Spinal stenosis group chat — Scope | Disability forum
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Spinal stenosis group chat

Generalsciatica
Generalsciatica Member Posts: 20 Courageous
Hello! Is this the spinal stenosis chat group? Thanks Spiceman for the suggestions. - Generalsciatica.
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Comments

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Hi @Generalsciatica, you have posted a new thread in the 'ask a chronic pain advisor' board. I will move it to disabled people and I hope others will be able to find it. :)
    Scope

  • Generalsciatica
    Generalsciatica Member Posts: 20 Courageous
    Chloe. Hello again and thank you for helping out with 'threads' and 'posts' and emails.
  • Generalsciatica
    Generalsciatica Member Posts: 20 Courageous
    Hello. Is anybody interested in a spinal stenosis chat group?
    I have had acquired lumbar spinal stenosis since around spring 2015. Wow did it hurt?! Now, not as bad as it was, it still gives me much grief even after all this time. I would like to share my experience with this strange medical condition, or even just compare notes etc. All are welcome, so don't be shy!
    Together, yes we can! Kind regards, -
    Generalsciatica.
  • [Deleted User]
    [Deleted User] Posts: 231 Pioneering
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    [Deleted User] Posts: 231 Pioneering
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  • [Deleted User]
    [Deleted User] Posts: 231 Pioneering
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    [Deleted User] Posts: 231 Pioneering
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    [Deleted User] Posts: 231 Pioneering
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  • Generalsciatica
    Generalsciatica Member Posts: 20 Courageous
    Chobbly. Thanks for joining in this discussion. I haven't chatted to anybody with cervical spinal stenosis as yet. I have read about how debilitating it is. I can certainly recognise the host of symptoms of spasms, shocks, and pain which is off of the scale, where in any position, even bed-bound, finding the least worst position is the best one can do.
    What is interesting is the what you have said about mri scans, in that they do not provide for the symptoms of spinal stenosis whilst standing, for as you know, pain is always brought about by standing and walking.
    You have multiple spinal problems and I have only to ask how do you manage and live with them? Perhaps we can benefit by sharing notes.
    I see you have met my friend, Justdon! She is a real campaigner and likes helping people with disabilities. 
    I have read some of the awful points which were made from your experience with St. Tommy's and these are really shocking!! What sort of country do we live in??!
    Anyway, nice to talk to you. Please let me know how you get on with your treatment.
    They are offering me a procedure called radio frequency ablation! This is where they burn out the rebellious nerve. They cannot guarantee success and I am left at the decision crossroad again. If it is successful, then well done to the learned surgeon, but if it worsens, it is down to me!!
    Stay in touch. Together, we can!

  • Generalsciatica
    Generalsciatica Member Posts: 20 Courageous
    Hello Justdon. How are you my friend and sister in pain and suffering?! Yes, pain is a great leveller. How did you know I might be on this page? How are you doing with your new approach to getting a voice?
    Thanks for joining this page. I hope with your campaigning skills, we can add some real value to helping each other out, especially with hints and tips of how we are all coping with chronic pain. Not a pleasant thing, but at least we all have something in common. These discussions might even lead to some medical advances. Yes we can! With kind regards,
    Gen.
  • [Deleted User]
    [Deleted User] Posts: 231 Pioneering
    The user and all related content has been deleted.
  • Generalsciatica
    Generalsciatica Member Posts: 20 Courageous
    Justdon. Hello and how are you doing? I seemed to have lost your link!??
  • zakblood
    zakblood Member Posts: 419 Pioneering
    must have done something naughty, user and posts deleted and banned, 20 years also 

    spondyloarthropathy, spondylarthritis.

    canal stenosis with posterior disc bulges at L2/3 and L3/4, sagittal and axial T1 and T2, degeneration of lumber spine, injection offered and refused, (grounds of it can make you worse, taken tablets on offer instead) that was 1999, now in hindsight maybe wasn't the greatest of choices, as the tablets long term have given more more issue than a cure


  • Generalsciatica
    Generalsciatica Member Posts: 20 Courageous
    Zakblood. Thanks for joining in! Wow, you certainly have been through some painful stuff with multiple spinal issues! I know the pain is something off the scale and I am further grateful for the insight on the medical decisions you have shared. When the surgery is successful, the surgeon deserves the credit, but when it fails, it is always down to our consent. Having no medical qualifications, it seems difficult to make the correct decision to consent to surgery for the patient. I think I am due to go under the knife soon. I suppose the more information, the better the outcome. I always intrigues me how the decision makers of the DWP, can make decisions on people who have disabilities, without having any medical qualifications whatsoever, often resulting in a legal battle, just to get the deserving benefits!
    I see you have lumbar levels, and thoracic levels, which is alarming! I can only hope you are managing these conditions, as best as you can. 
    Thanks also for your comment on the spinal injections. I have had two now, without any improvement. In fact my leg is weaker since it was done.
    Please continue to post more discussion, if you like. It often helps more than trawling through the internet, looking for advice but only becoming more confused! Kind regards,
    Generalsciatica.

