Decompression surgery

[Jhpc]

Hi,

Has anyone went through decompression surgery in the lower back, I’ve been referred for this procedure, just waiting now on appointment, though there is a back log no surprise there with all that’s been going on.

[svfarmer]

Sorry can’t help you there but hope everything goes ok for you 😊

[Jhpc in reply to svfarmer]

Thanks bit apprehensive but just hope it will b worth it, in a lot of pain at t mo.

Take care x

[Barnclown]

Yes, I have: my type of decompression surgery was an instrumented fusion of several lumbar vertebrae to straighten early onset scoliosis (caused by hEDS-related severe spinal hypermobility + AID-related osteoporosis = several grade 2 lumbar vertebrae fractures with entrapment of nerve root)

Neurosurgery performed this in summer 2019...all things considered, the outcome has been positive: the nightmare nerve root pain is damped down & the titanium mechanical implants have stabilised things down there enough to make me feel structurally ‘safer’, so I’m GLAD I had this sophisticated surgery

but, as my neurosurgeon & rheumy had advised, @ 66 my early onset comorbidities all mean I gotta be philosophic about this big surgery + all the internal metal-work + yet another round of heavy duty general anaesthetic leaving me with a lot of continuing progressive spinal debilitation giving me all sorts of muscle, joint, circulation, neuro etc probs...& increased general disability....with so many conditions affecting my spine etc, this sort of surgery can’t be a cure-all

Also, even though my weight & fitness is pretty good despite all the illness, my recovery & rehabilitation after this surgery has been much slower & more laborious than it tends to be for ‘healthier, younger’ patients...it’s now 14 months and I’m only ‘just’ feeling as if the internal healing is nearly as complete as it can be, considering am on long term daily 10mg pred + quite heavy duty immunosuppression

I know there are several others here who’ve recently had decompression, so maybe they’ll reply re their experiences....hope you’ll let us know how you get on...take care & good luck 🍀❤️🍀❤️ Coco.

[Jhpc in reply to Barnclown]

I think your surgery sounds more complicated than mine Coco, far lateral ligament is my procedure, I’ve been told this will get rid of my leg pain which is in both legs now, when he re looked at my mri he could see wear and tear both sides so both Sides getting done. This won’t cure any back pain I was told, but I’m hoping as I had the 6 cortisone injections on xmas eve And once I’ve had this op that the back pain will have eased.

I’m 63 could but could be fitter and lose a bit of weight 😂.

If this doesn’t work then he said the next op would be to insert rods and screws in the lower back.

I keep walking when I can, but really hard some days. I’m lucky enough to be able to work from home my two days a week.

Thanks for your reply and good wishes, hope all goes well for you now that your recovering.

Heather

[Barnclown in reply to Jhpc]

Oh heather: am feeling your pain..as much as another can...sounds like you’re being a True Trojan about this...& your surgeon’s approach makes good sense to me - I’d managed to postpone my op for decades via conscientious selfhelp + body therapies + specialist pain clinic procedures, but we tend to know when we gotta give in & get operated‼️ The rods & screws op is what I’ve had - including the vertebral fusion, which is usually done to help all the metalwork stabilise things & release compression/s. Glad you can work from home + are keeping up as much walking as poss ❣️👏👏👏👏🤞🍀

[Jhpc in reply to Barnclown]

Ha my hubby says when we go out walking do you want to go back home, as he sees how much effort it takes me to walk, but I always no, we live by the sea so it’s worth the pain to see the views.

Yes I’ve been to various therapies, chiropractor etc. so realise op is best for me.

Take care & keep safe.

[Barnclown in reply to Jhpc]

😆 👏👏👏👏wish I could come walk with you...we live inland & I love walking around the woods & meadows here, but I used to live up in coastal cumbria & still long for the views...

[Jhpc in reply to Barnclown]

I live in Jersey C.I. and the beach is literally across the road from where I live, (I’m originally from Scotland but been here many many years)

Cumbria is supposed to be lovely.

I think we are so lucky to be able to get out and walk, my sister on the other hand is disabled and is unable to get out on her own, she’s been out once since lockdown as she’s had various issues and that was for a hospital appointment, wish we lived closer.

