Spinal stenosis group chat

trytosmile

I have just registered on line with the scope community web site. I have only just been diagnosed with lumber stenosis an am overloaded with questions . Not a lot of help from my GP. It would be good to chat with someone with same "pain" and fear of surgery and what is still to come. Thankyou . But I may not find this "page " again. My IT skills are not to great.

When I log off and then on another day log on, how do I then find the Lumber stenosis group chat page as it doesn't appear in catagories.

thankyou

Rosie_Scope

Hi @trytosmile, I've replied with some instructions over on your other post. Hopefully that'll make it easier to find things again ☺️

Here's how to bookmark a discussion.

Ian777

I’m still on painkiller route and up until recently the combination i have seem to keep pain At bay except nighttime when their effect conks out after few hours. I really dont want the op option, docs seem to discourage it too?

Generalsciatica

Ian 777, hello to you and well done for finding the Spinal Stenosis chat group. It is NOT for us to give medical advice. What we do is talk and share particular issues, and find a common thread which could help with the pain management of this not often talked about condition. The first thing seems to be to get on top of the pain, using the prescribed medicines from the GP. We are all different, but I found Tramadol and Co-codamol took the edge off the pain initially. It is important to take them regularly so they build up in your system. Doctors and Consultants are rightfully nervous of operating too soon, because they often make mistakes which are irreversible. If your stenosis (a narrowing) is severe and debilitating, try to be patient with it, and don't beat yourself up! You must begin a different way of managing your daily living. Alongside pain management is that you need to claim all the welfare benefits to which you are entitled. They are not a charity, but YOUR money. A benefits check from your local Citizens Advice Bureau, or Council Maximisation team can be a major start to managing your own personal circumstances. My own personal circumstances totally changed when my lumbar spinal stenosis was medically pronounced as incurable. Don't give up though, even though you may feel uncomfortable, in pain, isolated and wretched. You will learn to deal with the pain, the pressure of financial matters and when you share your troubles, you get them off your chest. YES YOU CAN!

Best

Generalsciatica.

trytosmile

Goodmorning to Ian 777 and Generalsciatica

I am new to Scope and found it in my search for understanding my recent diagnosis of Lumber Stenosis L2 andL3 and L4 and L5,

I have posted my story so far but its hasn't appeared here. I am finding the web site hard to work out. My fault, not so good with IT. Seems to be disjointed, My story , being new, must be under another catergory. I'll work it out.

Generalsciatica

Trytosmile. Hello to you, and all you stenotic lovelies out there. I too have trouble with computers, emails and websites, or I would be in touch more often. Likewise to Ian 777, you will learn to manage the Spinal Stenosis condition, and hopefully this group chat will be a springboard to better management of your condition. Going under the knife should be the absolute last resort, if it can be avoided. Thank you all for all of your contributions. It could be beneficial to all Stenosis sufferers. Every contribution is an inspiration and an encouragement. YES YOU CAN! - Generalsciatica.

Ian777

Getting the right pain relief makes a big difference - If you get sciatic pain as welI i find bending over and touching my toes ( or that shape at least lol) helps. Also, i get lots of pain in the night and have found sitting and sleeping in a reclining armchair or sofa ( type with rising foot support) helps - its being in a different shape that relieves the pinching of my spine where stenosis is.

