Spinal Fusion

[Four Litre]

sutoka said:

I'm off on Thursday to see my spinal consultant, been waiting 3 year and 4 months in pain, unable to walk properly, unable to lift anything. I'm planning to listen to what he has to say and then sit and wait until I get answers

Best of luck, assuming you've tried all the injections etc

[dreamer75]

Four Litre said:

Thanks for that. The surgeon is highly rated (Stanmore) so I'm ok with his ability, I'm terrified of making things worse. I'm lucky in that Monday-Friday I'm working at my desk with 0 back pain. Come the weekend I try and do something and it comes on as I'm loading up the pressure on the fracture site by standing up. After reading all the literature and reading online it really feels like a roll of the dice as to the outcome. On the positive side I'm relatively fit, slim and a non smoker so have that going for me which I understand helps with the overall operation and healing process.

Edited by Four Litre on Tuesday 8th March 11:43

So difficult isn’t it. For me it was an easy choice because I was debilitated and couldn’t go on with life as it was. At the time I was going down the artificial disc route (in fact there used to be a really good forum called ADR uK which might be worth checking out if it’s still going - not just ADR conversations), then came around from the anaesthetic to be told they couldn’t do the ADR but had fused instead. Roll onto now and apparently fusion is preferred now so perhaps I was lucky !

But I am having to have the same process about a knee op - do it, don’t do it etc., so I know how you feel !

[DuncsGTi]

Four Litre said:

Thanks for that. The surgeon is highly rated (Stanmore) so I'm ok with his ability, I'm terrified of making things worse. I'm lucky in that Monday-Friday I'm working at my desk with 0 back pain. Come the weekend I try and do something and it comes on as I'm loading up the pressure on the fracture site by standing up. After reading all the literature and reading online it really feels like a roll of the dice as to the outcome. On the positive side I'm relatively fit, slim and a non smoker so have that going for me which I understand helps with the overall operation and healing process.

Edited by Four Litre on Tuesday 8th March 11:43

It wouldn't happen to be Mr Baxter would it? If so then the man is a bloody magician!!!!! I'm seeing him in a few weeks for my 12 month review after L4L5 fusion and I am absolutely fixed. The change in my physical health and also my mental well-being since he performed the surgery is absolutely massive. While I appreciate that others will have varying experiences, this surgery gave me my life back.

[sutoka]

Four Litre said:

sutoka said:

I'm off on Thursday to see my spinal consultant, been waiting 3 year and 4 months in pain, unable to walk properly, unable to lift anything. I'm planning to listen to what he has to say and then sit and wait until I get answers

Best of luck, assuming you've tried all the injections etc

Had the epidural steroid injection privately about 2 and a bit years ago at a cost of £700 and it made absolutely no difference whatsoever. I'd had scans on NHS but to had to have private MRI before at £400 and a few more 5 minutes appointments with the consultant at £150 a pop. Even had to pay that after the injection to tell him it didn't work.

This is same one I'm seeing on the NHS and to honest I want answers, pretty reasonable after 3 and a bit years and umpteen MRI, X-Ray, Bone scans and CT that he would know what's going on. Still haven't had any tests for nerve damage and I've had hip pain and sciatica for most of the last few years. Never had it in the 30 years previous until some numpty slammed into me at speed.

I apologise if this sounds negative and cynical but there's a lot of money to be made privately out of someone with an L5S1 spinal injury, black disc, herniated disc and I feel after an 8 month wait on the NHS for a MRI I had little or no choice but to spend thousands going private which a few years on seems like it could have been better spent.

[964Cup]

Four Litre said:

I would appreciate your voices of experience on this...

As a result of getting a second opinion, both surgeons say the only option is L5/S1 fusion. However, one will do from the back, the other from front and back (360). Having read the risk literature they sent me it looks like there's a very good chance of ending up with some form of nerve damage or hideous injury to my bowel etc as they come in from the front. It did mention that I could end up with permanent numbness in a leg which doesn't sound very attractive to me!

I have a bilateral pars fracture that cant be fixed with grade one slippage. I've had it for nearly 30 years but its getting worse and now I cant stand still for more than a minute without it flaring up. If I do literally nothing I'm pain free, if I do anything it will come on. So its either a couch potato (which to me is a nightmare) or risk it all on the dice!

