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Spinal stenosis help

stephaniew93stephaniew93 Member Posts: 4 Listener
edited October 2019 in Disabled people
Hello, 

im writing on behalf of my mum who has spinal stenosis- we are from Scotland but have been recommended to check this forum out. 

She has been advised by pain nurse to cut cocodomal pain killers which in turn help her best. She is a 25 hour carer in the community and her job is by no means easy bathing up to 5 people a day- there is no task deemed easy by her work so she is struggling really bad at the moment. 

I am wondering if anyone has had any relief from other treatments other than tablets, I feel things are getting worse, and she is only 59 years old so doesn’t qualify for early retirement and we have been told she wouldn’t qualify for benefits?!

Thanks. 

Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,680 Disability Gamechanger
    Hi @stephaniew93 and a very warm welcome to the community!

    I'm sorry to hear your mum is in a lot of pain, how is she doing at the moment?

    I was wondering if she has had reasonable adjustment at work? I appreciate this may be difficult due to the nature of her job.
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  • CACCAC Member Posts: 5 Connected
    Hi, I am so sorry to hear of your mother's pain.  I had spinal stenosis and the only real relief I got was having a laminectomy with fusion and instrumentation and even then I get odd stabbing pain and it seems to change every few months into another type of pain to overcome.  Not serious pain, but just annoying in the main.  I was unlucky and was one of the 25% who, even though the op was a success, are left unable to stand and walk for long.  The surgeons' do not know why this happens or how to overcome it, so I am now disabled and housebound.  My best guess is that I know I have little or no padding between my vertebrae and I also have nerve damage from the bone growing inwards to strangle my spinal nerve, so am not going to get any better.  Otherwise it is painkillers. I currently find one ibuprofen will sort me out.  I have a wonderful chiropractor who stretches my back once a month and keeps me as mobile as I can be.  I agree that co-codamol are the only ones that work for this when you have bad stenosis pain.  I wish your mother well and hope that she can get an appointment with a spinal consultant who will be able to help her.  
  • stephaniew93stephaniew93 Member Posts: 4 Listener
    @Chloe_Scope helllo, she is getting by as best as she can- unfortunately her job there is no light duties , some days she is good some days not great. She attends a pain clinic and they have given her a tens machine which gives some relief but not enough. 

    @CAC I’m sorry to hear of your situation ☹️ My mum seen a spinal orthopaedic consultant last year where he managed to diagnose the spinal stenosis after 4 years of being told “general back pain, loose weight” & the tingling was a side effect of her stroke from 20 years ago. He did mention surgery but said my mum was not a good candidate and wouldn’t recommend. It’s good to hear you find benefit from chiropractor - I have been saying to her for a while to try one but she isn’t convinced I will let her know someone with her condition goes and sees good in it. 
  • BlutoBluto Member Posts: 5 Listener
    Hey Steph, totally understand where your at here, hard to know which way to go or who to turn to , before I comment is your mum suffering Thoracic or Lumbar region Stenosis?
     
  • Chloe_ScopeChloe_Scope Scope Posts: 10,680 Disability Gamechanger
    Hi @stephaniew93, thank you for sharing this with us and I am sorry to hear the pain clinic wasn't as helpful as you had hoped. How are you both getting on today?
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  • Sherlock20Sherlock20 Member Posts: 5 Listener
    I I have spinal stenosis. I have had injections in my lower spine, and a Caudal Epidural. They have given a bit of relief for a few months but I am waiting for another appointment as I get a lot of back pain and muscle spasms. I have Gabapentin tablets and psi patches.  
  • Sherlock20Sherlock20 Member Posts: 5 Listener
  • stephaniew93stephaniew93 Member Posts: 4 Listener
    @Bluto lumbar stenosis- affecting her lower back and legs. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,680 Disability Gamechanger
    Hi @Sherlock20 and a warm welcome to the community! Sorry to hear you are getting a lot of back pain and that the relief was only temporary. When was your next appointment?
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  • stephaniew93stephaniew93 Member Posts: 4 Listener
    @Sherlock20 hello, my mum has never really had management options discussed - she attends the pain clinic where treatment is through physio (useless) and a tens machine. She also takes Gabapentin & Paracetamol. She uses the pain patched but doesn’t find any benefit with these. She too suffers spasms , cramps at night and numbness and tingling. 
  • Sherlock20Sherlock20 Member Posts: 5 Listener
    U last went Nov 18 and was advised I would get an appointment in 6 months. I didn’t hear anything so I rang but was told it had changed and I should have rang them. I have seen the doctor and have to be referred again. I have been told there is no cure but inject an give relief for a period of time. 
  • Sherlock20Sherlock20 Member Posts: 5 Listener
    My new appointment is 21 November I will ask to be put on the list for more injections. 
  • Sherlock20Sherlock20 Member Posts: 5 Listener
    Stephanie, get your mum to ask if she can have injections. It is quick and doesn’t hurt. I would recommend it. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,680 Disability Gamechanger
    I hope the appointment goes okay @Sherlock20! Please do let us know. :)
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  • Meredith46Meredith46 Member Posts: 12 Connected
    I too suffer spinel stenosis had operstion 15 years ago now spines gone again been waiting months to see consultant painkillers dont seem to work new t o this site hope some one can give advise
  • CACCAC Member Posts: 5 Connected
    Hi, @Meredith46 , I am so sorry to hear that.  What operation did you have?  I had a laminectomy with fusion and instrumentation at L4 for pain in both legs in August '16.  My left leg is not bad now, my right has never really recovered, but it was much worse to begin with.  Unfortunately I am one of the 25% who have trouble standing and walking, even though we should be ok and the doctors don't know why.  I think it is the worn discs, general arthritis, damaged nerves and the fact my back muscle never really recovered from the op.  I found I had to pay, was the quickest way.  Do you belong to Benenden?  We've been members for decades, as my husband was in the Civil Service and it used to be Civil Service only.  Costs about £10 a month and they've paid for several consultations and ops for me when NHS wouldn't help or kept me waiting forever.  They paid for me to see a spinal consultant, have an MRI, see the consultant again and then I was on my own, but by then we were well on the road to the op on the NHS. My GP told me I'd never get an appointment in the first place for that one, so we had no option.
  • Meredith46Meredith46 Member Posts: 12 Connected
    Had infusion of the spine but was left with scaring pain and arthritis but now another part of my spine has gone had injections in past but no good pain clinic said they couldnt do any more for me had xrays and mri but it shows need new hip too so in agony with back pain and legs which effect my walking long wait to see a consultant 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,680 Disability Gamechanger
    Hi @Meredith46, I'm so sorry to hear this, it sounds like things are really tough at the moment. I really hope you don't have to wait too long to see a consultant!
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  • Meredith46Meredith46 Member Posts: 12 Connected
    Thank you to all who tried to help
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