  • zakblood
    zakblood Member Posts: 419 Pioneering
    i got mine or so i was told by a spinal tap when i was 14 for suspect meningitis, seems they brushed either the bone or didn't quite do it right, and only found out in my late 20's

    what started off in a pain in the back ended up being both legs and lower back, while tablets helped at first, over 20 years of taking them, i know have bowel, bladder and kidney issues from long term use, so IBS, high blood pressure and just about everything else but i'm still alive and kicking, so can't complain, could be worse, then again DWP says i'm fit and well, so what do i or the Doctors know lol, so now looking for work thanks
     
  • Generalsciatica
    Generalsciatica Member Posts: 20 Courageous
    Zakblood. The treatment in your medical history sounds disturbing and I can't give medical advice, but it sounds like the very cause of your current condition. 
    I am presently taking tramadol and co-codamol regularly and could not function without them. Are you saying it is a good idea to try and discontinue them completely? 
    The DWP routinely close my claim after every assessment. I have over 7 expert medical opinions which agree my condition, whilst the only opinion which disagrees, is that of the decision maker of the DWP, who has no medical qualification whatsoever! I got tired of filling in forms all by myself and now have a welfare benefits solicitor to do the paperwork and appear at tribunal. I am not rich but had to save up for it. A suitable welfare specialist solicitor would trounce the DWP, at tribunal with the evidence you have of multiple spinal injury. 
    The DWP are well known for their failures in their duty towards disabled people, and if you are not getting the benefits which you deserve, I would like to encourage you not to give up. I'm on your side, because I too have suffered the systematic abuse, with my case against the DWP.
    I hope you don't give up. Not that money will solve all of your health problems, but getting the right amount of benefits, which you DESERVE, does take the sting out of being poor.
    Really nice to hear from you. Thanks for replying. Kind regards,
    Gen.
  • theninjaturtle
    theninjaturtle Member Posts: 3 Listener
    Hi all, In hope I am on the right area of the website apologies if not also apologies if this first post is long winded as my problems have only recently been diagnosed. So here it is my problems started approx 16 yrs ago with a really severe bad back 2 weeks then all ok few days then sciatica in left leg no pain just spasms then approx 3 months later a small tingling in left foot in 1 toe then over the yrs pins and needles numbness in both feet to the point where i walked around with a small screw in my trainer and foot. This has also spread to my hands which lack feeling and get cold. Over the yrs lots and lots doc appointments with me being told it could not be my back problems causing my ailments even told I was diabetic so lost 7 stone over 14 months still keeping having problems then many many appointments later finally getting a MRI scan of which was told y 1 doctor they do not give MRI Scans on bad backs in south wales! anyway had a call from doctor saying I have cervical stenosis with multi level and high wear right down spine plus apparently the nerve openings in my lumber area are closing around nerves causing my pain/numbness/tingling etc to feet and legs plus spasms severe shaking which is unbearable at night when trying to sleep. I have now seen a surgeon plus a nerve conduction study (report going to my doctor and surgeon soon ) I am taking gabapentin 3 x 600 daily amitriptyline 50 mg at night to help sleep and naproxen when needed but  none of these help when really bad. I feel let down by my doctors surgery for not having diagnosed this earlier indeed I would have changed my job which I was doing at times when I could plastering of all things which made things worse. I am really sorry for this being such a long post but I am at my wits end with not much hope in sight so any help or advice will be honestly greatly accepted and thanks in advance. Best regards all. 
  • janer1967
    janer1967 Member Posts: 16,533 Disability Gamechanger
    Hi @theninjaturtle

    This is an old discussion and most of the comments are from members no longer active 

    You might be better starting a new post of your own 
  • Generalsciatica
    Generalsciatica Member Posts: 20 Courageous
    Dear ninjaturtle,
    Thanks for your contribution to the discussion. Although I am not a doctor, you seem to have symptoms which are typical of spinal stenosis. Perhaps you need a 2nd opinion from another Healthcare Professional, especially as you're condition has not improved.
    My own condition is now 7 years old, but surgery has still been left by the medical team, as a last resort.The COVID pandemic has delayed treatment, but I have learned the medical team are correct in delaying surgery, because, so many things can go awry, therefore, going under the knife, should always be left until last.
    I found tramadol and co-codamol to be effective, but it can take a while to sort out what dosages are correct for you. Everybody is different. I needed maximum dosages of each medicine. I could not get on with naproxen and gabapentin!
    I found exercise, especially the wrong ones, just made things worse!
    I would try to get a second opinion, from a consultant, which normally means an MRI is routinely ordered. These imaging machines can reveal a lot of what is troubling you, then they can treat accordingly.
    There is no cure for my lumbar stenosis, so the trick is to be able to manage the pains and live with the condition in the best way you can. Do not be hard on yourself, because we are only human!
    My latest treatment is spinal injections, which are a pain management medicine.
    Everybody's contribution to this discussion is welcome. Maybe we can work it out!
    Thanks everybody for your interesting points.
    General Sciatica!

  • AntonMarty
    AntonMarty Member Posts: 2 Listener
    I'm a little confused by the site.  I'm looking for a discussion group for people with spinal stenosis.  Apologies if I'm in the wrong place.  Are the above posts the only three in this group since 2019?

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