question for your pubic bone. Are you falling a lot, experiencing sharp shooting pains, have any issues walking, and lastly numbness? On your x-rays, when viewing the spot, is the vertebra on top still touching the on below, enough so that if it were to be pushed in, it would align? Or, has is begun to slip down, so that the one on top is starting to, or completely paralleling the one on the bottom? 

I don't think you've read my pages on chronic pain yet, and I would suggest that to start, as some things in there might be helpful, and then you can let me know your thoughts on it and any questions you might have. Of course, this condition is different and there are certain things that I would suggest that only apply to this condition.  Where do you live? I would suggest that finding a certified Soma Massage practitioner would be very beneficial right away, and I would be happy to help you locate one in your area. You can read about my experience with Some massage on my pages, and see how it not only keeps my body under control today, but actually began to move my spine before my surgeries. Soma massage therapist are not the same as any other massage therapist, not deep tissue nor swedish, etc. Rolfing is the closest to Soma, but is very rough and would like be too painful for your condition right now. Another thing to begin doing right away is getting in a pool with light leg weights and doing exercises with your legs, where the concept is to slowly begin stretching your spine. This has been very helpful for those with an unfused grade, as it's natural, but requires a lot of time and dedication. We are talking nearly everyday a week in the pool for at least an hour, even better, 2 hours. I realize that this is a lot of commitment, but, if I could go back, this option is soooo much better than having your back permanently fused at grade 5, and because the process is slow, it is much less likely that you will experience permanent nerve damage or complete paralyses. One case I was advised of when I was going thru my surgeries was of a young girl who did this for 3 years and actually resulted in moving her spine back to grade 1, then fused at this position (the position your spine is supposed to be in!). Combining the pool and the Soma work would be a lot of time and energy for you, but in the same token it would be the better route than a continued downward slip (literally), and avoiding nerve damage, as well as chronic pain, would seem to be the best goal. 

Are you experiencing issues with urination, ... like where pee slips out? Another piece of this is numbness and general loss of feeling in the vagina in general. Bowl issues, or lack of control of the bowls, can be another thing that can/will be affected.  Are you sleeping on your stomach with one leg up to the side? This helps to relieve the pressure on the sciatic nerve. Important to put a pillow under your belly/hips region when sleeping this way, if you don't already. I am guessing that with your level of pain and distortion/stiffness, that you are literally unable to do most physical activity, but if you are pushing yourself to do anything upright, stop.  No running, no long period of walking (only on a treadmill for a short spurt of time, concentrating on your gate, as we begin to compensate in order to walk and function, and it's important to train those nerves and keep them awake), no jumping, etc. The two type of exercise besides the pool, are pilates (but all on the floor, and utilizing the altered/or less strenuous positions - if it hurts, don't do it) & yoga. One thing to remember is that due to the chronic and severe pain, your body is using it's energy to try to heal and deal with pain, which will often leave you exhausted long before the "average" person. No matter what any doc says, please do not get any cortisone shots, period. Not good. They like it cause it's a quick fix, but it only damages the region where it's injected, and eventually, just like chiropractic, it will completely destroy your cartilage and joints. 

If your doctor(s) haven't already given you prescriptions for pain medication, they need to. Pain medication is not something that is obviously desirable to be on forever, although, sometimes it's just the case, but, with that much pain, especially once you begin some form of daily work (like the pool and soma), your body needs a break from the pain, and it very well might actually provide you with extra energy rather than less. I will stop for now, as I don't want to overwhelm you. I really hope that this info. has been somewhat helpful, or at least a place to start. I hope that I hear from you again, as I look forward to making my experience a positive thing in making your life better.

I know that you are in a lot if discomfort, and it probably would be the best thing for you not to be working full time and really focusing on taking care of yourself, your body and mind. Just like myself, you have had difficulty getting others (doctors in particular) to take you seriously and truly understand, ... didn't want to rock the boat and cause problems, ... I get it, I did the same. And now, from my point of view, it seems crucial that you address this to the best of your ability as you do not want it to get worse. I realize that this may not be possible to stop working completely, but hope that your family may be supportive of you and the situation. Definitely apply for any type of assistance related to disability, etc. It seems that your mom is very loving and concerned, and might also need someone to talk to that has been there and back? My mom has been thru this with me every step of the way and I know that she would be more than delighted to communicate with you and your mom if either of you are interested. 

Avoid getting pregnant, as this is very stressful for someone with this condition. Spondylolisthesis was actually first "discovered" about 40 years ago when a woman in labor could not deliver as her slip had resulted in the birth canal being completely shut off. This is the same case for me, and I would guess you as well, and would require c-section, likely under general anesthetic, rather than epidural. 

