Hi, my name is Michelle16! I've been diagnosed with Spinal Stenosis, and am in pain. Anyone else? — Scope | Disability forum
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Hi, my name is Michelle16! I've been diagnosed with Spinal Stenosis, and am in pain. Anyone else?

Michelle16
Michelle16 Member Posts: 4 Listener
After suffering on and off with bad backs for years 2020 was a nightmare, I had Bursitis , first on the right and then the left then ended up with sciatica on the left side, have never felt such excruciating pain , couldn't walk ended up having to use crutches , my GP was very good and referred me to the hospital but as covid was doing the rounds I had a telephone consultation and an appointment was made for an MRI. Luckily my GP had the results and informed me I had Spinal Stenosis and needed to be under the hosipital. I received a hospital appointment which was cancelled then another which should have been this month but was cancelled , both were due to the covid virus , which I totally understand. I try to go for a walk everyday , some days easier than others but always gradually bending forward and in pain by the time I return home. My left leg always seems to be the problem although I have a trapped nerve on the right. Sorry if I have rambled on ,just feel relieved to know I am not on my own.
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Comments

  • janer1967
    janer1967 Member Posts: 15,297 Disability Gamechanger
    Hi and welcome sorry you are in such pain and your appt are being cancelled 

    Have you been prescribed any pain relief 

    Dont apologise for rambling that's what we are here for to support where we can 

    You are not alone on here we do have pain management section you may find helpful 

    Feel free to join in or ask any questions 
  • Michelle16
    Michelle16 Member Posts: 4 Listener
    Hi, thank you for replying , I wasn't sure if I had posted correctly. I will look at the pain management section as I am sure that will be a great help
  • janer1967
    janer1967 Member Posts: 15,297 Disability Gamechanger
    No problem look forward to seeing you around the site 
  • Tori_Scope
    Tori_Scope Posts: 8,262

    Scope community team

    Hi @Michelle16 :) Welcome to the community. I'm sorry to hear that you've been in so much pain.

    As Janer1967 said, there's absolutely no need to apologise. You're welcome to share your experiences and vent here whenever you need to. You're certainly not alone.

    You can see the full list of categories of discussion we facilitate on the community here. This is the dealing with chronic pain category, which I've now moved your post into so that other members can find it more easily. I've also renamed your post slightly to make it more obvious what you've posted about. 

    Fingers crossed you'll get a hospital appointment soon. Make sure you chase them if you don't hear anything back! 
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  • tonyt
    tonyt Member Posts: 7 Listener
    edited August 2021
    Hi my name is tonyt i suffered for years with back pain that goes into my left leg.
    I was previously told many years i had arthritis in my back, painkillers was all they could offer.
    Never liked taking them to be honest.
    I have been really suffering for last 12months i went back to the doc the pain was very similar to when i needed to an hernia op 5years ago and i wondered if something had gone wrong with the repair.
    The doc was helpful sent me a ultra sound which was ok so he sent me to see a physio.
    Due covid i got a telephone consultation he explained why the dont bother with xrays but after further discussion he agreed to see me face to face he examed me listened attentively.
    By this time my mental health was struggling.
    Then after years and years of pain he told me it was spinal stenosis.
    I had never heard of it before but i left with a clarity still in pain but without the fear he give me some advice but told me honestly there is not alot that can be done till it gets so bad you need an op.
    After doing some research i have to agree with what he said however i also came to a surprising conclusion, i may of put 2 and 2 together to get 5.
    But bare with me.
    At this point i am thinking at some point in the future i will have to stop working whats my options.
    Spinal stenosis is on of the few back complaints you can claim benefits.
    But you need to have a confirmed diagnosis using a mri scan,
    As i said doctors are not sending people for xrays or mri scans for back pain they argue the majority of people over 50 have sdime degree of arthritis.

    I did discuss this with doctor i also decided painkillers are pointless for spinal stenosis if you are trying to continue to work, the pain comes on fast when you walk and goes when you rest.
    Leaning forward and resting just before the pain starts means i can continue to take dog out for exercise.
    Also riding a bike is good exercise it does not cause any pain i thinking about an ebike as i am not a keen cyclists.
    It has greatly improved my mood and how i feel in myself.
    I will leave my story there for now after another visit to doc and another physio i am waiting for an appointment for mri scan
  • tonyt
    tonyt Member Posts: 7 Listener
    edited August 2021
    I will not be able to work and take painkillers.
    So its bout getting the balance between working and quality leisure time.
    If only half the day is good should i waste it working.
  • Michelle16
    Michelle16 Member Posts: 4 Listener
    Tonyt, thank you,
     I have now been told I also have a bulging disc as well as the Stonosis, agree the resting as soon as the pain starts does help, I am now retired so tend to plan what I do on how I feel on a day to day basis. I walk the dog daily and now use a walking stick as find that helps to have something to lean on when I have to stop.
    It can be so frustrating as I have always been active and now limited to what I can do.
  • tonyt
    tonyt Member Posts: 7 Listener
    Update, after the physio sent me for an mri scan she told i have a bulging disc pressing on a nerve, she paassed my results onto a spinal surgeon i seen him we discussed surgery i have to  admit i was shocked how bad the condition of my spine looked, but decided i am not ready for such a drastic solution.
    He said he could remove the disc and screw L4 and L5 together using a cage and some rods, 3 to 12 months to fully recover.
    But he also said my symptoms pain around top of my leg and in groin were not common to nerve pressure from this area.
    The pain is getting worse though  i have managed to improve my mental state i started the gym but recently have only managed to at weekends because i am ok in the mornings
  • Alex_Scope
    Alex_Scope Posts: 2,573

    Scope community team

    Hi @tonyt thanks for updating us. I'm sorry to hear that the pain is getting worse, but glad to hear that you've been feeling a bit better mentally as well. I think you're doing a brilliant job managing to go to the gym on weekends. It takes a lot of determination to form a good habit!

    Not being a medical professional I wouldn't want to speculate on the cause of the pain around the top of your leg and groin, but are you getting supported to manage that pain as well as your back pain? 

    Have you talked to any friends or loved ones about your feelings around surgery? I understand it can feel pretty daunting. Do you feel that the alternatives to surgery would help to resolve the pain you're feeling well enough? 
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  • Alex_Scope
    Alex_Scope Posts: 2,573

    Scope community team

    Thanks also for your update @Michelle16, I'm glad to hear you are using a stick to assist you with your daily walks. It can feel limiting, but it's positive to see you are open to using aids to maintain your independence. That can be a very long journey to go through! What's your stick like, is it a nice colour?
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  • Mrscinq
    Mrscinq Member Posts: 5 Listener
    Hi @Michelle16 I also have stenosis, mines cervical spine so my pain is in my arms and neck but I know how scary having discectomies can be.  Ive had L5 removed as well as c6/7.  The back pain I had before they removed L5 was debilitating but I was riding a bike 3 weeks after the surgery so I have to say it was a godsend.  Mine wasnt a laminectomy tho, just removal of the bulging disc.  I do get a bit of pain in my lower back from the surgery (16 years on) but it is no where near as bad as the sciatic pain and nerve pain I was experiencing from the pesky disc.


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