Neurological conditions
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Spinal stenosis

westonwarriorwestonwarrior Member Posts: 4 Listener
edited January 2018 in Neurological conditions
Hi everyone, I am 53 years old with spinal stenosis, I have discs going in the c section of spine but worse is lumbar area. It affects my daily life quite bad but so far the NHS won't do anymore except keep me on medication. It's a daily struggle which has left me suffering clinical depression and insomnia for past 5 years.
Westonwarrior x 

Replies

  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello @westonwarrior and welcome to the community.
    I'm sorry to hear of your obviously painful condition and particularly sorry - though, of course, not surprised - to hear that you are struggling with depression also. Depression, at least, is something I'm an authority on :smile: 
    So, you're among friends here. How might we be able to help?
    Very, very best to you,
    Richard
  • westonwarriorwestonwarrior Member Posts: 4 Listener
    I'm looking for help and advice how long my spinal stenosis is going to go on for, is there a cure for it. I have an 11 yr old son who is not a happy boy because I am so limited to what I can do. The other big question that docs don' answer is will it get worse because they have supplied me with a wheelchair 
    Westonwarrior x 
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @westonwarrior, and welcome to the community! It's great to have you here.

    I'm sorry to hear about your impairments and how they're affecting your life. Do bear in mind that as we're not medical professionals we cannot advise on treatments and cures, and you should always speak to a trained professional about issues or concerns about your condition. 

    However, we do have some other members with spinal stenosis who you might like to chat with, such as @shazza63, @NicolaH and @raedodkinsrudge. Hope this helps!
  • flumpflump Member Posts: 7 Listener
    Hi westonwarrior...i too have spinal stenosis, diagnosed in 2014,i have it in my right-side neck & lumbar.  I don't want to dishearten you but I was told mine will only get worse and never get better. I had a discussion taken out if my neck some 20 years ago which started the ball rolling with my stenosis, I now have a spur bone from the operation touching my spinal cord, this leaves me with numbness in my arms & legs plus tingling. I am in constant pain mostly with my lower back although the neck does give me problems also, I'm on the highest dose of tablets.... Apparently! 
    Do try to do as much as the body will let you, make a bucket list of places you want to visit & things you want to do before you are unable to. 
    I'm new on here but will try to get on here daily for any updates etc
    Also I'm interested in any others with this on what medication they take and any other interesting things they receive from the nhs or disability aids etc. 
    Flump
  • feirfeir Member Posts: 388 Pioneering
    I've been admitted to hospital last year the pain was that bad i couldn't move at all, couldn't stand up or anything. 7months later i'm being booked in for my first of two operations, don't know why you've been left to struggle for 5 years? Maybe you're at a stage where it is too advanced and they can't do anything?

    Are you getting help with the depression? i'm getting help with that too and it is helping.

