Experience of spinal fusion recovery? (ALIF)

[Wishiwasrunning2]

I'm booked in for this surgery.

My DH and I have been invited to a wedding the following weekend. Surgery on the Wednesday, wedding on the Saturday.

He is insisting that he will still attend the wedding (overnight 4hrs away) without me, we have 3DC aged 5-10 and my nephew (18) was going to babysit.

Will I be in a fit state to care for DC and myself with assistance of nephew or is this going to be too difficult? I know it's major surgery, and I'm quite worried about what state I'll be in 3 days after.

Anyone had experience of this?

Can I ask how long it took to get your referral through for the initial consultation and then how long it took to have surgery?

It looks as though I'm in store for a very long wait and I'm struggling to cope with the pain, etc. I was told I'd be marked as urgent but the hospital haven't even got my referral yet.

@LifeBegins I've had 5 years of back pain, but it's been manageable I was still running 10k and half marathons. December it started to get worse but I could still cope over Christmas. Last run in NEw years day, Mid January went totally off the scale, off work for 2 months, huge amounts of medication, two nerve block injections... last one made a difference for 3 days which helped with diagnosis. Booked surgery last week and date is beginning of June. 4 weeks away feels like forever, I'm still trying to work from home but it's so hard.

Sorry, didn't include... self referred to physio in dec and private referral to consultant just before Christmas.

Still taking 6 months to surgery date

I'm coming up to 4 years and my pain has largely been downplayed until now by the GP's. It wasnt until I finally saw a consultant who sent me for an MRI that the problem was found. I just don't know how I can keep going on. It didn't help that the hospital doesn't even have my referral yet.

I've got an appointment at the GP soon as I mentioned to them I was overdosing on paracetamol and had started taking ibuprofen again. It'll be a pain review appointment so hopefully now they understand the problem, I might get some better help.

Sorry to be all doom and gloom. I'm happy to hear you (and the others on this post) are faring better.

My timescale was years of on and off sciatica
January - pain again but felt different. 4 sessions of physio, then she refused treatment and sent me for MRI
February- MRI done and referral
March - second MRI in a&e, stopped work end of March as not coping with pain, moved onto morphine, dihydrocodiene, naproxen, paracetamol and diazepam
April - given op date after I took a cancellation, had pre op
May 10th - threatened to cut own leg off, 3rd MRI, found cauda equina and luckily my op was booked for the next day anyway!
May 11th, 5hr op, discharged 21hrs post op
July 11th - back on a horse

@YesQueen great to hear you were back riding at 2 months, I'd be really happy with that recovery, good work!

Months of pain really do wear you down. I've been completely hopeless at times over the last few months, part of it was Gabapentin. But the thing that really helped was the diagnosis and getting to the point where I was offered a solution. Until then I had a lot of very dark days. No one seemed to be able to help me and the pain was hideous.

@LifeBeginsNow you must not be brave at your appointment. Make a list and tell them exactly how it is impacting your life, work, relationships and emotions. These are the questions they don't ask you, but it's really important to let them know as then they will try and do something about the pain.

@Wishiwasrunning2 definitely it wears you down. By the time they operated I could only walk by dragging one foot, had loss of feeling in my leg and they said around 48hrs before paralysis and loss of bladder control

I was stubborn and walking an hour post op, the surgeon told me to walk to stop scar tissue so I built up to walking 10km, had a few physio sessions and paid for 4 private PT sessions which really helped. I've got loss of feeling in my leg and foot and some back pain but the surgery was never to resolve the back pain, just to stop paralysis and get rid of the leg pain (15mm herniation at L5/S1)

That's great that walking actually helps post op as it's the worst thing at the moment and I would LOVE to go for a walk, can't walk anywhere atm, so painful.

I'm lucky I can access a really good physio, so will do that as soon as I can.

I only have small disc bulges but also unstable spondylolisthesis, hence fusion.

Any other tips welcome!

No bending lifting or twisting. It's amazing how many times you need to bend over when you can't! Learn to brush your teeth and spit without bending over and work our showering/hair washing
Move anything low down to higher up. Easy prep food, stock the freezer. Make sure you can sleep, seriously the GA wiped me out
Think about stuff like doing laundry as you can't really lift wet washing. Changing beds, feeding pets if you have them, no hoovering...
Say yes to people that offer help. I was alone for the op and recovery and it was tough at times

That's great that walking actually helps post op as it's the worst thing at the moment and I would LOVE to go for a walk, can't walk anywhere atm, so painful.

I'm lucky I can access a really good physio, so will do that as soon as I can.

I only have small disc bulges but also unstable spondylolisthesis, hence fusion.