Has anyone got any advice, based on experience.

I had the same fracture, although my L5 had gone into spondylolisthesis (slipped forward). I had a two-level fusion L4-L5-S1 with both ALIF (front) and PLIF (rear) entry. No bowel issues, no lasting nerve issues, 100% recovery. Key things:

1. Get the right surgeons (plural). It's the vascular access surgeon who opens you up, moves your bowel out of the way and (critically) moves the big blood vessels out of the way. Obvs the orthopod also needs to be top notch.
2. Get the bowel prep right; don't stint on the laxatives and don't cheat on the fasting.
3. Be as fit as you possibly can be before you go in, and take the post-op physio more seriously than you have ever taken anything. To give you an idea of what's possible, I had my op at the end of November 2016 and rode Liege-Bastogne-Liege in late April 2017 (that's a 274km bike race if you're not a cyclist). I was 48 at the time.

[Four Litre]

964Cup said:

Four Litre said:

I would appreciate your voices of experience on this...

As a result of getting a second opinion, both surgeons say the only option is L5/S1 fusion. However, one will do from the back, the other from front and back (360). Having read the risk literature they sent me it looks like there's a very good chance of ending up with some form of nerve damage or hideous injury to my bowel etc as they come in from the front. It did mention that I could end up with permanent numbness in a leg which doesn't sound very attractive to me!

I have a bilateral pars fracture that cant be fixed with grade one slippage. I've had it for nearly 30 years but its getting worse and now I cant stand still for more than a minute without it flaring up. If I do literally nothing I'm pain free, if I do anything it will come on. So its either a couch potato (which to me is a nightmare) or risk it all on the dice!

Has anyone got any advice, based on experience.

I had the same fracture, although my L5 had gone into spondylolisthesis (slipped forward). I had a two-level fusion L4-L5-S1 with both ALIF (front) and PLIF (rear) entry. No bowel issues, no lasting nerve issues, 100% recovery. Key things:

1. Get the right surgeons (plural). It's the vascular access surgeon who opens you up, moves your bowel out of the way and (critically) moves the big blood vessels out of the way. Obvs the orthopod also needs to be top notch.
2. Get the bowel prep right; don't stint on the laxatives and don't cheat on the fasting.
3. Be as fit as you possibly can be before you go in, and take the post-op physio more seriously than you have ever taken anything. To give you an idea of what's possible, I had my op at the end of November 2016 and rode Liege-Bastogne-Liege in late April 2017 (that's a 274km bike race if you're not a cyclist). I was 48 at the time.

That's amazing to hear, certainly gives me some hope. I made the mistake of joining the spinal fusion facebook group and jeez, its a horror show! So much that I cancelled my last op date and have sought a second opinion.

I also have slippage, but 'only' grade one, so not too bad as things go. Do you recall how much improvement you made in the first 3 months? I only ask I have a holiday booked which is long haul and don't fancy letting the kids down if I dont need to.

[Four Litre]

DuncsGTi said:

Four Litre said:

Thanks for that. The surgeon is highly rated (Stanmore) so I'm ok with his ability, I'm terrified of making things worse. I'm lucky in that Monday-Friday I'm working at my desk with 0 back pain. Come the weekend I try and do something and it comes on as I'm loading up the pressure on the fracture site by standing up. After reading all the literature and reading online it really feels like a roll of the dice as to the outcome. On the positive side I'm relatively fit, slim and a non smoker so have that going for me which I understand helps with the overall operation and healing process.

Edited by Four Litre on Tuesday 8th March 11:43

It wouldn't happen to be Mr Baxter would it? If so then the man is a bloody magician!!!!! I'm seeing him in a few weeks for my 12 month review after L4L5 fusion and I am absolutely fixed. The change in my physical health and also my mental well-being since he performed the surgery is absolutely massive. While I appreciate that others will have varying experiences, this surgery gave me my life back.

Its Mr Robert Lee, however he has moved on from Stanmore since my last consultation, but comes highly recommended.

[964Cup]

Four Litre said:

That's amazing to hear, certainly gives me some hope. I made the mistake of joining the spinal fusion facebook group and jeez, its a horror show! So much that I cancelled my last op date and have sought a second opinion.

