Lumbar Spine Fusion

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I am currently thinking through whether or not I will have surgery on my lumbar spine. I had a C5/6 fusion almost 7 years ago which was very successful.  Now I am in excruciating pain in my lumbar spine, needing 3 fusions.  One vertebra is out of line by 5cm, and there is considerable degeneration of 3 discs. Has anyone had 3 vertebra in lumbar spine fused, and could tell me how they got on with the operation and what their recovery was like.  I would like to be able to make an informed decision but so far have had only the negative side of the story. Currently I am taking what seems like huge amounts of pain killers but still in pain. Thanks everyone for you help.

1 like, 20 replies

20 Replies

  • Posted

    Hi Jannie,

    Sounds like you are pretty miserable with pain.  If your pain is this bad, do you want to continue to suffer with it?  If it were me I would seek another opinion.  You have nothing to lose, here, you have got to get fixed, from the way I see it.  I had spinal surgery last May with T10 to ilium fusion and posterior lumbar interbudy fusion. (Diagnosis kyphoscoliosis, lumbar spondylolisthesis). I felt I had no choice. Went through physical therapy.  However, the screws holdiong my titanium rods in place are loosening, and the lower end of one of the rods--a stabilizer--has to be cut off before it breaks through my skin.  I have been back in the hard-shell back brace in the hopes that healing will occur around the screws, but from the way I feel, I am facing additional surgery.  Needless to say, I don't want it.  But if that's what will lessen the pain, then by all means I will do it, kicking and screaming. I guess what I am trying to say here is that you may need to weigh your options--with surgery and lumbar spine fusion, or without and be in pain.  Remember too that everyone is different and responds differently to the same procedure. Has your doctor told you that this is an elective decision?  Because I was told I could either go the cortisone shots route or have the surgery.  Being that I am a senior citizen I wanted to have the problem fixed with surgery.  Weigh your alternatives and eliminate them one by one.  The one that's left will be the one you should go with.  Good luck and hang in there.  One day at a time!

    Marcie

    • Posted

      Hi Marcie, thank you for your reply.  You are certainly having problems from your surgery, I'm sorry to hear that.

      I am in lot of pain (24 pills/day at the moment and still in pain - horrible!) My surgeon tells me "it could be worse" if I have surgery. That is my dilemma, I don't want it to be worse.  Of course he has to tell me the negatives, not only for my information but also to protect himself.  However, I am of the thought that I need to go ahead with surgery despite it being such a major operation for 3 fusions. I did the cortisone shots on 2 occasions in 2013 and 2014. First time was great but I relapsed and the second time no help at all. I'm also a senior citizen, retired 18 months ago but the fun didn't last long. You may be interested in my reply to Jeremy regarding the Flexible Pain Respose Workshop.  I feel I have to do everything the public hospital suggests as they are trying to help me, but they don't offer the surgery I need so I will have to rely on my medical insurance which is fine. Once I finish the workshop I will make my decision. I wish I had a crystal ball.

      I hope your surgery goes well, you take good care. Best wishes, Janis

    • Posted

      By the way Marcie, I forgot to say I am in New Zealand. I am presuming you are in the UK?
  • Posted

    Hi Jannie

    I am sorry you are in so much pain. I can understand your dilemma on whether to have spine surgery, it's only natural. Like you, I was in excruciating pain - but down my right calf (not at lower back). To avoid surgery I had two sets of double spine injections over a period of two months and saw a pt regularly but nothing worked. The 0.3 mile walk from the tube to the office was a major challenge: because of the pain during the walk, I had to find a bench every 100 meters, it was getting ridiculous!

    In the end, 11 weeks ago I reluctantly bit the bullet and, on advice from my excellent surgeon, had my transformational lumbar internist fusion (TLIF) at L4/5 eleven weeks ago. (This was my second spine operation in six months; during the first operation my surgeon 'merely' shaved of the L4/5 disc to relieve pressure on my nerves, but, unfortunately the disc bulged again after three weeks and the excruciating pains returned).

    My TLIF surgery was a minimally invasive one. It took 4.5 hours plus I was in the recovery room for one hour. I immediately felt that the pain down my left calf had disappeared completely, this was a marvellous feeling, although I had post surgery back pains (both sides) which I was told was to be expected. Day 1 post op I was walking with the pt, also practicing walking up and down the (13) stairs. I was in hospital for 3 nights. I continued with my pain killers for the quite bearable surgery back pains - 500 mg paracetamol on average three times a day - for eight weeks. I have been free of pain killers for three weeks now. Occasionally I have back discomfort / ache when I slide l to r, or r to l, when I lying down on my back. I do not rush when I get up from lying down, as it takes 10-15 seconds to to feel comfortable. Same when I get up from sitting down. Once up and moving the back discomfort disappears completely. I started going out and about 10 days after the surgery, and driving again four weeks after the surgery. As I mentioned in my original post, on my surgeon's orders I have yet to see my PT (seeing her commencing week 14). Hoping to improve further after a few pt sessions!