[Barnclown in reply to Jhpc]

Yes: too true 🤦🏼‍♀️...I’ve had many years of being so disabled one way or another that I couldn’t walk...somehow eventually we’ve got me going again, but each time I’m older & more disabled generally so...maybe loving the natural world + these decades of experience have helped me become philosophic about all this 🦓 disability...

[Jhpc in reply to Barnclown]

Very tough for you but you sound v strong and positive a good attitude, sending you gentle 🤗

[Barnclown in reply to Jhpc]

😉🤷🏼‍♀️trying my best, just like you ❣️🍀

[Krock1]

I was able to avoid surgery for over a decade by staying in front of the inflamation with various treatments. Stretching was key to the process. Finally, the situation in the lower back was no longer manageable and I had to go with screws and fusion. The operation was very successful and I was back to walking two plus miles a day and swimming a half mile shortly after that.

Now it seems that I may have over done it. Over the past few months my muscles have been flaring. I went through an episode of bursitis in my upper thigh about two months ago. Just got that under control and have been awoken during the night with severe back cramp and what appears to be a spontaneous tear of my hamstring. I will be getting MRI of my knee and lower back in about a week.

What I am trying to say is be cautious in your recovery and do not over do it. Be conservative in what you do and pay attention to what your body tells you.

[Jhpc in reply to Krock1]

Thanks for the advice how long ago did you have your op.

[Krawlins]

Hi there, yes I did by way of emergency though as it was so bad I could not move, eat, wee etc.

Was in hospital on morphine and catheterised then eventually had MRI. This showed compression of the spinal cord at L5S1 so once results known had op the next morning and the surgeon had to cancel his clinic. He came to see me the night before when he presumably got home to tell me I needed emergency surgery! At that point I was wondering if I’d ever walk again.

Well, from not being able to stand, walk or do anything for the previous few days (too long really to wait for emergency surgery but seems the only surgeon was on Easter leave) the next day I was able to get slowly from bed to chair, next day spend more time in chair than bed, physio continued after I left hospital including aquatherapy and it was amazing. My left leg suffered somewhat and I had issues with that and always will as surgery was just too late for me. However it was a flip pin’ miracle in comparison to my life the three weeks before as I was bed bound in the foetal position for days. Just getting me in the ambulance was dreadful. It was a worrying time but soon as I had that op, the next day was brilliant and I was nearly as good as new, just nerve issues I’m left with.

If you have similar symptoms to me then I indeed hope you will also have as much success.

Best Wishes with it all.

Kay

[Jhpc]

Very frightening experience for you, why did they leave you so long before they operated was it because of Covid?

My pain was mainly in the right thigh At first, moving towards the ankle, now it’s in the left thigh towards the ankle, the right side being the worst.

When I mentioned the left leg was now sore too, he said it was wear n tear both sides of the bulging disc as per MRI.

Such chronic pain at times especially standing or walking, sitting normally reduces the pain a great deal. I can’t walk very far but I do try and sit when it gets too bad then walk again.

I hope I don’t get to the stage you were at, but it is horrible and feel the pain is getting worse.

Hopefully get to see the consultant Next month who is from Taunton hospital, I live in Jersey, he comes over every 2 months (normally) to deal with more complicated surgery, As where the bulge is is not normal surgery procedure I was told. When I get the op I’m not sure when, but I’ve asked if I could be put on their cancellation list. Fingers crossed.

Great to hear it’s been a huge success for you you must have normality back in your life.

The nerve issues is this something that will eventually go or do you have to just live with it.

Thanks for yours and everyone else’s responses.

Take care.

[Krawlins in reply to Jhpc]

I only just saw your response, I do apologise, I wonder how you are getting on now. Have you managed to see the consultant?

My op was in 2012, we’d just had my dear mum’s funeral when my back ‘went’. No one would believe my agony I went to AnE twice, the Drs and I was in constant tears with the pain, still they wanted to send me home, even though it was the dr that sent me. When later my husband dialled 999 for an ambulance because I couldn’t even get out the bed to wee. I wasn’t eating, I was just paralysed in my bed. Finally a few hours after admission I was in my own room and given a bedpan to wee, I suddenly couldn’t go! That’s a red flag, so they then put in a catheter, followed by morphine.

