Spinal Fusion

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At long last and after suffering severe, debilitating back and leg pain for over 8 years, I have finally been given the OK to have spinal surgery in a few weeks time (depending on NHS waiting list!).

I'd love to hear from others who have had or are thinking about having it done.

I have L4/L5 burst disc and degradation with spinal stenosis and bilateral impingement of nerve roots.

How did your surgery go? Have you had dramatic relief since surgery or was it a total waste of time and you have had no relief or even things made worse?

Love to hear from all our there.

Thanks

Stu wink

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  • Posted

    Hi Stuart,

    I have had problems with my back my whole life. A year and 5 months ago I started to get worse. It took about 10 months to go through all the 'processes' of Physio, pain killers, pain clinic etc. Before I finally got the scan I'd been continuously asking for.

    The scan showed 2 slipped discs. L4 and L5 one disc was pretty much crushing my sciatic nerve causing constant pain, burning sensations, numbness in places, stabbing pains etc etc. I struggled to carry on working whilst Dr's tried me on various nerve inhibitor pain killers. I tried having a Root Nerve block injection into my back. This helped for a few days.

    On March 18th 2016 I had a double discectomy. I was in surgery for 2 and half hours. There were no complications and the prolapsed portions of the discs were successfully removed. I was woken up at 4pm after the op. The next day I realised that the pain and numbness in my leg had totally gone. I think I was so happy I cried just a few tears.

    I initially had weakness in my hips and buttocks - which meant I couldn't really position myself in bed and struggled to get out of bed. This lasted maybe a day and a half, after which I was able to very carefully and painfully turn over in bed, get myself into a half sitting position, and after a couple of attempts - stand up. Pain killer wise I was given paracetamol, ibuprofen and morphine. Also various different laxatives to counteract the effects of the morphine. If you find you are in a lot of pain, they should tell you that you can ask for a morphine 'boost' every 2 hours. You may not remember them telling you, trust me though it is worth asking for it - it was the difference between me being able to get out of bed without being in a lot of pain. It really helps you push through the first week after the op. Its 13 days since my op. The pain in my leg is still completely gone. A little of the numbness has come back in my toes - but I can more than cope with that. Walking wise you really have to pace yourself. I found sitting to be most uncomfortable initially. Its only last couple of days I've really been able to sit for longer than about 10 mins. Lying on my back with my knees slightly raised has been comfiest so far.

    I can't believe how good I feel so soon after the op. My walking is slow and it is uncomfortable wound wise. I can't walk with anything heavier than about 3-4kg in my hand. It's too uncomfortable and reduces me to crawling speed. I did walk a total of 2.9 miles on Easter Monday throughout the day. However I paid for it the next day. It really is important to pace yourself. Its definitely been Worth it so far.

    I hope it all goes well for you. If you have any other questions - feel free to ask. Good luck.

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    • Posted

      Hello alison so pleased to hear that you are feeling better. Again like the question I asked Stuart, who was the surgeon and where do you live.

      For me its very important because my surgeon says that to operate on me it would be dangerous. Whether it was a bad day for him ( which it was) and my age - time is running out for me. I go to the pain clinic in two weeks and I am going to read the riot act.

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    • Posted

      Alison

      I'm so pleased to hear things are going well for you so soon after your surgery and that you continue to get stronger every day!

      My surgeon Matt did discuss discectomy with me but thought it wouldn't benefit me as most of my pain is in my back although I also have severe sciatic and neuropathic pain. That's why we opted for spinal fusion surgery.

      Like you, I'm praying that I get at least some relief from the constant agony I live in day after day!

      I take so much pain medication it affects my daily life and I'm fed up! Tramadol, gabapentin, Co codamol and fentanyl.

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    • Posted

      Hello Alison, sorry if I don't comment on everything you have said if I go further down on the message box, I lose your comments. One of the bad designs of this website.