I also have slippage, but 'only' grade one, so not too bad as things go. Do you recall how much improvement you made in the first 3 months? I only ask I have a holiday booked which is long haul and don't fancy letting the kids down if I dont need to.

The TL;DR is that I wouldn't commit to a long-haul flight that soon after. The long version below explains why:

My recovery was initially pretty quick. I was up and about within a week, taking long walks within two weeks and beginning physio. The symptomatic relief from the op was pretty well instant, and pain from the op site itself easily manageable; however ALIF means a serious incision through your abdomen and that takes time to heal and time to rebuild core strength. This is where the physio is so important.

Early follow-up visits were instructive - there were people there younger than me who'd had the same op longer ago who were using walkers and still couldn't tie their own shoelaces, so not everyone has the same experience. The staff were pretty surprised by how fast I was recovering - which to my mind was all about fitness pre-op (depressing how many nurses can't walk up stairs without getting out of breath - climbing and descending a flight of stairs is one of the early recovery tests).

However, I then contracted an infection which took some serious diagnosis to identify. Eventually a PET scan found some blood pooling at the op site, and a course of doxycycline fixed it, but they spent six weeks or so flailing before they worked out what it was and what to do about it which put me back a fair bit - I had very bad night sweats, lost a fair bit of weight and (hilariously?) was instructed to stop taking proper pain relief because one early theory was a morphine allergy.

While I still had the infection, any attempt at proper exercise was hopeless; I got back on the turbo in early Jan - about six weeks post op - but had nothing. Once they'd figured it out and the antibiotics started to work, things got better. I started proper training again towards the end of Feb (so about 12 weeks out), regained full flexibility at the start of March, meaning I could ride my race bike, did my first proper distance mid-March (90k) and first 100 at the end of March.

So, if you assume I lost six weeks to the infection, recovery took just under three months. So you *could* have a smooth ride and be ready for a holiday by then, but if you get any complications you'll need more time.

What I will say is that even when I had the infection and couldn't train properly, I still carried on with all the flexibility physio and still remained mobile and active, including going to work (by tube, not bike). The worst possible thing, in my view, would be to give in to any thoughts of being limited by the op or the recovery; I think some people let themselves become disabled by convincing themselves they can't do things. I haven't given my lower back a single thought since Q2 of 2017.

On the other hand, I've got two failed discs in my neck, so I'm gearing up to repeat the whole experience. Which does not spark joy.

[sutoka]

Went to see my spinal consultant yesterday, he holds the title for the most spinal fusion surgeries in the UK.First thing he did was send me down for another set of X-Rays on my lower back.

Back up and he's had a good look and decided there has been significant change since since the last set over a year ago and with my mobility not improving and nerve pain worse he's recommended and put me on the waiting list for keyhole L5S1 fusion.

Who knows how long the list is but I've been waiting 3 years and 4 months. Potential to go private as in my region they do fusion surgery in private hospitals and you pay the whole amount and then get back 80% from the NHS Trust. I have health insurance but they won't touch spinal surgery with a 40ft barge pole.

[Scrump]

If it is a long wait and you can get away with paying only 20% private fees then get it done (assuming you can afford the 20%).
Shame about the private health, I have been lucky and had all my spinal surgery done privately paid for by my health insurer.

[Four Litre]

964Cup said:

The TL;DR is that I wouldn't commit to a long-haul flight that soon after. The long version below explains why:

My recovery was initially pretty quick. I was up and about within a week, taking long walks within two weeks and beginning physio. The symptomatic relief from the op was pretty well instant, and pain from the op site itself easily manageable; however ALIF means a serious incision through your abdomen and that takes time to heal and time to rebuild core strength. This is where the physio is so important.

Early follow-up visits were instructive - there were people there younger than me who'd had the same op longer ago who were using walkers and still couldn't tie their own shoelaces, so not everyone has the same experience. The staff were pretty surprised by how fast I was recovering - which to my mind was all about fitness pre-op (depressing how many nurses can't walk up stairs without getting out of breath - climbing and descending a flight of stairs is one of the early recovery tests).

However, I then contracted an infection which took some serious diagnosis to identify. Eventually a PET scan found some blood pooling at the op site, and a course of doxycycline fixed it, but they spent six weeks or so flailing before they worked out what it was and what to do about it which put me back a fair bit - I had very bad night sweats, lost a fair bit of weight and (hilariously?) was instructed to stop taking proper pain relief because one early theory was a morphine allergy.

