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Spinal Pain - Carers

Posted , 5 users are following.

khi
khi

Hi, My husband has had 5 years worth of worsening pain due to an incident at work and he needed quick spinal op which didn't work and nor did the next one 18 months later.  Just really any suggestions of what us helpers/carers can do to help.  His level of activity has dropped now as at the weekends he has to rest to get over the weeks work.  He has just been referred to neurosurgeon and I hope they can help but if they can't I don't know where we will turn to next.  Has anyone been in extreme pain for this long, he is on 5 different tablets for pain and even they are not keeping it under control anymore.  Any suggestions or comments would be most welcome.  Thanks

1 like, 6 replies

6 Replies

  • dawnylou68
    dawnylou68 khi

    Posted

    hi there

    i have been in pain on and of for 18 yrs. However last two years it has been constant and never ending!

    I had a DISCETOMY in April 2013, however by July when I tried to ret to work it didn't work out as I was in agony. It took from the July -nov to convince my GP to refer me bl to the consultant/surgeon and an MRI showed a cust on spine and swelling both side of spine around op site. I tried the 100 days antibiotics trial and that didn't work either . I then had a PLIF and removal of cyst in July this year. I had a check up a few weeks later and all lolled ok. I'm not due another check till Mar2015 . This is to allow the bone grafts to take etc and rods to settle in. I. Due to try a phased return to work In Just over two weeks yet I can hardly move in the  mornings until lunchtime and I'm never without pain. I'm on Tramadol 100mg 4 times daily it eases it but that's it.

  • beverley82498
    beverley82498 khi

    Posted

    Hi,I do feel for you.My husband had a discectomy in 2008.He still had some residual pain but was ok.In 2010 the same discs L4/5 went again,however,this time it was classed as Cauda Equina and he was operated on as an emergency.It resulted in major nerve damage in his leg and foot.The neurosurgeon said it was the biggest disc bulge he'd ever seen.As a consequence he was in tremendous pain,pins and needles,leg and foot burning and excruciating if touched.We had months of him feeling really Ill.He had steroid injections,root nerve block,pulsated denervation.nothing worked.Finally classed as "Failed back operation syndrome".He was running his business from home but it was a terrible struggle.He was on Oxycodone and Oxynorm drugged up to the eyeballs Gabapentin & various other meds.It was a nightmare.It eventually led to him being hospitalised with respiratory suppression,he virtually stopped breathing!The GP managed a gradual reduction and with the help of a pain management clinic,he came off the Oxys and went onto Tapentadol a new drug for neuropathic pain.It is not as effective but has far less side effects than the Oxys (withdrawal from these was a horrible experience).The GP arranged a review of meds and referred him to the local pain management clinic which he attended for 8 weeks.He was given Lidocaine patches which can help a bit but it also taught him. How to deal with his pain.He has tried every painkiller going and is on max dose of Gabapentin etc but has finally come to the conclusion that scs is the last resort.He is 59 and we both agreed that if he is to see 60 ,then he needed to give it a try.We took the huge decision to close the business throw ourselves at the mercy of the NHS.He has just been accepted for trial at Leeds St James Hospital.We live in Cheshire,so it's a big commitment for us but we have no option.Not knowing what exactly is wrong with your hubby,I would advise you to go to your GP & ask to be referred to a pain management consultant.He can then determine how you go forward.I know how desperate you feel when you can't do anything to ease his pain and it sometimes feels like you are the only ones going through this long painful journey.You are not alone😊Don't be afraid to ask Dr for help.It took me 4 years to admit I was depressed and I have low dose happy pills to help me.Don't despair,sometimes you have to make a noise to be heard.If you don't ask,you don't get.Hugs to you & hubby.So hope you get the help you deserve.
    • khi
      khi beverley82498

