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multi level fusion now pain above!!

she11uksshe11uk Posts: 5
edited 08/25/2013 - 11:41 AM in Back Surgery and Neck Surgery
Hi All, hoping for some advice or maybe reassurance not sure which!!!!!

Nerve Root block and Facet joint injections 2010
Epidural 2010
L4/L5, L5/S1 Multi level spinal fusion with instramentation and disc replacement and nerve decompression. 2011
Revision surgery 2011 where had spinal fluid leak and put on bedrest for month.

Had back pain but managable with pain meds since. Had swelling above fusion site in March this year and mri in april showed that had a slight tilt in vertebrea above fusion site but nothing major to worry about was controlled by pain meds and being put off sick from work.

I had just returned to work when In May this year I was involved in car accident where i was hit from behind, since then i have been in agony in my back, loss of feeling in legs and heels of foot. I have attended A&E due to loss of bowel function and was just sent home with no MRI just a quick examination and told to go home or stay sat up in the chair all night (they had no beds!) and they will talk about me in the morning but i would still not be scanned or xrayed to see if anything was wrong!!!!!! Went o see my GP day after and he was disgusted that they did not scan me because of the risk of cauda equina. He immediately wrote to my surgeon.

I had facet joint injections in July and they have not helped at all in fact i am in worse pain than before. Pain has become so bad that i have been taking Morphine near enough daily recently as well as tramadol, co-codamol, ibuprofen, amityriptaline and diazepam.( excuse my spellings of meds). Saw my physio on Monday and he says i have lost all muscle tone in back,bum and tum. Saw my surgeon and he has ordered an MRI for next week and i am worried that nothing is going to show up...I know somethings not right and i am not making up this pain..

Has anyone else had anything like this? Can loss of muscle tone cause so much pain?

Thanks very much in advance x

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  • I am in the UK too, so understand having to wait for tests etc.

    You have been having a rough time and I am so sorry that things seem to have been made worse by this accident.
    I wish you luck for your MRI scan next week. Are they going to use contrast dye as you have had a fusion and have hardware implanted? I had an MRI scan done after my latest fusion and had this contrast to make the images clearer as the titanium metal, although MRI friendly, can distort the images.

    I am not a doctor, but I don't think that it is your loss of muscle tone that is causing so much pain. Rather that something that is causing your pain is also causing loss of muscle tone.

    I hope that they will find out what is going on soon and that they will be able to help you get out of this pain.
    Please do come back and let us know how you get on.

  • she11uksshe11uk Posts: 5
    edited 08/31/2013 - 4:44 AM
    Thanks for your reply, had my MRI today and no contrast dye was used just the normal MRI. Typical though but am actually having a reasonably good day today which is sods law!

    Had a slip on Friday night though where i was trying to get round my dog and slipped on some grease and jolted myself again and have had the worst migraine i have had in ages since then, dont know if its related to my back or just because im getting so stressed by all the things associated with being off work and the fact i think they are going to sack me on capabilities grounds ( basically started with company 4th march, in hospital 5th march and off until may, went back for 3 weeks, had car accident and have been off since!!!). They have now asked for access to my medical records which i have granted them since the day i started with the firm and nothing before, which i am thinking is a sign that something is on the cards after speaking to ACAS.

    Just praying that something shows on MRI now cus this is beyond a joke being in so much pain all the time. I normally just get on with it but can feel myself getting lower and lower as the time is going on.

    Will update after thursday!

  • I can definately understand how stress can make pain worse.
    I was having problems with my boss at work despite having a very good sickness record apart from time off for spinal surgeries. I had worked there for 12 years and in the end the stress was so bad that I gave in my notice. I think that is what she had intended. Now, after a few months and having got over the stress of the injustice I felt, I am actually feeling better.

    I do hope that they will see why you are experiencing so much pain and that they will be able to help you.

    I will look out for how you get on when I get back from my holiday in a couple of weeks. Good luck :-)

  • she11uksshe11uk Posts: 5
    edited 09/05/2013 - 11:29 AM
    Hi Jellyhall

    I hope u are enjoying ur holidays?

    Just thought i would update you as you were so kind to reply to me. I have seen surgeon today and have been told that the cage in fusion has moved and is compressing the nerve, the joint above is buggered and is severely arthiritic so I am being operated on next Thursday :( He is hoping he isnt going to have to fuse l3/l4 and is gonna try everything he can to avoid it so will wait and see what happens!