Any other tips welcome!

I can't imagine doing that alone!

I already can't do much around the house so DH is in the routine of doing it now which is good.

Hadn't thought about brushing my teeth! I'm use my knees to bend a lot atm, will that still work?

Have excellent dog walker so she'll be well booked for a few weeks. Then hoping my (very calm dog) will encourage me to get out and walking. He's very patient.

Have planned to fill freezer with easy healthy meals.

Thanks for the tips.

Knees are good! I had to squat as was easier than launching wet food in the tolerant cats bowl

My adult DD had a spinal fusion thirteen weeks ago. She had hardware and screws put in her back and was not allowed to bend lift or turn for twelve weeks. She needed complete care for at least eight weeks and up until recently she still needs some help. Her legs ache by the end of the day and she still has pain in her feet. She was in a lot of pain before her operation and very unwell, but nothing like the nerve pain she experienced after. It was a terrible time for her and we had to get an ambulance a few times as she wasn’t coping with the pain.

She was told it would take two to three weeks for the nerve pain to settle but it took eight weeks. She found a forum for her condition on Facebook and found it invaluable for the support and information she received. Also many other people said their nerve pain stopped around eight weeks, it took months for others and some were still experiencing it a year later.

DD’s operation was a 100% success, she was very lucky. A lot of people go through so much, especially those on waiting lists, DD included, for their operation. The forums are very enlightening and there are people from around the world talking about their experiences.

Cano. Please could you share the name of the Facebook group she found useful?

I'm pleased to hear your DD has made a good recovery, although perhaps not as quick as she hoped.

The Facebook group is Spinal Fusion Successes and Beneficial Back Surgery Pre-Op Support. I hope the forum gives you some good information and good luck OP, I hope it all goes well for you.

@wishiwasrunning2 you are very right. I did play it down quite often. It's because they never look interested. Hardly anyone gave me eye contact and I felt like I needed to rush to get out of their way quickly.

When it was first bad after the baby, I got stuck sitting on the chair in reception and it took me ages to walk down the corridor to the GP. All the while, crying my eyes out. She was very good and caring but I was misdiagnosed and that stuck. Nobody wanted to listen to my symptoms or consider anything else.

For a long time, my mental health has been blamed. I get anxious, I get tense and that's the route of the pain. In actual fact, I've got a problem, it hurts and I tense up.

I really hope I get pushed through quickly as you are all giving me comfort that I might have a better life soon. There's so much I can't do or have to adapt. I haven't slept in my bed for a long time so my husband (although understanding) is suffering. I'm still petrified of an operation though!

I had this done 7 years ago. There's no way you're going to be up to traveling and standing so soon afterwards. I was in a range of excruciating pain for at least a week (serious sciatica, pain at the operation site) and pretty wobbly afterwards - and I was told my operation had been particularly successful.

I nearly fell off my chair at this. I still need help with things 12 years after surgery (and have just knocked back 2 wedding invitations due to the distance involved). The leg pain is mostly gone but my back is weak (discectomy and laminectomy not keyhole) and I get sore hips and butt and even sometimes lower back. Can't sit or walk too long and I am counted as a success story. Nice to hear that others had a better result though and I wish you luck. The younger and fitter you are the better (I was neither).

Me again. Sorry for hijacking your thread OP! I've had a call today and the consultant has looked at my MRI this morning and wants to see me tomorrow.

I'm actually very excited as I can ask some questions and find out more about what's wrong and what the plan will be.

The other side of me is nervous though as I've just jumped an 18 week+ waiting list in the matter of hours.

@LifeBeginsNow that's really good! They rang me and said "we have a cancellation... they don't usually do backs.."
Me "does it get me in the system? Because I'll see the cleaner if it does"

Life, I really hope it's good news, in that they can make a plan to help you. The worst thing is not knowing!

Ha, @yesqueen I feel the same too! Although I think the receptionist was a little confused as I was hesitating. I've been without my work laptop for a week and it arrives tomorrow. I really need to catch up. It wasnt until she said they don't normally do this, I snapped out of it. My back is more important and work will have to wait!

@LifeBeginsNow hope it goes ok today, let us know how you get on.

All done. I'm not having fusion, they are removing a giant tumour in the centre of my spinal cord at L5. Its compressing the nerves and is the reason for my pain.

It's hard to say the cause until they get in there and they also need to send it off to see if its cancerous (unlikely but you never know).

The consultant is going to squeeze me in within a month for an operation. I'm frightened but know I need it (there wasn't an option for anything else) and it'll be amazing to be pain free (hopefully). I still have a lot of questions but his urgency to operate threw me a bit.