    Has the TLIF been worthwhile for me? Yes, definitely! It has served its purpose very well: the pain down my right leg has gone completely (although I now have some back discomfort which I never had pre TLIF, but this is reducing , albeit at a slower rate than I would have liked; also the surgeon assures me that it will go away in time).

    Of course it would be your decision whether in your circumstances you decide to have the operation. But if you wanted my (a layman's) vote one way or the other, I would say go for it, it proved to be worthwhile for me.

    Good luck with whatever you decide to do. Please keep us informed. Jeremy.

    • Posted

      Thank you so much Jeremy for your detailed reply. You have been through a lot of pain too, I can empathise totally. I hope you continue to improve and get back to normal very soon.  Pain is so draining both mentally and physicaly. I retired from work only 18 months ago and the pain has knocked me flat, excruciating and debilitating.  I've also had 2 sets of injections a few years ago, first time was great for a time but second time no improvement at all. Aside from the pain, I can't stand for very long (1/2 hour comfortably if I am moving around) but sitting is extremely uncomfortable, and gets more and more painful as the day goes on. So by the time the evening gets here I have to lie on my side to watch TV. The surgeon keeps saying I don't have leg pain - but he doesn't have to suffer. With the current painkillers (24 tablets per day including paracetamol) I am now able to do my daily chores and look after myself better than the last 7 months but still I crash by lunchtime, with pain and tiredness so spend the afternoon/evening on the couch.  I feel cheated, after working hard all my life, retirement is not meant to be like this!

      I need 3 fushions, if I only needed one fusion I would go for it immediately, as my neck fusion has been wonderful.  But 3 is huge and I am not getting any younger.  I keep coming back to the "what if" situation - If I don't have surgery I will probably keep wondering how I would have got on if I had gone ahead.  And of course, the older I get the harder it will be! 

      Currently I am under the care of the Pain Clinic at the hospital, and doing Physio prescribed by them, and also an 8 week Flexible Pain Response Workshop (group therapy) run by a great psycologist who is teaching us Mindful Thinking.  I don't really hold much hope with this but it is extremely difficult to get any help from the public health system for my problems so I feel I should at least try what they suggest. After that I will decide on surgery.

      You sound very positive, and I know I would be too if I decide to have surgery. I want to get my life back on track and start having fun again.

      Keep up the good work for your recovery, I wish you well.

      Kind regards

      Janis

    • Posted

      Sorry, sorry for all you are going throug.

      You I'll overcome successfully all the pain and dicomfort if this present moment.

      Keep a positive attitude whatever your symptoms may be!

      My warmest wishes.

      🌺🌺😊

    • Posted

      Thank you for your support Ellen, really appreciated! Will keep you posted. Jeremy
    • Posted

      Yes, keep us posted because we care.

      🌺🌺😊

    • Posted

      Hi Jeremy, I have replied to you but apparently it is still waiting to be moderated.  I don't know why but I wish you all the best for a fantastic recovery.  I hope my reply comes through soon. Janis (jannie11)
    • Posted

      Oh dear Janis, I am so sorry to hear about all the challenges you are having. What is the advice from your surgeon? Would it be worth asking them what course / courses of action they would recommend to you if you were close family?

      I think surgery and healthcare is really advanced these days. From what I have seen and read - and this is a layman's view again - three fusions may be doable. I've heard of car crash cases when surgeons have rebuilt entire spines. In one case they had to perform 13 operations!

      But of course it's your decision. Good luck and please keep in touch. Jeremy

    • Posted

      Hi Jeremy, thank you so much for your empathy.  

      I have been told by the Head of the Pain Clinic (he is the anaesthetist who actually recognised me from a previous knee operation - I thought that was rather impressive) that I don't have to worry about the ability of the surgeon, he is the best available here. I live in Auckland, NZ. This surgeon works both in our public hospitals and also in private practice. I have to get surgery privately as the health system does not offer lumbar fusions due to financial/and other restraints within our hospitals, ie theatres, staffing etc. However I still have medical insurance for surgery. The surgeon is being cautious and wants me to think seriously about things before I make a decision and I know deep down that is the right thing for me to do.  I am of the opinion at this stage that surgery is my only chance of getting back at least some normality in my life. Currently my day ends about lunchtime as I am too tired to function.  Thank goodness for TV! He has said it is doable but stressed that "it could be worse". I don't know if it could actually be worse, and I won't know unless I try.  I have thought that even life in a wheelchair without pain (or even less pain) might be better than life now.  I have had 2 appointments with him and long discussions, my daughter was with me but she doesn't want me to have surgery.

      Aside from the pain my biggest issues are standing, and more particularly sitting - no other options left other than lying down, and I am sick and tired of being horizontal.