      Yes, I did everything you did, including research and have to go through everything I had done in the UK, in Spain which is an absolute crazy thing, I will be dead by the time they do physio, pain killers, nerve ablation etc. etc.and Yep exactly like you, the injections don't last many weeks. In spain they give you big shots and do them over 3 weeks. I am not sure what ml they use though. I also had the same op and unfortunately it didn't work.  I say that, I had the operation privately (no insurance) £7,000 and then the appointment afterwards(I had to ask for it) I had pain even when I left the hospital. I take regularly  except Lyrica, Tramadol and Paracetamol but did you see in the newspaper Paracetamol does not help with pain. ~They help in the morning first thing and then although I take more during the day, the pain gradually comes back. The dr said it was a low dose but then I don't want to knock myself out.

      I think I have said most things to Stuart.  I am now waiting for the Pain clinic in 2 weeks and if I get my cortisone injections I will be thankful. So far as an op is concerned the neurosurgeon kept the door open. 

      But having said that, I consulted 2 private neurosurgeons and both said it was a doddle and they looked at the X Rays so whether it was just a bad day when I said the State Surgeon I don't know. There was a young man who was rushed in before me, going off his head, but I don't know what was wrong with him, he was being told to be quiet etc but I am sure it did knock my surgeon sideways.   He is supposed to be good.  To have your op here in Spain privately would cost 20,000€ and althugh I have it, would it be successful as I have already had two ops (one of which was a decompression at the usual levels and the first one an experiment which I thought he was good at but found out that he hadn't done the op before and had the representatives of the company in the theatre with him).  

      Dr March says that its dangerous to operate with scar tissue, but I read of people having ops with scar tissue.   I am wondering what the last one did, even his secretary didn't know but I rang to have it confirmed as I had the bill.  So - so many mistakes can be made and you are one of the successful ones.  Good on yer, I hope you get to be fit and well.

       

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    • Posted

      Hi Enna, I live in Nottingham. My surgeon was Mr M. Tsegaye although so far I haven't actually ever met him face to face. I've always seen assistants or colleagues at appointments. I thought I might meet him on day of op but I didn't - not awake anyway. The hospital is also a training hospital. I am told spinal operations are their bread and butter. My appointment was originally 24the February, but it had to be moved because of a number of emergencies were taken there and also I imagine the strikes had an impact.

      However I got there in the end. They did say that there was a risk of scar tissue developing which could possibly restrict the nerve again. Like you said though - we are all different. I think the most important thing for recovery is not to try to do too much too soon. I do know somebody who had one disc done. She believes hers failed because she didn't take it easy for long enough. I hioe you are able to get yours sorted, or at least get some pain relief. Hospital is Queens Medical Centre. Good luck.

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    • Posted

      Hi Stuart, yes they said the same to me - that the op was more for relief of sciatic and neuropathic pain in leg, but that some cases did see relief in back pain too. Before the op I was tried on Gabapentin, and pregablin both of which made me really drowsy and didn't help with nerve pain. They never offered Tremadol or codeine. Eventually they tried me on Duloxetine which was originally designed to treat depression, but has a side effect whereby it reduces nerve pain. It didn't make me drowsy and it reduced the pain to a more manageable level. With these for the back pain, I was taking Naproxen and paracetamol. I really fo hope that you get some relief. All the best, Alie
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    • Posted

      You know alison, I think I am getting cynical - when I saw the two surgeons for private surgery in Valencia they both said that ADR was a doddle that they were doing it all the time, and so did the orthopaedic surgeon who operated on me in Warrington.  I just don't believe them now. Especially when the surgeon in Middlesborough said there was nothing wrong with my back and I had 2 levels herniated. Yes they go on about scar tissue, I am going to look it up because the last surgeon told me he couldn't operate and as he looked at the X Rays, he was bothered at what had gone on 5 minutes before - and I said scar tissue )I should have shut my mouth) and he said yes. So whether it is or it isn't I don't know.  