They just kept telling me there were no surgeons in the hospital, that he was on holiday. As soon as he’d seen my mri (which i had to wait days for as i couldn’t lie straight or still for) he declared it an emergency and did it the next day, I went in on 3rd April and op was I think the 12th, home on the 14th and I was later to find out this operation is not in my notes!! My own doctors knew nothing about it taking place!!

I hope you’re feeling ok, it’s a worry now again for ops and procedures with the 2nd lockdown.

Take care, Kay x

[Jhpc in reply to Krawlins]

Well I didn’t get to see the consultant when he came over to Jersey, he was hoping to do a Sunday clinic and fit me in then, but couldn’t set it up.

So I was hugely disappointed as I found out he’s not back in the island till next year.

So I have asked if I can have another epidural to tide me over this period hopefully I get some pain relief from that, it worked last time but only for a few weeks, which would be a huge relief right now. So on waiting list again.

It’s so horrible when your in pain and you have to keep pushing for someone to listen to you and get the pain relief that we need.

Yes I fear backlog for ops is going to get worse as the Covid virus is getting worse again in the UK, NHS staff must be at their wits end in a lot of areas.

You have went through a dreadful experience, so awful for you when you were in such a state, how are you now.

Take care stay safe everyone.

[cuttysark]

You have had great responses but here also is my experience from decompression surgery almost a year ago.

I had severe wear and tear in spine and chronic back pain for decades. I had a neck fusion and disc removed with cage inserted 8 years ago when suddenly 18 months ago I fell and slipped a disc in lower back.

I was on a waiting list for treatment when I developed cauda equina syndrome and was operated on as an emergency last November 2019.

They saved my bladder function and most of the nerve function to my legs by decompressing L 4 to 5 and treating the slipped disc. I did avoid fusion and screws.

It has been a very long haul not helped by a bad fall down the stairs two months later!!

They discovered that physio was actually worsening the pain and I could barely walk for many months.

They thought having a connective tissue disease was making the progress to walking much more difficult.

I persevered with gentle walking, a little every day and took morphine daily to enable me to move.

Gradually over all that time I am now seeing a difference and walking is much easier. I still have sciatica but it is much improved from being total agony and little sleep to 60% improved. I am hopeful I can improve it further.

I know my case is not necessarily what you will have and I don't want to be alarmist but listen to your body after surgery and don't overdo the physio if you feel it is worsening it. They do warn you about scar tissue forming if you do not do enough exercising but I had to do only a little light walking with two sticks but made sure it was every day regularly. I had another MRI two months ago and they are delighted I have no scar tissue.

Also If you are waiting just now as I was, be very wary of any changes to bladder function or any numbness to lower limbs and pelvic area. This could mean cauda equina syndrome where they have to operate within 24 hours. Look it up, it is vitally important it is never missed.

It was my physio who spotted it with me as I didn't know about it.

I was suddenly leaking urine, at other times couldn’t pass water at all, had worsening sciatica down both legs instead of one and numbness to both lower legs. It is actually a medical emergency and a rare occurrence but when I got to neurosurgery there were 4 other patients with it, all young girls working with heavy lifting in care homes. They told me my back degeneration was due to the connective tissue problem all those years, am 67 now!

Sorry this is a long tale but just wanted to warn you about cauda equina and also to take time after the operation. They told me it would take a good year or more to see a difference in mobility but it will happen.

All the best. Hope you hear soon and let us know how you get on. xx

[Jhpc in reply to cuttysark]

You’ve had a lot to put up with,hopefully you will be more or less pain free soon. Anyone whose had neck/back pain knows how painful it can be.

I’ve had neck/back pain on and off for years, neck pain has settled thankfully.

I’ve never had a bulging disc in the lower back before but have one in my neck.

I’m sure it’s L4 L5 for me too. I have read about cauda equina v scary glad you got the op in time, it is a worry.

I’m a bit worried how long I’ll have to wait for op as he has a back log, I’m sure a lot on here are waiting for appointments/ops too.

Thanks for your response and I’ve noted your words about recovery. Wishing you well take care 🤗🤗

[Jhpc]

Well I have two older sisters, one had a disc operation in her neck years ago, my other sister has now just been diagnosed with a compressed disc, so the two of us are waiting on similar ops.

What’s the chance of the three of us having disc problems, my two brothers have joint inflation problems but not disc.