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Help, Advice, experiences needed please

leanne2204lleanne2204 Posts: 2
edited 10/27/2014 - 7:24 AM in Lower Back Pain
I was wondering if anyone can help as I am a bit worried, and there seems to be a huge amount of experience and knowledge on this site.

In 2006 I was diagnosed with having degeneration of the discs S1, L5, L4, L3, L2 after a car accident, I had an operation on L3, L4, & L5 which removed L4 and a bone graft and titanium cage was inserted in the disc space and the area L3, L4, L5 was bound together with 2 plates and 4 bolts. S1 was left as it was assessed that to do a disc replacement was too dangerous and I was too young, as at the time I was 28 and to do so would leave me in a wheel chair by the age of 40 due to the life expectancy of disc replacements and the problems with the disc above.

I have recently had an MRI as have more problems with pain and muscle weakness in my arms and legs and loss of bowel movements and it has shown I have compression between S1 and L5. I am having a filtration MRI next week with cortisone to show the exact level of problem and I have been told it will either be surgery or a steroid injection and then surgery.

I am very worried. My questions are has anyone else had this problem? The steroid injections (3) I had last time didn't work, so will they work this time? Will I need disc replacement or is it not possible to have the problem disc fused with L3, L4 & L5 above? And is there really a 10 year life expectancy once I have this operation? I am only 38 and have 3 young children (the youngest being 7 months old), and the thought of being in a wheelchair before I am 50 scares me, but also the thought of being in this level of pain and unable to pick my baby up or do things with them also scares me.

Any help, advice, experience, reassurance, experiences greatly received as quite frankly I am terrified and do not know what to expect.


  • sandisandi Posts: 6,269
    edited 10/27/2014 - 7:38 AM

    after reading your post, there are a few things that i am confused by.........a two level fusion l3-l5 would involve 6 screws and two rods......so in order for there to be a fusion involving two rods and four screws, it would have had to been one level, either l3-4, or l4-5.....but not both......when a fusion is done, they secure the alignment of the spinal vertebra by using the screws into the body of each vertebral level to ensure that there is no slippage of the vertebra while the fusion process occurs.
    the other thing that is a bit confusing is that mri's are not done using cortisone.......they do use a dye when it is requested by the doctor to highlight the areas of the spine that they are looking at...i think that you mean that you are supposed to get a new mri done with contrast.is that what you mean?
    there is no disc replacement that can be done at s1, unless you mean between the l5-s1 vertebra? or do you mean a fusion with cage at that level?
    i am not sure where you heard that there is a 10 year life expectancy, but that is a bit over the top.....no matter what procedure you wind up having done.
    the big concern is that you are having issues with your bowels, and the compression if severe enough can cause a syndrome called cauda equina, and it does not necessarily mean that you would wind up in a wheelchair. i know, i have it, and this is my second time....although it can happen , it is when the spinal nerves contained in the cord are damaged at a higher level than l5......https://www.spine-health.com/conditions/lower-back-pain/cauda-equina-syndrome
    whether or not the injections may offer some relief depends on how severe the compression is, and where it is......once you have the new mri done, you will discuss the findings with your doctor, and he will go over the options with you then.
    hang in there, we know that it's scary waiting for the outcome but until then, there is little that you can do....and don't let things you read scare you, as hard as that is, the odds of being in a wheelchair are very slim.
    just so you know, disc replacements ( artificial disc replacements) do not have good results at the l5-s1 level, so that is most likely something that your surgeon may not offer as an option.
  • bigskyericbbigskyeric Posts: 7
    edited 10/27/2014 - 10:42 AM
    Leann - Sandi had a lot of good questions and clarifications to answer...I don't have any experience with fusions but have had 5 discectomies and a year ago had a 4 level lumbar disc replacement done in Germany including L5/S1. There are many options and definitely speak with more than one doctor. I would also suggest sending your MRI to EDITEDin Germany and just see what they say about the L5/S1 replacement. It's an easy way to get another opinion. The point being is there are lots of options for you and don't let your mind get the best of you. I know its hard to stay positive but you will find the right solution. Sandi mentioned the stats for a L5/S1 replacement not being that great but don't discount it. Do your research, I'm only a year out but am completely pain free for the first time in 12 years and I'm a very active kayaker, skier, golfer etc...As you know however, Cauda Equina, is very serious but very curable...Best of luck....

    Post edited to remove physician name. Posting of specific medical doctors or medical facilities is not permitted on Spine Health.
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  • If steroid injections is an option according to your surgeon, I would try that first. For certain conditions it can really help. Have you followed all spinal friendly conservative treatments after your previous incidents? For instance, hydrotherapy (gentle traction based exercises in low impact environment)?