      If its a teaching hospital there will be a number of people there, Alastair also has a list of hospitals/surgeons (I haven't heard of the one you mention) I have spinal stenosis so it may not be possible to do anything but i get so frustrated, not being able to walk so far, there is so much to see and so little time lol

      Now steady there girl, things can wait and including dusting lifting shopping etc. Just take care.

      As time goes on Aliston, come onto this website - or any other website - and tell people how you are getting on because that is one of the things people don't do.  They are so elated about their successful operation they forget other people who are considering the same. 

      Alastair on ADRSupportUK always says slowly slowly wins the race and I'm afraid I am one of those people who left to my own devices would have mucked about and spoil the work done but now, I think of the work they have done and how hard it has been getting there.  I don't think I want an op actually now, I have read so many stories on this web site now that I might have an ablation and if that doesn't work I will continue to take pills. God I am 73 coming up and although they work in a fashion I can't see me taking them until I flip my clogs.   Very difficult situation.

       

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    • Posted

      Hi Enna, I can't blame you for being a little cynical. I am 39 and have had a few occasions where I was unable to get out of bed due to back pain. Just before the disc problem started a year and 5 months ago, I was at the stage where I would go walking every sunday with friends for about 13 miles. It would cause me back pain and probably wipe me out for the next day - but I could do it. The furthest I have been able to walk since this started is 6 miles on one occasion, and around 3-4 miles the last few months. I Dont want to risk messing the results of this op up - it's taken me so long to get to this point. All medical staff I've seen though have said walking is the best thing to aid recovery as long as you pace yourself and build up gradually. I will definitely keep posting on these sites as I struggled to find any reports from ppl myself post op and would have found it useful beforehand. I am glad I took the risk and had the op. I hope I stay glad and nothing goes wrong with it. I hope that you manage to get some pain relief soon. All the best.
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    • Posted

      Hi Alison

      Good to hear that you are doing well after your op and remaining positive about your future.

      I've got to the stage now that no matter how much medication I take, I still get little relief and just hope that the op can at least give me some modicum of relief. On to of all the other I've now been prescribed Oramorph to help with break through, which seems ironically to be every day now. I really can't wait for next Saturday and beyond. In the hope that my future will change for the better.

      Thank you to you and everyone for sharing your experiences. It's good to know there's others there to support.

      I will update all when I've had my op.

      Stu wink

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  • Posted

    Hi Stuart what sort of surgery are you having, where do you live and who is doing your surgery. It does make a difference.

    I too have had a lot of problems but wait until you answer my questions.

    Enna

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    • Posted

      Hi Enna

      I'm having a spinal fusion surgery and it's being performed at St George's in Tooting. I opted to be treated by neurosurgeons as I feel they are better at delicate spinal matters than orthos (just my opinion) and I'm being operated on by the very talented, Matt Crocker.

      Regards

      Stu

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  • Posted

    Well Stuart, you have a good hospital, my daughter did her Phd there and its excellent. Lucky you.

    Can't say anything except that I had decompression L4/5 and L3/4 and I went private because I was desperate - it didn't work and I went to a surgeon who was supposed to be good.  I have my ideas about what happened but don't want to say much.

    I belong to ADRSupportUk forum and they could give some help too although ADR Arificial Disc Replacement is not wholly done in the UK now, a lot of them haven't worked and surgeons are not now doing to op.

    Like Alison, I have had problems with my back for over 10 years and so far no-one has helped - unfortunately but has had ideas and those ideas have made it impossible to have another op (my surgeon said its now dangerous to operate). So I have to live with it but then so many other people do.  My advice would be Don't rush things - as a friend says on ADRSUpportUK - slowly slowly wins the race. And its true. I remember my first op, I was up and walking round a garden centre when I came home from the hospital, I was elated.  Wrong. 

    Wait a little bit after your op and if you feel good, put the surgeons name onto ADRSupportUK or tell Alastair through the forum.  There is a list of surgeons who perform these delicate operations and more and more surgeons are being trained for these.   Neurosurgens I would say are the best, but then I had a neurosurgeon and he was trying something out and it didn't work.  