    Least i know what is wrong and i am not going mad!!!! Woo hooo!!!! Did hit me like a ton of bricks though.


  • Wow that was quick for the NHS!
    You will be on the recovery side of surgery now and I hope that it all went to the surgeon's plan.
    Hopefully you will be home again now and underway in your healing.

    How are you doing? Once you are able to be comfortable posting here, I think you will find the support from others who have walked this path to be very helpful.

    Take care and follow all the rules you have been given.
    I hope that you have some help at home.
    :-) xx
  • she11uksshe11uk Posts: 5
    edited 09/27/2013 - 12:39 AM
    Thanks again for you reply.
    Ops all done...1 redone fusion at L5/S1, DIAM stabilisation at l3/l4, nerve decompression at L5/S1 and CSF leak all patched!
    I agree was really quick for NHS, I am really lucky that i have good relationship with surgeon and he knows my pain threshold and after he saw me knew it wasnt just me being mental so juggled his theatre list about! His exact words to me were " I will do everything i can to keep you out of a wheel chair"!!!!!! Kind of scary stuff now i think about it!!!

    Was in hospital for 3 days but then on bedrest when i got home for about a week as kept getting spinal headaches but was adament i wasnt staying on the ward any longer than i needed to, it wasnt the best i have known to be honest, and there is nothing like your own bed is there!

    The back feels alot better,had a bit of swelling but thats to be expected but the nerve and muscle pain in left leg is the killer at the moment....could quite easily chop my leg off but hopefully it wont last that much longer.

    I did end up losing my job because of all this but to be honest now i feel relieved that i no longer have to worry about rushing back to work and can take my time and recover properly and not put pressure on myself to rush things..just the benefit system to negotiate now!! My boyfriend ended up losing his job in construction because of the time he had to take off with me so its been fun!

    These things are sent to try us eh!

    Anyway enough of the rambling on! Hope you had a fantastic holiday, take care
    :) x
  • jellyhalljjellyhall Posts: 4,373
    edited 09/30/2013 - 5:44 AM

    It is good to hear from you again. :-)
    I am very sorry to hear that you had a CSF leak, but good that it was patched and hopefully is fully healed now.
    Your problems were obviously severe and hopefully your surgeon has done all that is needed to get you out of pain and trouble. I also had problems with my left leg after my L4/5 fusion. It was very weak and I could hardly pick it up. It did all solve itself with time though, so I hope that you will find the same thing. I think nerves are very fussy about being disturbed and moved about!

    I am sorry that both you and your boyfriend have both lost your jobs due to your back problems.
    I hope that you will have an excellent recovery and will be able to find another job that you will enjoy and will look back and feel that it is better than the one that you lost.

    We had a wonderful holiday in Minorca and came home feeling very relaxed. :-)

    My advice to you now would be to follow all restrictions that you have been given. Don't be fooled, when you feel better, to think that you are ready to get back to your usual lifting, twisting and bending. You won't be!! I was told to wait until 3 months and even longer to do any heavy stuff. There are so many people who do overdo it too early on and live to regret it and some even need another surgery.

    Do keep us updated on how you are doing.

  • Hi Jellyhall, a long time since i updated but things have not been very plain sailing. I have had various major flair ups over the last few months and also suffered from what they thought was claudia equina but luckily it wasnt it was just one of the symptoms of it. I had a very bad flair up in december and an emergency mri and was told all was fine but that i had a badly inflammed nerve that will be treated by the pain management team with the view of having a spinal cord stimulator put in..Over the last few months pain has got bad again and tablets have increased to me taking morphine again daily (slow release) and oramorph 4 hourly...great eh! I was admitted to hospital last weekend with severe swelling after the emergency doc thought was an infection but after being kept in over night the swelling has subsided and was just told to go home with no explanation as to why it had happened. While i was there though i had a sneaky peak at my notes only to find out that the mri i had done in december the diam stabilisation protuding into my spinal canal and spinal stenosis left l5 neural forminal....doesnt sound all fine to me!!!! Went to docs as apparently they have more clot to get me referred to pain clinic quicker and he is baffled why i wasnt told about december mri results....im so angry and dont know what to do next? I have always had the greatest respect for my surgeon but this has made me doubt him. I have now lost my partner due to the back problems as well as other things and have been diagnosed with severe depression...i just feel everything is going from bad to worse..I am in a wheelchair now every time i go out and am using double crutches just to walk small distances, cant drive and feel so iscolated..sorry to rant but as you know sometimes you just need to get it off your chest :-(
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