    It doesn't get better no. There's no cure at this time, all they can do is try to prevent it getting worse. They can try to alleviate numbness and weak limbs as well. Like all operations there are some risks and with it being the spine the ops could make things worse also.
  • Clarkie123Clarkie123 Member Posts: 6 Listener
    Hi ,I have just been diagnosed with spinal stenosis ,and degeneration,think I am still in shock after years of complaining,and pushing I finally received my MRI ,only to be told by nuero surgeon I am to far gone I not only have cirrhosis of liver nafld,also a tumour in my bike duct I am shocked that I have been in so much pain and now having done all the tests they can't do nothing ,my point is I am on pip and ESA and have just had assment as I now have become more weaker, have I done the right thing I sit and stress as I wait ,surley a illness as destroying as stenosis would automatically qualify for enhanced rate anybody else awaiting the dreaded brown envelope xx
  • AngelDeeAngelDee Member Posts: 1 Listener
    Hi everyone I was recently diagnosed with cervical spine stenosis with three places in the neck compressing with spurs and 3 slipped discs in the lower back have been in agony. I’ve been seeing the chiropractor weekly which has greatly eased my symptoms of blurred vision, pins and needles and numbness etc I actually watched this video that was quite useful. Although what he states whatever doctor you go to will be their point of view yes chiropractors are very useful but do remember in some cases surgery is also essential and also pain killers in moderation are also beneficial. Would definitely recommend trying a chiropractor as well. I’m currently on amyltriptiline aswell. https://youtu.be/XwgmzhuTev8
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Welcome to the community @AngelDee, and thanks for sharing your experiences with us!
  • Panda70Panda70 Member Posts: 23 Courageous
    Hi westonwarrior, I begged for MRI as I'd been saying a bout something felt really wrong with my spine n legs, finally got MRI in 2017 to be told I have spinal stenosis, facet joint arthritis in my spine  two protruding discs that are pressing on the spinal canal, had new MRI n xray January this year and they found further deteriation, I've been waiting a year now for nerve branch injections as surgery isn't an option due to my other complex medical problems, I feel your frustration as it does limit what you could previously done and with still having a youngster at home it will be difficult for you both, I struggled badly when I had my one year old grandson over to stay but luckily my partner helped out but I don't have him now, the older ones are good as gold but I can't now take them swimming, days out ect , I do find yoga is helping me as I'm joint hypermobile too so if I don't stretch every day my pain is worse but thats me  it might not suit everyone, hope you find something soon  x
  • JennielouiseJennielouise Member Posts: 1 Listener
    Hello everyone, sorry to jump on this thread but I need some advice for my mum who has recently been diagnosed with spinal stenosis.

    Since we unexpectedly lost my dad just over two years ago my mum's health has deteriorated. She refuses to take naproxen to ease the pain as she  contributes this to my dad's passing. Yet she struggles everyday and is sleeping on average 3 hours a night - I'm worried :(

    My mum and dad never had much money and whilst I try to help financially, the loss of his income and recent news that , I quote ' his pension died with him' is just another burden to carry (my mum only qualifies for her pension in a few years)

    Does anyone receive any financial help to live with this condition? My mum has never claimed any kind of benefit so she really would know where to start. 

    Thank In advance for any information anyone could give.
  • TimmoTimmo Member Posts: 1 Listener
    Hello all, another lumber SS sufferer here, diagnosed in 2017 and 47 yrs old at the time.

    No answers particularly, but thought it could be useful to talk about my experiences so far through the NHS - not all good, but doesn't mean it couldn't be. 

    Pre-diagnosis symptoms were lower back pain and an odd tight/uncomfortable feeling in my calves when walking. Slowly worsened to the here and now where it's not so much the pain, which is a factor, but more the weakness in my legs and the fact that I'm slowly losing the use of my right leg - pronounced limp, can't rise on right hand tip toe, numbness and just can'r easily walk far. And, my god, the fatigue - I just can't be bothered to do anything having always been fit, healthy and sporty.

    I'm surprised and concerned to hear that MRI's have been an issue, or just simply not forthcoming. I've had two since 2017. I've also had two steroid epidurals which massively helped the pain, but only for about four weeks each time. Surgery was on the table as an option from the get-go, and still is, but here's the rub; my consultant!

    He's just not approachable, talkative, friendly, warm, or it has to be said, respectful. Although nice to have I can put up without the friendliness, but I think empathy, the ability to communicate and respectfulness is a prerequisite when you're likely to be under his knife.

    He's cancelled appointments, most recently he just didn't attend an appointment leaving his registrar to stand in, but he, as nice as he was, didn't feel comfortable discussing my surgery as he's not a spinal surgeon. This was the whole point of the meeting. Absolute waste of time and my afternoon off work.

    So, what am I doing about this? My GP is great and I've put her in the picture to the point she's looking into a second opinion for me with another consultant who through my own research, and through a recommendation, I really want to see if at all possible - legally we don't have a right to second option through the NHS - I'm hoping I can, however, put a good enough case forward to warrant one. BTW, my borough and appointments are currently in Croydon and the 2nd opinion consultant is at Guys, London Bridge, so still close to home and right by where I work.

    I think based on my experience and if I could advise, please be prescriptive with your GP, and of course it helps to have a sympathetic one. Tell them that you want an MRI, be insistent; without how can Stenosis be properly diagnosed? Explore the possibility of epidurals - short term, but but they really are pain busting and at very least could help ease an upcoming holiday or such like! 

