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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.
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Comments

  • 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.
    Eric
  • 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.
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  • 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.
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