Again, I hope to hear from you! Take care of yourself. Many blessings, Brenna 

Hi, i've just stumbled across your story and was overwhelmed to read what you've been through. I've been living with grade 5 Spondylolisthesis for the past 10 years since i was 14 although i've never really known it. Suppose i'd better start from the begninning... i think when i was around 13/14 i fell at a friends sleepover, and that was the first time i remember feeling back pain. I ignored the pain and discomfort for days assuming i'd just really hurt myself.. life wasnt great at home and i suppose in my heart i knew i'd done something serious to myself but i just told myself it was growing pains!!I didnt want to make life more stressful for my family i suppose! sounds utterly ridiculous now! about 6 months later i finally realised the pain i'd been going through and the fact i couldnt bend forwards.. i finally told my mam, who went into a state of blind panic, blaming herself for not noticing, bless her. I wasnt taken seriously by 3 doctors, all telling my it was a sports injury..one simply saying to me 'you have the back of an old lady'..charming.. anyway my sister bascially threatened the GP and we got an appointment at the hospital to see a consultant. in following months my scans were lost, the consultant was on holiday on my appointment date etc. I had the condition explained to me, vaguely..i didnt have a clue what was wrong with me to be honest. I felt like i was wasting doctors time! i went away and have just lived with it for the past 10 years seeking no help, until a few months ago when the pain became so acute even i couldnt handle it..and i handle a lot of pain (as you can imagine)! so i went back to the hospital, got new MRI's and couldnt believe my eyes when i saw my spine... it just amazed me.. So now i've basically been told there's nothing they can do for me, that i'm lucky that my legs and bladder havent been affected and i dont really know what to do. They said i have to stop working, start swimming and that they'll keep check on my for..well forever! im still really non the wiser as to whats going to happen to me in the future...and just hoped you could give me some advice on things you find helpful for pain etc.?... any help would be appreciated.Lilly

Hi,

There are tons of things I would like to say and ask about your grade 2, but don't have much time at the moment. I haven't been online for a few days, and just read your message about pregnancy and Spondylolisthesis. I am wondering if you have read any of my other pages and my bio? Profile page has my bio, and under links you can find different pages I started, some of which are related to my Spondylolisthesis, like the chronic pain one. I can not tell you all you need to know, as I have only been 12 and 16 weeks pregnant...but might have some information and suggestions that will be of help regarding cutting down on the pain, things to do and people to see to avoid having the condition get worse, etc. I am wondering how old you are, how long you've known about your condition, what you've done about it,...and I am guessing this is your first pregnancy? Most docs aren't too familiar with the condition, but many won't admit it, ... just skirt around the subject...god forbid they not know everything, ya know. I realize I sound sarcastic, I have seen too many doctors/specialists,etc., to count, and have been through the ringer. Has your OBGYN told you that you'll need to have a c-section? The condition was originally "found" and/or "labeled" when a woman was in labor and they discovered that her birth cannel was cut off, due to the slip, how the ribs and pelvis fall together. I will leave you with this for right now, but would be happy to tell you all my knowledge and experience on the subject. I could not go thru with my second pregnancy partly because of my back, but don't worry, my slip was beyond a grade 5, a complete slip with three inches lost in height. Now it's fused at grade 5, and I have a lot of ongoing problems. You are lucky to have been told you have it, and there are things to be done to prevent further slip, which would be the goal. I have combed the web for women that have gone full term while struggling with Spondylolisthesis. I did come across one site, where several women had shared stories,...I will try to find it in my past searches. 

I am glad that you found my information about it...That's why I started writing online. There was no help for me, and even less detailed information. You are only the second person to write to me with the condition. I am guessing that you are having to lay down a lot (on your side, with a pillow between knees - you preferred on your stomach, but can't now?)? Belly sleeping with leg up to one side helps relieve the sciatic that's being impinged upon. Stretch as much as you can. Can you get to a pool? 

Oh, tell me, where are you located? So I can see if there is a Soma massage practitioner near you...it would be tremendously helpful. 

Hope that today you are feeling somewhat okay, know it's hard and no fun! Plus, no one understands, but again, yay for the fact your doctor even diagnosed.

Many blessings, Brenna 

for the person who wrote this blog- it is so hard to find info on this! my physical therapist thinks i should have a c-section because i cant push the baby out. it's unstable and causing pain. anyone go through this?

i'm a grade 2 spondy (at 50%) and 25 weeks pregnant. anyone go through a pregnancy with this? having tons of pain. i'm worried i'm a grade 3 now.