    It is very important to avoid things that puts pressure on yor back (bending, lifting even couple fo Kgs, SITTING, flexion and etc)

    Try to stay positive and be patient. Do all the good things that helps your back symptoms. Personally, I would rather to postpone any back surgeries as long as possible. But you will have to be very dedicated for conservative treatments in order to get any results.
  • Thank you so much Sandi, Eric and shcj, I appreciate your responses, advice and also reassurance and positivity - you have no idea how much it has helped, I have been in a borderline permanent state of terror for the last 10 days since my first MRI, so to hear something positive from people who have actually experienced my problems (and far worse I am sorry to hear) and come out the other side is amazing. To answer Sandis questions, I thought I had L3, L4 & L5 fused together but I got my scans out with my husband and it would seem for the last 8 years I have rather embarrassingly been giving the wrong info to people - it is indeed an L4 & L5 fusion, the disc between L3 & L4 is noted as degenerative but not operated on. The compression I currently have is at L5 -S1 and the MRI paperwork for the scan I have just done without contrast said it is protrusive at level L5 and S1. I am having the treatment in France so the translation of my medical notes is also a source of worry as my french is not brilliant, the next MRI scan I have is stated on the appointment card as "MRI infiltration formulae de cortisoniques" which is why I presumed it was cortisone, but they did also say it was for a contrast test and to highlight and give clarification, so what you said Sandi makes sense and fills in the language blanks for me. When the surgeon in 2006 saw my S1 disc was degenerative and needed to be operated on he said that to fuse it with the others would leave me with too much limited mobility, and a disc replacement was too risky and had the 10 year life expectancy as it would wear the degenerated bone away above over time. So now I am confused as to what they can do for S1 and L5 compression problem as I am unsure if they can fuse it, from what I can gather and what I have done limited research on, and what you have said that seems to be a preferable option than replacement?

    With regards to other treatments shcj, I have pretty much tried everything over the years and thought I had exhausted the options (even down to having plant material laid on my spine and having my aura cleaned as well as all types of acupuncture, remedial therapy oust, physic, chiropractors, relaxation, toning etc), and will gladly take any pointers you have on what to do or try incase I have missed it. I am currently having physio 3 times a week and massage for the trapped nerves and muscle contractions around the general area seems to be helping the most. I had 2 C section births in under 11 months, the last one being 7 months ago so my stomach muscles are pretty much gone at present, everytime I try to strengthen them I end up really hurting my back or increasing the pain (I am obviously doing them wrong I think), I am trying pilates at present, but bizarrely when I do the pulling your muscles in and up from your core it hurts in my back. I tried exercises in water - that hurt, yoga - that hurt, gentle walking - that hurt. I have even tried healing crystals!

    I am off to research Cauda Equina now - thank you for telling me about that, I have never heard of it. I would really like to have as much knowledge as possible before seeing the surgeon next week so that I can discuss possible options and suggest others, and hear his reasons as to why I am going to have whatever treatment he suggests.
  • i am glad that i could clarify some things for you........learning the terminology and what everything means as it relates to you is difficult when we have to enter this world.........i have spent years researching, learning, and reading medical studies, journals, and articles, so i don't blame you in the least by being a bit confused and lost in trying to take all of this in.........it can be overwhelming and especially when we are faced with options or choices to make and we don't know much about them.....
    as far as artificial disc replacement goes at l5-s1.......the outcomes have not been all that great, and there are contraindications for using one in the lumbar or cervical spine......i will include several links that may help you, but i would also strongly encourage you to go to each manufacturer's website, in particular the one that the surgeon is recommending and reading the physician information, not just the patient information regarding the devices. each one has specific criteria that must be met in order for a patient to be a good candidate for adr........if you have any of the contraindications, then going ahead with having one implanted is not in your best interests, no matter what the surgeons tell you.
    i've been dealing with spine issues since 1992, and i researched and researched and researched my options, over and over, especially adr because it sounded like such a great option, but over time, i have found that while adr in the cervical area generally has a better outcome, in the lumbar regions, especially l4 , l5, s1, it seems to accelerate facet joint problems, and often results in revision surgery to fusion. the device has to be inserted from the front, and there are major blood vessels that run in front of your spine, so having to move them to insert the disc, then if revision is needed ( removal is very , very difficult, and results more often than not in fusion surgery since removing the device can cause damage to those blood vessels and most surgeons are not experienced in that type of surgery), so fusing the device in place in the option, which doesn't correct the problem. the designs of the various devices are also a factor, some have keels , some have plates so there is a lot to learn about the devices, the rom, rotation, flexion and extension of each device...
    anyway, i will include the links and let you make the decision about what you want to do....



    if i can be of any help, feel free to send me a pm and i will be happy to help.....
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