Meredithshep

Hope you don't mind me joining in, I had surgery a long long time ago after having a bulging disc and some foraminal stenosis. At that time it was an ortho surgeon who operated and there was no neurosurgeon input at all and no scan before the surgery as they were not in every hospital back then, I was young with toddlers at home. It didn't go well for me and if I could turn the clock back I wouldn't have agreed to the surgery but it was explained at that time as a simple surgery to pop the offending bone and bit of disc out. I spent 5 months in hospital and 3 years bedbound, have no control of my bladder and a permanently damaged L5 S1 nerve. My leg is always weak and I don't have any reflex in my ankle or knee on that side and my foot drops. A different ortho surgeon operated again and it did help unfortunately the surgery caused a lot of fibrosis so although initially I felt a lot of relief the pain did return as nerves got caught up in the fibrosis but at least I was no longer stuck in bed all day every day. I had steroid injections in my lumbar region every 6 months for over 27 years to help with the back pain (unfortunately this did nothing for the leg pain) it was then decided that steroid injections can cause damage over so many years so now I have radiofrequency denervation which does help but it doesn't last as these tiny nerves do grow back so it has to be repeated. I missed out on a trial surgery of disc replacement of the L4 and L5 discs and as I have discs out in the thoracic region and stenosis it was decided that a fusion would put more pressure on the thoracic spine. I am currently waiting for surgery on my cervical spine, it's affecting my shoulders and arms/hands and the headaches are terrible. I know surgery has come a long long way since I had my first operation so wouldn't advise anyone to listen to my experience and make a decision regarding surgery on it. These days we have amazing neurosurgeons and spinal teams. I feel I no longer have a choice with my cervical spine, I am struggling to use my stick to walk as it's getting worse (if I could avoid surgery I really would) and I was told that although this surgery won't cure it should stop it getting worse but was also told that I may need another eventually as it will put more pressure on the discs and joints above. On a plus note though the steroid injections over the years did have a transient effect on my RA (was diagnosed as a teen) which meant I have probably avoided a lot of damage to other joints. I take a lot of painkillers every day, the main things over the years have been nerve pain, my poor mobility but now my arms are affected too. I need help with my personal care every day, I can walk but only short distances and can't stand for long or sit in one position for long either. I find a pillow under my knees when lay flat helps and also a rolled towel in the hollow of my neck and no pillow helps too. I have an electric recliner which I use to change position when sitting, a walk in shower with a shower chair, perching stool and the best thing I ever bought was a raised toilet, it's taller than your average loo and half my family laugh because thier feet dangle when sat on it but it's perfect for me and no need for one of those horrible plastic things that sit on your normal loo to raise it.

Ian777

If there is anything positive to be gained from your post, and there really is, and thats however bad I was feeling about my condition I realise I've dodged a bullet. So sorry to hear all you have been, and are, going through - its a horrific tale. It demonstrates how bad this can be, and potentially a lot worse when tampering with it. I daresay there are many who benefit from a successful surgery but perhaps they wouldn't be on here talking about it, now happy with their lot - However, I have little to no evidence of that…. Thanks for sharing your story, I hope you get some relief soon

trytosmile

Good morning MeriIdithshep

You are an amazing brave young Lady. My pain and short journey fades into the background.

Your body is amazing as you live with this battle. Its the weirdest of conditions . I has never heard of Lumber stenosis. in fact its degeneration of the spine a severe form of arthritis.

I seem to have been bullied into surgery , Or at least I don't know . It took two years to get my doctors to let me be referred for an MRI they treat me as lady of a certain age ie I am 72 , its arthritis go home and do pilates.

Having now had the MRI , as the electric shock type ZZZZ in my legs hit home , legs and lower back I ended up in A&E . My GP feared Caudia equine. Outcome was lumber stenosis with partial compression of the caudia, had a chat with a registra who put me down as surgery. But on reflection when I got home and Googled as you do there is alot of info out there that suggests surgery should be the last resort. But I may be past the alternatives. The one question I need answering is on a scale of of 1 to ten where abouts do I fit. I was reasonably fit and all of a sudden I am not. Aged ten years over night. Haven't found pain control yet and fear falling down in the street as legs weaken.

I try not to think to far ahead and take each day as it comes. The worst for me was not finding a local group to meet up with who have the same diagnosis. Its such a weird sensation in my back and legs, on the outside I look and stand normal but standing too long is a nightmare, inside is the "pain" "ache" "zzzzz" electric shocks , how ever to describe it . Even the best surgeon in the world doesn't know how it feels.

So at night the gremlins kick in and the thourghts of why me, how did this happen I haven't had a trauma , a car crash or a broken bone … its just unfortunate bad luck of degenerative osteoarthritis.

But I have found this Chat site and shared Lumber stenosis. There are more than me. and I will live as best I can. Thankyou and best wishes. x