Spinal stenosis group chat

chiarieds

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

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

Generalsciatica 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

poppy123456

Ian777 said:

Generalsciatica 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.

SueHeath

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

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

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

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

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

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

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

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

rfraser2

Hi all. I'm a stenosis sufferer since 2019. Steroid shots, when I can get them,  have kept me in the game.  But I am curious if others find that stationary bike activity exacerbates the pain.  I want to learn if it's the cycling or the way I'm doing the cycling.  Also,  I want to get am electric bike,  and if putting weight on the seat is causing the pain,  then why bother? Thanx for your input. 

Generalsciatica

Dear Ian 777, AntonMarty,Poppy, SueHeath, Somerset john, rfraser2, and any others. Sorry for the delay. So encouraging to hear from you all and feeling slightly tearful for not responding sooner. I have very poor computer skills and still unsure how this website works!
I have read your contributions and have the deepest sighs with your ongoing pains and symptoms of Spinal Stenosis. I note Somersetjohn, now 83 has the wisdom to stay away from the knife and the failed correctional surgeries performed mostly in the USA! Your comparing symptoms and helpful tips, advice and information is exactly what I was looking for when requesting a chat concerning Spinal Stenosis. I note this post could have been moved to CHRONIC PAIN and if so I will be grateful and happy to continue with you all, and yes I still have the common thread of chronic pain symptoms, now diagnosed INCURABLE, which I wish to share with you!! Please forgive my absence. Yours sincerely, 
Generalsciatica. X.

Generalsciatica

Dear rfraser2. Thanks for posting to the Spinal Stenosis discussion. I have learned that everybody's pain is different. Although the symptoms can be similar, what might relieve one person could exacerbate the symptoms of another. For me, any physical exertions, even those of daily living, can produce moderate to severe painful flare-up, often appearing 2 days later. I have heard it suggested that bike riding provides some relief, as does leaning on a shopping trolley! I am sure that being ontop of the pains by using the medication is a helpful tool, but there is a learning curve, of how much to use and when to use them, which varies with our limitations and lifestyle! I use a lot of bed rest and also think it pays to be consistently mindful of our conditions, by not taking on too much, avoiding stretching for that kettle, doing things more slowly, and thinking about the consequences of doing the things we used to take for granted, before we were carrying this Spinal Stenosis injury. Learning to live with, and manage the condition is the key, and there will be better days which we can share, and the worst ones which we can get off our chest, hopefully talking about it and using this forum.
Thanks for posting. Take care,
Best. 
Generalsciatica. 

Ian777

rfraser2 said:

Hi all. I'm a stenosis sufferer since 2019. Steroid shots, when I can get them,  have kept me in the game.  But I am curious if others find that stationary bike activity exacerbates the pain.  I want to learn if it's the cycling or the way I'm doing the cycling.  Also,  I want to get am electric bike,  and if putting weight on the seat is causing the pain,  then why bother? Thanx for your input. 

Hi rfraser2,

I have lower disc issues with my stenosis but find bike riding ok really - I don't do it as often as I perhaps should, Summer thing only for me - which reminds me I must pump up the tyres..

Within reason, the best position for me is that sort of bike riding stance - I find standing and walking the worst, for the stenosis at least. Too long in that position and my disc issue makes it painful to straighten but thats (hopefully) not why you are on here. I'd say get out on the electric bike, smell a bit of fresh air and at least it offers a distraction - plus if you run out of pedal power - throttle up! Best Regards Ian

somersetjohn

Good to hear from you all.  We all  struggle on as best we can. If the pain gets too bad there's always the bed and a stiff drink.  I'll continue with this post when I have more time. John