I have spinal stenosis. Being pushed into surgery. Anyone else have experience of this?

banjolilywhite

I have just been diagnosed as having spinal stenosis in the lumbar area. Being pushed in to surgery. Does anyone have any experience in this area? Thank you 

L_Volunteer

Hi @banjolilywhite. Welcome to Scope's forum. It is great to see you have joined us. How are you feeling at the moment?

Thanks for reaching out to us. Unfortunately, I don't have experience in this area. However, I am hoping our wonderful community members will be able to respond to you soon and share their experiences.

How are you feeling about the idea of having spinal stenosis in the lumbar area and being pushed into the surgery? We are here for you and listening to you if you would like to share more with us.

Please don't hesitate to let us know if we can do anything else to support you. You don't have to face this, or anything else, alone if you don't want to.

Take care for now and we will look forward to, hopefully, hearing from you again soon 

durhamjaide2001

I have had surgery to correct a curve in my spine if that's any use?

Tori_Scope

A warm welcome to the community from me too @banjolilywhite  

Do you mind me asking who's making you feel pressured to get surgery? 

banjolilywhite

I feel my consultant went straight to this. Seems like it's not a big surgery to him. But I'm concerned it is and Im still quite young to have back surgery. 

Hannah_Alumni

Hello @banjolilywhite

I can understand that it is a shock and feels like a rushed decision for you. Have you thought about getting a second opinion or having a chat with your GP?

SueHeath

Good morning @banjolilywhite welcome to the group.
I have stenosis but unfortunately i can not have the opp as my spine is not stable enough.
I know how your feeling tho, when you first have the diagnosis they tell you about the opp as there is no cure, don't forget you don't have to have the opp if your not happy to. Has the surgeon sent you any papers/booklet on the procedure, I found a lot of reading matter on line, with all the plus and minuses about the surgery.
I'm sure there are others in the group who have had the procedure, if you ready to look around the site have a look under the categories and see if you can find the other chats, i know it has been spoken about.
Hopefully some one else will find your question. 

CountryMimi

Hi @banjolilywhite welcome to the forum!

I have spinal stenosis too.
I was rushed into hospital multiple times back in July.

Inititally, I was offered surgery, but wasn't aware or the risks it came with, so the neurosurgeon I was under at the time suggested an option would be to have an epidural. I was told it could have an effect for months on end, could be hours or days and unfortunately for me, it was the latter. 

I was discharged from hospital, with the idea of going to see the neurosurgeon 6 weeks later for a review.

However, following episodes of incontinence, I was rushed into hospital, where I was diagnosed with cauda equina and the next morning, I was literally handed the papers without discussion for a laminectomy and discectomy as it was explained that when it comes to the threat of cauda equina, pretty much any rule book is thrown out of the window as it is so serious.

I should add that I was absolutely petrified, but as my mum pointed out, neurosurgeons have so much experience with this type of surgery and if they hadn't thought it would be the best option for me, it wouldn't have been offered. Whilst I was so concerned, the team performing the surgery and those in the operating theatre at the time were comforting, particularly the anaesthetist. Of course I was asleep at the time of surgery, but those I met prior to were so supportive.

Unfortunately 5 months on, I'm still suffering with chronic pain and won't be returning to work.

Of course, the decision is entirely up to you, but personally if I were to go through the whole process again, I think I'd probably go straight for the surgery, if I'd have known I was going to end up in a worse position. Whilst I'm still suffering with pain, it has taken the pain I was suffering with from the prolapsed disc away and perhaps if I'd just had the surgery instead of the epidural, I might not have as much problems with the incontinence as I do now.

I was advised that it can take up to two years to make a full recovery. I've also been told that I might recover from the incontinence too, but I think it's just taking it one day at a time really.

If you don't mind me asking, how old are you? Just curious as I'm only 32 and I'd like to connect with others my age as well.

Here if you have any questions or just need any support in general 🙂

CountryMimi

@SueHeath

I'm so sorry to hear about your situation xxx

SueHeath

Thank you @CountryMimi i'm really glad you joined this thread and bless you, you are so young to have this condition, i've always suffered with my back (curvature, degenertive disc's etc) when i was just about your age, but i always managed to stay in work, with the help of drugs of course. The stenosis was only found, after sudden change just before the covid. I haven't been able to work with this bout. I'm 65 now, so i do feel for you darling.
Can i just ask you about the incontinence, i've been having bouts, were i can't hold my wee in and loss of sensation in the bladder, is this like yours ??
Not taking the thread of you @banjolilywhite i think it helps to see different stages/ages etc that people are in.

CountryMimi

@SueHeath

Oh bless you, that's lovely of you to say 🤗

That is honestly amazing that you managed to stay in work for such a long time! How are you feeling about having had to give up working? It must be tough.