Hi Tammy, 

Thanks for checking my invitations out, and your thoughts and prayers are very much appreciated. I hope that we can chat in the future, I don't know if we have things in common, therefore stories, ideas and wisdom to share in this crazy chaotic time, but I am here to listen if you need a friend. Hope that you are doing well. 

Blessings, Brenna 

THANS I WILL CHECK IT OUT!

AND ADDED YOU TO MY PRAYER LIST

TAMMY

A PERSONAL STORY: SPONDYLOLISTHESIS GRADE 5/SPONDYLOTOSIS

Vertabrae Slippage, Grades 1-5, and Complete Slip (Spondylotopsis)  

 Definition of Spondylolisthesis: 

Spondylolisthesis is a spinal condition in which the vertebra slips forward from the vertebra below. Spondylo means spine, and the word listhesis, literally means to slip. While this condition is actually fairly common in the population, it is rare for the condition to slip to a degree that is great enough to create problems. Physicians and the medical community label the varying degrees of slippage, from least to most severe, as grades 1 through 5. A complete slip, beyond that of a "grade 5," where the vertebra no longer sits on the other vertebra, is called Spondyloptosis. This condition can occur at any vertebra level, but is more commonly seen in the lumbar region of the spine. This is the area in which I experienced my Spondyloptosis. I am now considered a grade 5 following numerous surgeries, procedures, and a full body cast. There are a number of debated "fixes" (surgeries/procedures) for Spondylolistheis, but due to the infrequency of the condition becoming extreme enough to require surgery, they are more experimental than common practice, in my opinion. I am not a doctor, nor am I an expert on this condition, that is, if you consider an "expert" as someone whom has credentials in the medical field. I have simply dealt with this condition, first hand, for my entire adult life, and the majority of my juvenile years as well. My hope for this page on Spondylolisthesis is to utilize the power of the internet in order to reach as many individuals, in all age groups, whom may be dealing with this condition in their life. Whether the given condition is labeled at a level 1, or if the case is more severe, I hope that my personal experience, insight, and research with regards to the spinal abnormality, may help as many individuals as possible. This condition tends to be less well known than other conditions and diseases, and I found it difficult to connect with any fellow sufferer's during my painful, tough, and life altering struggle with this extremely painful condition. There are many "experimental" fixes for this condition, which are ultimately determined by the grade level found in the patient. I believe that it is highly important for anyone whom faces decisions regarding medical intervention be able to obtain as much information, even the detailed and nitty gritty (if you will), so that they may truly be able to choose the best option(s) for their specific case. Not only are there a few different surgical and medical procedures as possibilities for treatment, but there are also a few alternative options that may work well for both an intervention, along with possible combination of treatments, which may result in a more rounded and promising future for a patient. Treatment is often determined by the severity, but even in the most severe cases, there are a few options that may not be presented or addressed by a provider, therefore limiting options, and resulting in a rush for the operating table. Now don't get me wrong, I am not opposed to surgical intervention, as my condition was very severe, and without immediate intervention, my overall quality of life would have been bleak, even deadly. I would also like to note, that like many surgeries, whether it be on your spine or your heart, surgical intervention may assist in increasing the overall quality of life, but it rarely, if ever, makes one "normal" again, nor "fixes" the health issues completely. This is a myth. There will always be a sort of "life long up-keep," which is required to assist in allowing your body to work the best way possible, in a less than normal state. Again, this is my opinion, which is based simply upon my personal experiences, observations, and research. 

I hope that anyone whom may be just learning of this condition (parents who are educating themselves with regards to their child's recently diagnosed condition, any adult that has just been diagnosed, and is seeking information, resources, options and help, along with those veteran Spondylolisthesis sufferers), may take time to research the condition to the best of their ability, ask many questions, thoroughly investigate all options that may be available (both western medicine and alternative health care), and feel free to contact me with any questions, advice, stories, or anything else that may be prevalent to the goal of assisting each other in making the pain, along with our general quality of life, a little better. This condition is a life long presence and battle. It can be very scary, painful, and all around difficult. I will share my timeline from my earliest pain and symptoms, to my surgeries, and ultimately, my current struggles. I pray that this page may help both those facing a Spondylolisthesis diagnosis, along with anyone whom finds themselves seeking support for a family member or friend. Even if I only manage to reach just one person struggling to stay afloat in this overwhelming process, I will be grateful that my painful experience was able to make another's less frightening and isolating. I know that there are others out there, and I cannot allow those who are facing the same daunting unknown, struggle through the darkness, when I have already walked the journey. 

As a last note, if you are dealing with ANY chronic health condition, please take a moment to read both the poem "Footprints In The Sand" & "The Spoon Theory."  ~ Blessings ~