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Chronic pain

Herniated disc - awaiting surgery - timescale advice

6 replies

HarrietsweetHarriet · 06/08/2021 10:15

I know from previous threads that many of you suffer from back/ spinal issues. Firstly can I send all love and support for the excruciating pain I know you have experienced/ are experiencing.
After a recent spell in hospital (A&E admission, 3 days in hospital (UK) while they did scans and xrays), I'm told I have a serious herniation ( plus other gen. Age- related wear and tear , dessication etc).
I've got to have a section shaved off my disc which will, I think, let the jelly stuff move back into place and relieve the pressure on the nerve, thus stopping the leg pain (sciatica). They couldn't do the op then and there due to waiting list and wouldn't be fair for me to just jump the queue. So they are saying October probably although I don't have an exact date yet.
For anyone in a similar position who is now, or has gone through this, may I ask a few questions?
For the first 2 weeks after hospital release I could only move on crutches between bedroom and bathroom (fortunately on the same floor). Now a little further as in occasionally going downstairs and the odd little walk with crutches in the garden.
How have you coped in terms of moving around? I am scared to do too much but equally scared to do too little. I can feel my left leg seizing up and it's becoming increasingly difficult to get my left heel on the ground.
When they say October for the op, is this realistic or do they give an optimistic early date when really it could be much later? ( Absolutely no diss intended here on the NHS, I know how stretched they are and how bloody wonderful 99% of them were in the hospital except the top consultant himself..but I will leave that for another time).
How do you cope with the depressive feelings in the meantime of feeling useless and a burden on your family? How much of these feelings are the real 'you' and how much are down to the meds? How do you cope with normal life going on around you whilst having to spend 23 hours a day flat on your back?
I'm looking at 5 months (started June) plus of being on a cocktail of meds including morphine and diazepam. For someone who normally takes a paracetamol as a last resort,this terrifies me. I'm worried about the long-term effects of the drugs both physically and mentally. I'd love to hear others' experiences.
Concentration- so so hard! I can't even read a book. I feel my mind is turning to mush. I'm guessing it's the morphine which makes me very sleepy and a bit disoriented.
How long have you had to wait following diagnosis, MRI etc to actually receive your op date? think having a date in the diary would give me a goal and create a focus and a 'count down'.
Having been made redundant I was supposed to be job hunting but all of that's on hold for now.
I'm normally really a very active person, lots of yoga, swimming, hill walking etc. I'm terrified as to whether I will ever be able to do these things to the same level again.
Oh and we just moved house before this happened, 300 miles away from family and friends, to the wilds of Wales, for new adventures etc. Hello irony.
Sorry this is a long post, trying to get it all out there in one go.
I'd just be grateful for your experiences, if you're willing to share, to give me some hope. Because right now I just feel broken, physically and mentally. At least the pain is under control so I don't have to deal with that aspect. I am eternally grateful for that.
Thank you for reading xx

OP posts:

Akire · 06/08/2021 12:04

Hey sounds rough indeed. Long term disabled and chronic illness myself so I know the shock of suddenly being able to do so little and life plans going out of the window. I live alone so not have the burden side of things but equally if I can’t move no one is there get me drink or pick things up. Sorting and paying for social care is whole new level
Of rubbish you don’t need in your life!

Do you have kids? Or more grown age? Don’t dish what things you can still do. For example on line shops or meal plan and general life admin while flat on your back. I know not some as getting up and doing things but it’s still important work.

Can you sit? How about a wheelchair so you can sit in different part of the house and garden without the effort of walking there. If just moving few steps might set off flare then understand feeling like don’t want to do it. Hopefully when you do have your op you can have more realistic outlook of the future. Which I really hope will be miles better for you.


GeidiPrimes · 06/08/2021 13:59

Hi OP, I think I had about 3 months after diagnosis, so the time frame sounds realistic enough. Drugs helped (gabapentin) during the wait.

Complete recovery after surgery, no pain/limited ability whatsoever now. I found pilates really helpful with core strength after.


HarrietsweetHarriet · 07/08/2021 21:52

Thank you both for taking the time to respond. DD is grown so it's just me and DH. Wheelchair I don't think will help as sitting is v painful for more than a few mins. Geidi - I started in April on Gabapentin but was changed to Pregabalin by hospital when I was admitted in June. On a cocktail of 6 meds plus senna, lactulose abd prunes! The constipation is something else and could be a whole thread in itself. At least we can laugh about that....and the raucous wind! Reassuring to hear that October may be realistic and that it's likely to be positive outcome ultimately. Everything crossed. Thank you both x

OP posts:

HarrietsweetHarriet · 31/10/2021 20:20

Just updating on this and after a little more advice.
I'm 3 weeks post-surgery on the disc and weaning myself off the opiods but generally feeling very 'down. The pain is minimal for which I'm grateful beyond words.
But I feel - the only way to describe it - broken.
I feel like I've been put back together but in an order I don't understand...if that makes any sense.
Is it unreasonable that I feel deeply traumatised by the excruciating pain I experienced over the last few months?
I don't feel like 'me' any more.
Is this the result of being on the drugs or coming off the drugs...or a bit of both?
I'm now taking basic codeine for the residual post-op pain and Diazepam to help with low mood.
Some days, actually most days, it's hard to even get out of bed.
I have another 11 weeks of post-op 'recovery period' so gradually doing a little more and building up my strength but no activities or sports until January at least.
At some point I have to start job hunting again but the idea fills me with terror as I've lost all my confidence. I haven't been able to drive since April and the idea of getting behind the wheel also fills me with horror. My anxiety levels are through the roof. On top of this are dealing with several family bereavements and and a house move 5 hours away from friends and family.
I feel lost and don't know how to start putting myself back together.
If anyone has been through similar situations I'd be so grateful if you'd share your experience and advice on how to come out of this dark place . I look at old pictures of myself and I don't recognise the woman I used to be, neither can I imagine how I ever managed to hold down a very demanding job.

OP posts:

JazzHandsYeah · 14/11/2021 07:08

Hello OP
I could’ve written your post myself, and wanted to let you know you’re not on your own!
I had a laminectomy and discectomy a few years ago, they shaved off the two prolapsed discs and removed a piece of vertebrae to release the nerve.
Everything you describe is completely normal. The general anaesthetic takes its toll (emotionally) and it was some months before I was feeling anywhere near ‘normal’.
You’ve been through a big operation on one of the most important parts of the body, it does take time to heal, both physically and emotionally.

Unfortunately my discs prolapsed again just 7 days after surgery, so I’ve had another couple of ops since then.
Really hoping things improve for you, I know all too well what long term chronic pain does to you, it’s just awful. feel free to DM me, and good luck with your recovery xx


PragmaticWench · 14/11/2021 07:22

Just seen this and wanted to offer support, I completely understand the feeling of not being the same person. I didn't have surgery but the second herniation had spinal injections as the thought of months of agony again just terrified me.

I've been left with permanent nerve damage but pilates and physio is helping. It took quite a while to get over it all emotionally, you've been through a really awful pain, physical and emotional, over a lengthy period of time. That's tough!

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