Spinal stenosis group chat - Page 2 — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

Spinal stenosis group chat

2»

Comments

  • chiarieds
    chiarieds Community member Posts: 15,895 Disability Gamechanger
    edited January 2022
    Hi @AntonMarty - & welcome to the community. There isn't actually a category on the site that is 'just' for spinal stenosis. You can however search for this (using a desktop computer, for me this is at the top of the page....see a magnifying glass), & I found several posts about spinal stenosis. Some were in the 'Chronic pain' category, & some in the 'Rare, invisible & undiagnosed conditions,' which includes neurological conditions, for instance. We have certainly had many members with this, but not all will be active on the site.
    This is where you can see the different categories: https://forum.scope.org.uk/categories    scroll down to the 'Talk about your impairment' section.
    I'm sorry the site seems a little confusing, but I hope this will help you find your way around a little.

  • AntonMarty
    AntonMarty Community member Posts: 2 Listener
    Thanks!  Osteoarthritis based spinal stenosis is so common and so discouraging to have I've been assuming there must be several large forums on the net somewhere.  But haven't found them.
  • Ian777
    Ian777 Community member Posts: 8 Listener
    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.
    Hi - Browsing the web to find out more about this as its really starting to affect me daily now - Interested to hear you diagnosed 2015 but it seems to have got better, or less of an issue if I read your message/intro correctly? I have so many questions but before hitting you with them is this the right forum for that please? Regards Ian
  • poppy123456
    poppy123456 Community member Posts: 52,414 Disability Gamechanger
    Ian777 said:
    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.
    Hi - Browsing the web to find out more about this as its really starting to affect me daily now - Interested to hear you diagnosed 2015 but it seems to have got better, or less of an issue if I read your message/intro correctly? I have so many questions but before hitting you with them is this the right forum for that please? Regards Ian