    This is your only body. Do not feel you can't gently or (respectfully) robustly push back if you're not happy.

    Question, has anyone find out whether Stenosis is classed as chronic and if so, what's the source? I'd be interested to see,

    Good luck everyone.
  • Chloe_ScopeChloe_Scope Administrator Posts: 8,970 Scope community team
    Hi @Timmo and a very warm welcome to the community! Thank you for taking the time to share this with us all, it's great to have you here. Please do let us know if we can do anything to support you. :)
    Community Partner
    Scope
  • pollyanna1052pollyanna1052 Member Posts: 1,987 Disability Gamechanger
    Hi, my sister has had 2 serious spinal surgeries due to spinal stenosis.

    9 years ago, she has a `cage` of nuts and bolts inserted in her lower back, to take the pressure off her degenerative vertebrae. 2.5 years ago, she had another op higher up and now she could be looking at a 3rd op.

    It affects her legs...they just go from under her and there is a lot of pain in her back.
  • mark56mark56 Member Posts: 2 Listener
    Hi everyone   I'm mark and have been  suffering  from spinal  stenosis  from 2003  , when I had a accident  at work. It took me over 9 months to see a consultant .After  having  a scan they found the discs at L2 L3 L4  two had disappeared  and the third had half gone. The pain drives me mad, I have had numerous  injections  and a decompression  operation  which  really  didn't  help.All they are doing  is just trying  to control  with medication. 
  • Adrian_ScopeAdrian_Scope Administrator Posts: 7,121 Scope community team
    edited February 11
    Hi @mark56. I'm sorry to hear how much pain you're in. How long have you been trying to control the pain with medication? I'm going to tag in @ClaireSaul as she might be able to offer some advice.
    Senior Community Partner
    Scope
  • mark56mark56 Member Posts: 2 Listener
    Hi adrian, it's  been about the last ten years  I've been trying  the medication  route.  Thanks for your reply,  have you the same sort of problems. 
  • FIONADTFIONADT Member Posts: 13 Listener
    I was told in 2012 by a neurologist  DR Oswald Jack i needed to see a shrink as i was just imagining  my problem and costing the NHS too much money at the sometime an MRI showed my dics in my neck were knackered he  never acknowledged  or told me about the discs.  Move on to 2018 another scan show  a worsening of the problem and was told i have Cervical Spinal stenosis. I ham not bothering with anything any more keep walking and kep my weight down  to mange it trying to find a job but no luck. In a sense i,m just waiting for the sit to hit the fan.  I very unsteady at the money and feeling down i don't want medication as it will just put weight on me whihc is nota good idea
  • pollyanna1052pollyanna1052 Member Posts: 1,987 Disability Gamechanger
    FIONADT said:
    I was told in 2012 by a neurologist  DR Oswald Jack i needed to see a shrink as i was just imagining  my problem and costing the NHS too much money at the sometime an MRI showed my dics in my neck were knackered he  never acknowledged  or told me about the discs.  Move on to 2018 another scan show  a worsening of the problem and was told i have Cervical Spinal stenosis. I ham not bothering with anything any more keep walking and kep my weight down  to mange it trying to find a job but no luck. In a sense i,m just waiting for the sit to hit the fan.  I very unsteady at the money and feeling down i don't want medication as it will just put weight on me whihc is nota good idea

    Hi there. I am saddened to read how badly you were treated by the medical profession. It really is not on. Have you complained at all? You would be well within your rights to. But I do understand if you don't have the spirit or stamina to fight the big guys.


    I was shoved around for 22 years, before I got my diagnosis.
    Just to bring you up to date re my sister with spinal stenosis. She wasn't offered a 3rd operation and didn't want one anyway.
    She is now almost totally bed bound, never goes out and lives with chronic pain levels.

    Take care.Pollyxx
  • FIONADTFIONADT Member Posts: 13 Listener
    i complained in 2012 and got nowhere he was convinced  i need a shrink. All a shrink ddi was try to convice me there was nothing wrong i came home feeling worse. I
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