      Thanks again Jeremy, you keep up the good work and get fit and well soon.  Best wishes. Janis

       

    • Posted

      Hi Janis

      This is a really difficult one now - after reading what your surgeon said ('it could get worse'). Is there an opportunity for you to have second and third opinions from surgeons in NZ (or maybe even in Australia or the US or the UK) before deciding on the course of action? I think this may be a case of (say) four heads being better than two! Would your insurance pay for the additional opinions from surgeons in NZ? Worth a try, you never know! Just a thought. Take care and good luck with the decision making. Jeremy

    • Posted

      Thanks again Jeremy.  You can see why this is such a difficult decision for me. I am thinking he is giving me the worst case scenario which he probably has to do. The insurance won't pay for another opinion unfortunately. I've already spent over $1400 NZD from my savings to get the finest investigation of my spine. Thank you so much for your help with this.  You also have had a very difficult time, and I understand this completely and send you my good wishes.
  • Posted

    Hi Jannie,

    I am s sorry you are in so much pain!  I haven't had a multi-level fusion, but I did have L5-S1 PLIF five months ago.  I can say, I am in worse pain than I was pre-surgery.  My dr says I am a rare case out of his patients, and he doesn't know why my recovery is going so slow.  I am still on pain meds, even though I am 5 months post-op. I have had X-rays, MRI and a CT, and my dr can't find anything wrong with the surgical site.  I do have three other disc bulges, degenerative disc disease of L2, L3, L4, and scoliosis.  My reason for the surgery was spondylosethesis at L5-S1.  I am in the US, and my surgeon is the most reputable in the state.   I am very disappointed with my result - but I have talked to people who have had excellent results.  I wish you the best of luck in your decision!  

    • Posted

      Hi Krista, thank you for getting back to me.  I am very sorry to hear you are still in pain after your surgery.  That is the very reason I am thinking things through carefully before I make my decision. However, I don't believe any possible post surgery pain could be any worse than what I have now! Basically my life consists of looking  after myself and doing household chores, grocery shopping etc.  Out of my home environment I can manage a nice coffee somewhere, or to visit my grandchildren most of whom live nearby. By lunchtime I am so tired that pottering around the house or watching TV/reading/crossword puzzles are my only option.  I find it very isolating and lonely, it is a very small world now.  I am only 66 and can't imagine another 10 - 20 years like this.  I keep coming back to the "what if" scenario, I wonder how things will turn out if I do have the surgery. I do realise, however that there are many people worse off than I am.

      I hope you are able to get rid of your pain in the near future, it is so debilitating and limited.  Do take good care of your self.  Kind regards

      Janis

    • Posted

      Hi Jammie it breaks my heart to read your post and to imagine the bed of pain you are going through.

      Your experience is similar to other people I gotbto know along many years and the docs make them believe that their other patients had successful results.

      Myself I notice similar reactions from Rheumatologists when trating people with PMR , GCA - like me, or both,

      There are health conditions even the docs do not know that much!

      Well, dear Jannie. remember always that our spirit holds our body , do keep in high spirits regardless your reality!

      Think positive and keep your Hope alive!!!

      I have been living these 3 years stuck on this kind of attitude and last time I saw my rheumy he told me that this is the reason my GCA looks like better than he expected it would be by now,

      Take good care of you - take Vitamin B12 and you see a difference!

      My best wishes, a gentle hug

      🌺❤️

    • Posted

      Hi iellen32, thank you so much for your kind wishes and lovely words.  

      I do try to keep a positive attitude, I believe that is what saved me when I had breast cancer 25 years ago!  I've just had another chat to my daughter on my thoughts about surgery. When I explained that the degeneration is not going to improve, I think she has started to think as I am. That is, that surgery is my only chance of getting any improvement in my quality of life so perhaps I do just have to go for it.

      I'm not at all scared of having surgery, I've had previous operations. Just scared of the recovery!

      Thank you again, and the best of wishes to you too.

    • Posted

      Yes, Jannie, you know the best for you to do as you are familiar with the surgery by itself.

      The recovery is the thing.

      At this moment I have a friend of ours who is on the 4th recovery month. He uses the expression " bed of pain" to describe how he is.

      His surgery as he attests was successful.

      As the docs listen to the patient complain they say that he(she) is the only one to have it- as nobody else had such a symptom.

      The truth of the matter the docs don't know too much.

      The same happens with rheumatologists treating GCA,PMR, or both as I said before.

      Through this Forums here on Pstient's site we get a pretty good amount of information!!!!

      Anyway, dear Jennie, you know the best option for you. Besides that you are a person if strong willpower.

      All the very best,

      🌺😊❤️

      They know the technique to perform the surgery and that's all.

      I do not have any personal experience on surgeries I just hear from others.

      The doctors use

    • Posted

      Please read ' a person of strong willpower , not "if".

      Thank you .

    • Posted

      Thank you iellen32, I also have decided that the doctors don't know too much. I think this is because every patient is different, and our surgeries differ as well. Our committment to our recovery programme also differs. 

      Thank you again for thinking of me. Kind regards, Janis

       

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