    You've posted on an old thread and the member Generalsciatica hasn't been active since Oct 2019 so you may not have a reply.
    We do have some members that have this condition. Anyone can join the scope forum.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Morning @Ian777 welcome to the group, ask your own question, if your ready to ofcourse, there are a few of us in the group with stenosis, me included. 
  • Ian777
    Ian777 Community member Posts: 8 Listener
    Hi, thanks- I am looking to find out how this develops over the years, if it worsens etc. If it does worsen, in what way - enough to stop reasonable levels of mobility? Treatment I have had so far, apart from the diagnostic scans etc, are for pain relief and some physio to improve muscles around the areas affected (the pain relief helps but the physio hasn't achieved anything (except sometimes a lot more pain after doing them).
    Taking into account the period I did nothing about it and then diagnosis I suppose I've had this for around 7 years but its def getting worse more recently. I'm wary of an op for it as I can still get about and the Consultant made quite an issue of the fact it has risk (this was a few years back when he was discussing the possible routes for dealing with it but he said drugs and physio would be best). Now its affected my sports life, which has stopped and without really realising it, its shaping everything from holidays to shopping trips. I keep living each day with it as if thats the way it is to be from now on, but I can see that may not be the case - it looks like I need to consider beyond. 
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Bless you @Ian777 sounds like you have been lucky up to now.
    I'm in my 60's so i don't know if that makes much difference or which vertibra is affected mines L4/L5 if i'm remembering right ha ha. With my excercises i have managed to get the sciatic pains down to more of a dull ache in my legs and feet now, my walking isn't great but consultant and physio encouraging me to walk, through the pain, so i don't get other problems with my muscles. I use walking sticks more now to help me. One thing i would say is a walkin shower, at the moment i have a shower over the bath, we are having the bathroom done early months of next year, that will be a big help. Are you looking at preparing for you future and getting adaptions done now ?
  • Ian777
    Ian777 Community member Posts: 8 Listener
    I'm in my 60's too - and mine is also Lumbar spine L4/L5 with a "circumferential disc bulging compressing the left L5 nerve root" says my notes. My sciatic pain is down my left leg but I have most issues with walking distances now and back pain which keeps me awake too - it does help the sciatic pain if I bend down and touch my toes (or that type of motion should I say - my arms would need to grow a bit more these days). A walk in shower I should have done a couple of years back when I had the bathroom done, I didn't think of it then - I have a shower upstairs but longer term it will need to be downstairs or possibly a move beckons. Over what sort of time frame does this develop I wonder - are there any generalities with this?
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    I had the pain in both legs and feet, i have lived with back pain all my life, but recently with the stenosis i have noticed the pain is getting more berable or my body is getting used to it. I did feel better once i packed up work, gives me more time to rest and take life slower. Walking is my main issue, so i am hoping this does not get worse, my consultant did say if i had surgary intervention i could end up in a wheel chair, so hopefully this wont happen.
    Hows your bladder, mines got weaker and i am not having full sensation of a full bladder, so i remind myself to go to the toilet every hour, to avoid accidents. I have got a nice reclining chair in the lounge which helps me sleep better some nights. Oh and i invested in orthopedic cushions to sit on mainly in the car, i'm not a driver so can't help you there. I would say judging by what my doc says to me, that everyone is different i just keep doing/trying to do what the hospital tell me to try ie; walking through the pain to keep my muscles strong. I will say i have 4 dead disc's, which has happened slowly over the last twenty years and that hasn't caused me any more mobility problems, just extra pain relief sometimes.
  • Ian777
    Ian777 Community member Posts: 8 Listener
    SueHeath said:
    I had the pain in both legs and feet, i have lived with back pain all my life, but recently with the stenosis i have noticed the pain is getting more berable or my body is getting used to it. I did feel better once i packed up work, gives me more time to rest and take life slower. Walking is my main issue, so i am hoping this does not get worse, my consultant did say if i had surgary intervention i could end up in a wheel chair, so hopefully this wont happen.
    Hows your bladder, mines got weaker and i am not having full sensation of a full bladder, so i remind myself to go to the toilet every hour, to avoid accidents. I have got a nice reclining chair in the lounge which helps me sleep better some nights. Oh and i invested in orthopedic cushions to sit on mainly in the car, i'm not a driver so can't help you there. I would say judging by what my doc says to me, that everyone is different i just keep doing/trying to do what the hospital tell me to try ie; walking through the pain to keep my muscles strong. I will say i have 4 dead disc's, which has happened slowly over the last twenty years and that hasn't caused me any more mobility problems, just extra pain relief sometimes.
    Oh my - How awful for you. I thankfully (well, yet at least) have only pain issues and that can be stopped in the main by Naproxen and Co-cods and modifying what I'm doing. Sleeping is sometimes bad, I often come downstairs and sleep in a recliner chair which I would have expected to be worse but I think its because I can get an angle in my spine it finds comfortable - probably my best way of sleeping now. I have not been offered surgery, I've not been troubling the Docs with it too much but sort of getting along with it really. On what I've read surgery is sometimes very successful, but often not and as you said with the wheelchair bit, potentially could make things a whole lot worse. I'm not ready to chance that while I can stay mobile at least. 
  • somersetjohn
    somersetjohn Community member Posts: 2 Listener
    A consultant physio who I have known for many years and who is well aware of my spinal problems told me on more than one occasion 'whatever you do John, "stay away from the man with the sharp knives."  I have taken his advice and have managed to stay, in part, fairly mobile assisted at times by wheelchairs, scooters, sticks and other aids.   I have been using morphine patches of increasing strength, for nearly 30 years supported at times by OTC medication.  I am now 83 years old so in my book that counts as a win.  However I am now so disabled I can't raise the enthusiasm to do very much at all.  It all started with lumbar stenosis and now includes cervical stenosis.   
    All the time you are well enough, and with the right medication, are capable of enjoying whatever quality of life you can manage stick with it.  These forums are full of cases where the surgery has caused more damage and pain causing operation after operation with little or no improvement in quality of life.  You see these cases particularly from the USA.
    I appreciate some folk will say I'm wrong but I speak only for myself.  I have lived with stenosis just about as bad as it gets but if you can make allowances and live a life that's as full as you can make it I would settle for that.  I would say that a loving wife is one hell of an advantage,
    Good wishes to everyone
  • somersetjohn
    somersetjohn Community member Posts: 2 Listener
    Where are you Ian or Sue?  I thought one or both of you may have commented on my post.  Kindred spirits as it were.  We may be able to help each other.  With encouragement if nothing else.   Meanwhile I hope you are feeling better.  Best wishes John

Brightness

Complete our feedback form and tell us how we can make the community better.