    Can I say this, that everyone is different it important that you know this and that you take your time to get well.

    In 2004 when the NHS made you go to a surgeon in your area was an absolute nightmare, Cumbria didn't have one. In fact I don't know of a surgeon in the north at all.  I went to Middlesborough and unfortunately he let the Registrar read the X Rays and he said there was nothing wrong with my back - full stop.   In fact there was and I saw a really good surgeon sailing down the river.

    You sound as though you had sciatica with your leg which is what I have, its flipping painful, but a hot water bottle and Lyrica helps.  I have spinal stenosis too which is the root of the trouble.

    Yes, I am better than I was with the help of exercise and medication and have asked to go to the Pain clinic after the surgeon said an op would be dangerous, and going to ask for a cortisone injection in my thigh and bottom, that worked a long time ago, so I am trying to lose weight with the idea that the medication might put weight on. If you see what I mean. Hopefully I can walk better with this sciatica.  So so painful isn't it.  I also have an idea that I have trouble in my hip which I will mention, its just that sitting doing gardening, my hip is so painful which you wouldn't expect!!! I can only walk for 1/2 hr so its 1/2 there and 1/2 back in pain but I am so used to it now.  I can, if pushed do 4 hours but I am nearly in tears when I get to sit down.  So the last fiestas, we stopped and drank a cold drink and I made it.  But not 3 days like I used to do.

    So let us know how you get on or any questions you may want to ask.   

     

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    • Posted

      Thanks for the info Anne

      I'll be sure to look up Alistair like you suggest.

      I can't begin to appreciate what you have been through. But you seem to remain so positive which is so important.

      I've really struggled with things over the years to cope with the constant pain and having to rely on such a heavy drug regimen. I just want to be able to do the normal things in life without having to rely on meds to cope.

      I know I'll probably never be free of medication for the rest of my life, but I just hope that the surgery plus a long restful recovery will do the trick.

      Where did you have your original surgery done? If you mind me asking. How long did your recovery take?

      Regards

      Stu

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    • Posted

      Well its all of a 10 year no 12 years + journey and I am nowhere near the end.  Before I tell you, I am on a diet and Thursday night I was beside myself with pain, I laid on the bed and tried to sleep but it was all too much. So we talked and think its cidar vinigar & water. Saturday I could hardly move it brought such pain, couldn't sit, or even lay on the bed it got so bad. |Last night I slept in the spare room and got up at about 4ish, guess what, the pain had gone, I admitted that Had lifted garden pots so whether it was that or cidar vinegar I don't know. Even took an extra 2 Pazital and Lyrica.  I got up at about 6ish to the sun and felt fine, Been out to see the Kite Festival in Valencia, excellent.

      Do you remember when you couldn't go out of your area to consult a surgeon well just before that my dr said I couldn't go to anyone in the area, I eventually knew why. We didn't have anyone sufficiently proficient to do any operations. So it was I went privately to see an Indian surgeon in Preston(if I went back to calculate how much I have spent privately I could pay for an op which makes me mad) I picked him because I knew he was a neurologist albeit he had done brain surgery.  I had already private privately via my osteopath for XRays in Darlington. (I lived in Kendal)  I took these with me to the appointment and he looked at them and told me that I had spinal stenosis, thats where your bones disintegrate eventually.  I waited and waited for this op and after 12 months I received a telephone call from the surgeon to say, "What did I say when I saw you" etc (apparently I found out afterwards that all paperwork went to India - I don't know whether to be filed or what but they had forgotten me. So I went back to Preston (can't remember his name anyway he doesn;t work there now)  He told me that he had two options, to do a "Inspace" or Xstop.  He said go away, as I was a researcher and research. and I will see you with an appointment. So I did. I also found out that Peek the plastic they used for some ops for the bone are actually made in Fleetwood.

