Failed back surgery syndrome

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  • #23781
    DavidWirral
    Participant

    Hi everyone,
    Has anybody got an experience about living or dealing with this condition? I have suffered with chronic pain since having a micro discectomy, discitis, spinal fusion, removal of infected hardware. I was admitted to hospital on Monday with chronic agonising pain. At first the hospital was concerned that Ihad a spinal abcess luckily the MRI was clear. My consultant then told me it was failed back surgery and I was to just deal with it. I am so upset by this response I have done everything that has been asked of me to ensure a successful outcome and to be now given this label had really upset me. I do not understand fully what it means. I am left devastated as i desperately want to get well. If anyone could give me any help it would be really appreciated. My medication is giving me no relief even though i take a huge amount of medication every day. I have no idea how to manage my health moving forward.

    #23782
    fionamwylie
    Participant

    David – I am SO sorry to hear of this. Sadly, I can only offer you all my sympathy and little advice. I wish I could. My only advice would be to get a second opinion? And battle on? That’s all we can do.. Don’t take one Dr’s opinion. That would be my advice. I am determined to get a diagnosis and help – like you I am on masses of medication (175mcg Fentanyl daily) confined to my bed, aged 37, with no husband, boyfriend, children – or even home.. and no diagnosis and no Dr’s caring. I am currently just staying at a friend’s as I’m unable to cope alone. I wish you ALL the best. Keep on fighting. I know it’s hard. And that’s an understatement.

    #23783
    Laura
    Participant

    Hi David,

    Sorry to hear you’ve been diagnosed with this… a few of us on this site have been through unsuccessful spine ops and as far as I was told it means the operations didn’t work as intended (in my case spinal stabilisation, fusion and removal of hardware) and have left you with nerve damage ( in my case back and legs) .

    I don’t think you could have done anything to change the outcome of the operations you had and neither could I. It’s not much help when doctors just say you have to learn to live with it though. Have you thought about trying a SCS at all? I’ve tried that but it didn’t help my pain unfortunately but it was worth a try. I’ve had to give up all medication except for amitriptyline as none of it worked and it made me very unwell. Why not explain to your GP or pain clinic how you’re feeling with this diagnosis?

    Do hope you get some help with this, I certainly understand where you’re coming from.

    Laura x

    #23784
    Scoob
    Participant

    Hi David I also have failed back surgery syndrome. I wasn’t satisfied with that diagnosis so did my own research and suspected i had Arachnoiditis so i went back to question my spine surgeon who incredibly admitted that yes i did indeed have Arachnoiditis! It can be caused by surgical procedures (they don’t tell you that before the op!) so they’re less than keen to admit to their mistakes!
    On top of that i have an abundance of scar tissue, some of it compressing a nerve but its too dangerous for any further surgery.

    #23785
    Laura
    Participant

    Hi Scoob,

    That’s interesting about arachnoidistis … I had the hardware taken out of my spine in 2011 because of inflammation problems plus a large number of cysts. I’ve done lots of research too, it’s funny how some doctors don’t want to give a name to a problem.

    Scar tissue has caused me lots of leg pain unfortunately and I would never have another op in the same place as was told it’s only safe to have one op in one place otherwise scar tissue will cause problems… needless to say it was another surgeon who told me this!

    #23786
    Socket
    Participant

    I have failed back surgery syndrome which made me an ideal candidate for a Nevro Senza spinal cord stimulator. It works at a much higher frequency than other SCSs and early indications are that because of this, and its much higher pulse rate, it is more effective. In 2013 I was admitted to hospital by ambulance 3 times to get my pain under control by very brief courses of Ketamine. I had collapsed completely immobile through the pain each time. The last two times were in December and even when I was out of hospital in Dec I was bed bound. In other words I was in a bad way.

    On 02 Jan I had the full implant of the Nevro Senza. A week later I was able to do a ten minute walk and my pain levels had gone from an average of 8 in Dec to around 3. Yesterday I did 2 ten minute and 1 twentyfive minute walks and my pain levels are around 4 to 5 (in other words that was a little too much). I have been out for 2 quick meals in the last month and 3 local visits to shops. Not a ‘normal’ life I know, but so much more than I could manage before, and as a result life is already worth living again.

    I don’t know where my pain levels will settle, it takes 6 months to know, testing out the different programmes, Maybe it it will give me alternate days of a part day out followed by a recovery day, if it does I will be happy. It may give me even more, either way I have to remember it’s not a fix, it helps mask pain signals. I am also on Pregabalin.

    Could this work for you?

    #23787
    Anonymous
    Inactive

    hi i too had two failed back ops so i was sent to another hospital to try to put things right i was bent oer in chronic pain so wen they sai we can help i said ok i had to have three ops one was thro the tummy it went ok i had setbacks due to sickness i never ate for three weeks i just kept beening sick i still had to face the third op all in three weeks i was so weak anyway i came home as soon as i cud as i have been getting over all the ops i have been in agony and my leg keeps giving out i di have few probs with this before it has got so bad they r arrangin a mri they took bloood they said i have iflamation in my body so now i have to wait until the mri result they did say i wud never get rid of the pain i have to take the meds in the day and they make me feel so tired but wen i reest and sleep it does help a little altho i cannot get rid of the pain i have in my leg its horrid i cannot sleep at nite because its so painful so i wait and i will let u know i did ask thereg cud this be nerve pain he said yes so i have to wait my tum is still swollen they said thats ok i said i dont like it most of the op was done thro thetum gummybear

    #23788
    Del123
    Participant

    I’ve had 7 major back ops, have been on massive doses of OxyContin/Oxynorm ect for 18yrs but now affecting mental state, can anyone help me

    The pain in back, down the leg is at it’s worst. It all started 18yrs ago when I had a prolapsed disc op which went wrong. this was followed by a metal Fusion and plastic fibre discs to L3/4/5.
    After tense machine and a dorsal column stimulater which did not work, they decided to fit me with a Synchromed Pump in the stomach and a catheter in the back dripping Dia-Morphine into the Spinal Chord itself.
    Anyway, this worked for 4yrs till the battery in the machine went and to my dismay (at the time) was told they they can’t take it out as it’s too dangerous.
    They then put me on massive dosses of Morphine and 15 other drugs to take on a daily basis.
    So here I am with extreme pain still and mentally affected by all this medication which is not helping much on the pain side. Every Dr/Specialist I’ve seen recently does not want to touch me as they DONT KNOW WHAT TO DO NOW!!
    All they keep saying is that I should carry on taking the pills as this is the best option, surely not? There must be someone out there can help me as I’m at my wits end and Extremely Depressed and walking around like a Zombie ( according to my wife and kids).

    #23789
    DavidWirral
    Participant

    So sorry I have not replied to anyone. I started a 16 day pain management programme two weeks ago, I have had my first one to one with my named clinician and I have been promised a medication review, I am finding the programme helpful with some aspects particularly mindfulness but I must admit I am realky struggling with walking. I have sent a request for my last scans as iam still unhappy with the diagnosis. I am planning to go to see someone privately, all I want is to be talked through my mri scan, have time to ask questions and be treated with respect and not contempt. I am certainly going to be asking some serious questions. Thank you everyone who has posted, your support means a lot x

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