I work in a nursery and so, that's part of the reason why I can't return to work - currently being assessed for capability to work and hoping the outcome will be that I can't return to work at the moment, but that it can be monitored and reviewed.

Absolutely, of course you can! Yeah, the majority of my incontinence has been at night time, but I did have what I think is called saddle anaesthesia at one point. I self referred to bowel and bladder, don't know if you've been under their care, but they can offer medication to dry you up. Very occasionally, I have had incontinence during the day, but thankfully it isn't very frequent at all!

Just curious to know, when you've had incontinence, does it have an effect on other parts of your body? Just for example, I get tons of pain in my legs and it seems to fluctuate with the incontinence.

SueHeath

CountryMimi said:

@SueHeath

Oh bless you, that's lovely of you to say 🤗

That is honestly amazing that you managed to stay in work for such a long time! How are you feeling about having had to give up working? It must be tough.

I work in a nursery and so, that's part of the reason why I can't return to work - currently being assessed for capability to work and hoping the outcome will be that I can't return to work at the moment, but that it can be monitored and reviewed.

Absolutely, of course you can! Yeah, the majority of my incontinence has been at night time, but I did have what I think is called saddle anaesthesia at one point. I self referred to bowel and bladder, don't know if you've been under their care, but they can offer medication to dry you up. Very occasionally, I have had incontinence during the day, but thankfully it isn't very frequent at all!

Just curious to know, when you've had incontinence, does it have an effect on other parts of your body? Just for example, I get tons of pain in my legs and it seems to fluctuate with the incontinence.

Yep i get more pain when i pass wind and i have to be desperate to go to the toilet properly as i can't push because of the pain.
The reasons i asked is the Doc's/hospital keep telling me if i get incontinence i must go straight to a&e but i'm avoiding that like the plague ha ha, thought it was the meds that took the sensation (dulexatine) away but i've had to come of them because they were causing me problems with my head/thoughts/thinking etc. I now have total numbness from my left hip across my pelvis, which is a weird sensation ha ha. I'm on the waiting list for a pain blocker opp.
Just finished the process of early retirement due to ill health, sad i had to finish like that but just couldn't stand/walk long enough to do my job. I was a catering manager within the schools. 

CountryMimi

Please please please don't put it off as it could be so much worse. Have they spoken to you about cauda equina?

I'm so sorry, that must be horrible re toileting!

Oh gosh, definitely not good when it affects your mental health!

Of course I'm not a doctor and in no position to diagnose anything, so just basing things on my own experience, but it does sound like it could be saddle anaesthesia. I know it's such a lengthy process, but if you're really reluctant to go to A&E, maybe think about contacting 111 first.

Oh I'm so sorry, that cannot have been easy at all! How are you finding it all? 

SueHeath

Enough about me ha ha 

So sorry @banjolilywhite but as you can see there are members on here that can help/talk about things - are you ready to chat yet ?? 

banjolilywhite

@SueHeath @CountryMimi thank you for your replies. I have booked to see a physiotherapist now that I have a diagnosis. Have seen many in the past and although they help for a bit I know it’s not a long term cure. Does the pain get worse the longer you have live with it. I find sometimes it’s agonizing and sometimes I barely notice it. So Im wondering if it’s worth putting off the op. I have a pre op next week so hoping that will also answer my questions. Very undecided at the moment 

SueHeath

Bless you @banjolilywhite i think any opp can be a worry, the hospital are the best people to talk to they will give you all the pro's and con's and should also tell you what can happen if you decide not to have it, it's still your choice.
The surgeon has told me if i did insist on having the procedure, with how unstable my spine is, i would certainly end up in a wheel chair further down the line. I am lucky at the moment, the sciatic pain in both legs, has now turned into a deep dull pain, which i find easier to cope with. 
You havn't said how old you are, i'm 65 i have always suffered with my back, curviture, dieing disc's, this stenosis only started about 3-4 years ago for me.
Please let us know what you decide, and i am wishing you well.

banjolilywhite

I’m 47, hopefully I’ll know more after the pre op. I will update. @SueHeath thank you for replying 

SueHeath

Your probably at the right age to have the opp darling, lot to discuss, just a thought, might be worth asking, if they think your spine is likely to have any more movement, with my curveture we new it would start moving more as i got older, thats probably another reason i couldn't have the opp. 

banjolilywhite

@SueHeath brilliant thank you, will add it to my list of questions 

SueHeath

Good luck darling x

CountryMimi

@banjolilywhite I believe it can get worse the longer it goes untreated, but I've only been aware of my diagnosis since June when I was admitted into hospital, so definitely still very new to it all.

I think that's a good idea to go to the pre op and then you're kind of slightly more prepared.

Here if you need any support 🙂