      These two were widgets which jacked up your spine so they didn't drop down on the ones below basically.  There wasn't much to them really and I spoke to both reps and the rep for X Stop still works for the same firm but I understand that they haven't been very successful - this is to say perhaps the surgeon hasn't been trained properly or they have met something along the way. However, the company no longer make X Stop and I haven't a clue whether they still do Inspace.  X Stop has been stopped now being made - I think that being in America there are more people and so they get plenty of practice, but....... it has been said even the most experienced surgeon is no longer using it.  Inspace I don't know whats happened to that, but it was basically the same.  The rep for X Stop is now a friend, who lives in Valencia.  The Inspace rep said to me that they have to be in the theatre when they insert it.  Guess what I had, yes Inspace.  Within weeks I was in pain. I came to Spain and was just so much in pain I wanted to go home. Even getting on the plane was an effort.  Whilst here, I dropped the flipping lead of the TENS machine down a not very nice toilet. ha ha..  So went to "a probably quite famous" but dealt with insurance patients but had a whopping cortisone injection which in fact kept me going.

      It was the time when you could go to any surgeon and i research quite well - I thought and went to see someone in Teeside. What a joke. He gave me more XRays and MRIs (my memory is going cos I take Lyrica) 

      it took a whole day.  Why is it that you go to a surgeon and they tell you about themselves and don't get on with the job.  Passing this comment, the Registrar read the X Rays etc.  I saw the surgeon (who is not there either) and he said there was nothing wrong with my back. Honestly. I was absolutely devasted what was the pain?

      Eventually I went back to Mr Shackleford - he is not in my good books either, I went down to Warrington Spire Hospital privately. and he did decompression on 2 levels L3/4 and L4/5.

      I paid £7,000 for that op and I had to ring him up 2 months later to say I was stil in pain. So I went back to him and he said - its usual to have pain after surgeon well I knew that but it wasn't that sort of pain. So that was that. Then as I was coming here permanently I asked for my records back to my back - they got that all wrong to.

      When I got to spain to register as a resident, I stood in that q and believe it I could have killed people, luckily the 3rd day I stood we made friends with someone and chatted.   I am back now where I was in England. Going through the cortisone injections, pills etc. and I am really fed up. The last thing was I went to Valencia and saw Dr March and he said that if he operated it would be dangerous and that was that. But..... the appointment before us was a bit scarey and I think that that got him on the bad side.  They have to have security guards on each floor, I was suprised.

      So I am back in Gandia seeing the same flipping surgeons (general orthopaedic) for another cortisone.  I have a woman now don't know her name but speaks English v well.  Dr March put us in our place by not knowing Valencia/Spanish very well.  I think she may be doing a (what the injection in the spine with cortisone) I had that in Preston so I go back to square one.  Or they might do a pain machine inside once they know where the pain is coming from.  So next week I go to see her. sometimes it takes me all my time to listen I am so annoyed but know that if its spinal stenosis you can't do much, like ADR (artificial disc replacement) that is how I got to know Alastair on the internet. He has the same problem as us but runs the forum ADRSupportUK.  Trouble is, people tell their troubles on the forum and when they get well, they are so pleased they don't come back and tell people. Its like recommending a bed you just have bought and asking me how its doing - you would say good wouldn't you. People down the line don't explain how they have got on, or tell their story.

      Hope you got all that - so you can look up Mr Shackleford. He sat and talked to me about his bloody daughter and how many private patients he had and going on holiday golfing. That annoyed me to especially as I was paying for the appointment.

      Well thats it - had a fruit tea instead of a cider vinigar just now.

      I tell you what though, since taking Lyrica my memory has gone downhill, stupid names of things its really annoying.  Side effect so I will mention no more Lyrica.

      Thats the downside, as soon as I came here I was sent for a bone scan and it was nothing like the on in the UK - so I have had drinks to make my bones better.  

      I forgot to tell you in amongst this that I consulted 2 surgeons here privately too. Both of them said fusion, with rods and screws. This is what Dr March is saying its dangerous.  Don't know why, he wanted us out of theway for the next patient.

      Here endeth my story..... Anne

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