      Posted

      Thanks Beverley, that is so kind, it does help to know that there are others out there going through the same. My husband is on tramadol, dihydracoedine, amtriptyline and diazapan along with the normal paracetamol etc.  I think we have now realised that the revision surgery is not going to help and that it quite hard as we kept pinning our hopes on the next surgery will take all the pain away.  At least now we have been referred to pain and neuro specialists so with any luck we can concentrate on controlling the pain than removing it as that ship has sailed.  My husband is 43 and had the accident 5 years ago and we can't afford for him to give up work so he does need some help to keep going, the accident, through their negilience, happened at work but we didn't receive any comp that we hoped we would so he could retire, I think they realised it would be such a big claim they threw everything at it.  I just want him to be able to be in a bearable amount of pain rather than being sick and constant pain.  I so hope that your hubby gets the results he is looking for and the treatment come quickly for him but also for you, it is so tough seeing someone you love in pain everyday.  Good luck to you both.
    • beverley82498
      beverley82498 khi

      Posted

      It's awful for both of you.We had to face facts that he won't get better.We sold my car & had a stairlift put in.He was very much against it but I told him it would help me,He was sleeping downstairs in a recliner for months but he is now able to sleep in our bed!We altered the shower and bought a mobility scooter that fits in the boot.He hated this as well but it's the only way we can have any kind of life.Our GP told us to claim disability living allowance.Don't know if your hubby is getting this but it's not means tested.My hubby qualified as he can't stand up for long enough to make a meal!Can't walk more than abt 50 yards.He qualified for the mobility part at the higher rate.It makes a big difference,we chose to use it towards a motobility car.We have just had a Ford galaxy,that the scooter fits in fine & he can lie down if we have to make a journey longer than 1 1/2 hours.You can use it to pay for anything that makes your lives easier.You are not being scroungers by claiming it,you've paid your taxes.The pain management programme is very useful as he will meet people in the same situation as him.My hubby went 1 afternoon a week for 8 weeks and despite thinking it would be a waste of time,it was very useful.You see a pain consultant first,he will totally review his meds,maybe prescribe something different .In our case,a brand new drug.They will also tackle the depression which goes with chronic pain.They tried different sorts of anti depressants (much to his disgust) but they really help.It is not whimpy to have help!We have gone from deep despair to facing reality.It's not easy but you'll be amazed how much help is there if you ask.Pain patches,drugs try anything they offer.Try and avoid Oxycodone,it's a nasty addictive drug,3 times the strength of morphine.My hubby was offered the Medtronic scs after the last op but as hubby found Tens machine just aggravated things,also physio & hydro therapies he refused.We only found out about the Nevro stim after reading an article in the paper.No buzzing!We went back to our GP who was prepared to fight for funding.The implant costs £33k !It is a last resort but we are prepared to try.Scared about driving fro cheshire to Leeds but it has to be done.Hopefully your hubby may e able to get some relief with different meds.It's shocking that this resulted from an accident at work.Have you spoken to citizen's advice bureau?They have a wealth of info,I'm sure they could point you in the right direction.It's unacceptable to cause serious,life changing harm to someone and not pay for it.We are lucky,we've paid our mortgage off.You should not be at a disadvantage through their neglect.Pease take some advice.Sending you big hugs.You will get through this.Bev
  • gracesam
    gracesam khi

    Posted

    really interested to read this and sorry for your struggles.  I am in the same boat as my husband injured his back/neck about 10 months ago and has been struggling with the worsening pain ever since.  At first he was treated for whiplash type injury (anti inflammatories and OTC painkillers) however since then his symptoms have worsened considerably with constant pain, pins and needles in hands and feet, fatigue, flu-like symptoms (no energy, sore legs, hard to keep warm).  He has attended chiorpracter and physio all to no avail so eventually went private for a MRI.  Thankfully (???) this has showed up nothing but normal wear and tear and having privately seen a spinal consultant he assured him that there is nothing to fix and nothing we can do.  We are now waiting 18 weeks for a appt with the pain clinic which might sort out pain but what about the other symptoms??? GP says any nerve damage would have been picked up by MRI.  He is struggling to hold on to his job as a self employed lorry driver.... any advice... should he be seeing a neurologist??? he is at present on antidepressants (Zoloft) for pain and also Lyrica all of which hasnt helped yet!!!! 
  • sheila68761
    sheila68761 khi

    Posted

    I have had chronic pain for 20 years but will not have the spinal fusion the doctors say I need. I found the best thing to control and stop the pain is a TENS machine. No drugs involved just a TENS machine. Unfortunately I cannot use mine anymore because I have a pace maker but you must get one. They really help.

    Sheila

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