While I still had the infection, any attempt at proper exercise was hopeless; I got back on the turbo in early Jan - about six weeks post op - but had nothing. Once they'd figured it out and the antibiotics started to work, things got better. I started proper training again towards the end of Feb (so about 12 weeks out), regained full flexibility at the start of March, meaning I could ride my race bike, did my first proper distance mid-March (90k) and first 100 at the end of March.

So, if you assume I lost six weeks to the infection, recovery took just under three months. So you *could* have a smooth ride and be ready for a holiday by then, but if you get any complications you'll need more time.

What I will say is that even when I had the infection and couldn't train properly, I still carried on with all the flexibility physio and still remained mobile and active, including going to work (by tube, not bike). The worst possible thing, in my view, would be to give in to any thoughts of being limited by the op or the recovery; I think some people let themselves become disabled by convincing themselves they can't do things. I haven't given my lower back a single thought since Q2 of 2017.

On the other hand, I've got two failed discs in my neck, so I'm gearing up to repeat the whole experience. Which does not spark joy.

Thanks again, great to hear you first hand experience. I’m
determined to make a success of the fusion. I also spoke to surgeon who also said don’t bother with holiday so soon. He's come up with a day in April where he does the front one week and the back the following week. Apparently this is the usual approach ??!

[bigdom]

Four Litre said:

Thanks for that. The surgeon is highly rated (Stanmore) so I'm ok with his ability, I'm terrified of making things worse. I'm lucky in that Monday-Friday I'm working at my desk with 0 back pain. Come the weekend I try and do something and it comes on as I'm loading up the pressure on the fracture site by standing up. After reading all the literature and reading online it really feels like a roll of the dice as to the outcome. On the positive side I'm relatively fit, slim and a non smoker so have that going for me which I understand helps with the overall operation and healing process.

Edited by Four Litre on Tuesday 8th March 11:43

I had spinal surgery at Stanmore in 1989, when just 18. It turned out I have 6 lumbar vertebrae and was missing a disc, it wasn't joined in 3 places, so a little floaty. I'm not sure coming in from the front was a thing back then. A few titanium bits, hip bone inserts, the unnerving pain, and periods of paralysis I'd had in the previous 3 years went away.

Due to my fitness at the time, my recovery was slow as my metabolism was very high, it took 12 months for it to fuse together as expected, so no sport all year. At 21 I prolapsed, if I remember correctly L4-L5. My specialist advised if I continued swimming competitively, I'd be in a wheelchair by my 30's.

Being over 30 years post surgery, for me it's been life changing. I have the occasional niggle with the slipped disc, on twisting activities like cleaning the car, DIY. I use a back brace during these times. If I forget, I just use the drugs, but it takes longer to settle down again as I get older. The Verve were wrong though, they do work!

[Scrump]

Happy Christmas to all the spinal fusion chaps. I hope you are well and recovering.
I have had a bit of a big step forwards in pain relief.
A few months ago I had a medication review and it was suggested I try Amitriptyline as it may reduce the nerve pain.
Wow! I gradually increased my dose and each time I did the nerve pain subsided. Really pleased with it.

[DuncsGTi]

Scrump said:

Happy Christmas to all the spinal fusion chaps. I hope you are well and recovering.
I have had a bit of a big step forwards in pain relief.
A few months ago I had a medication review and it was suggested I try Amitriptyline as it may reduce the nerve pain.
Wow! I gradually increased my dose and each time I did the nerve pain subsided. Really pleased with it.

Great news Scrump. I found Amitriptyline quite good for pain relief but it gave me really funky dreams!!!!

I'm 21 months post fusion now and still symptom free. I get a little stiffness at times if I've pushed myself too hard in the gym or at work but it's never anything too bad.

[DuncsGTi]

Good evening everyone

I've only gone and bloody done it again!!!!!

My L4L5 is still solid and pain free however I had a crash in a motorbike enduro race on Wednesday and broke my neck. Emergency fusion performed C5C6 I think on Thursday morning (it's all a bit hazy at present)

One of the vertebrae dislocated and smashed another, doctor reckons I'm lucky to be alive

[964Cup]

DuncsGTi said:

Good evening everyone

I've only gone and bloody done it again!!!!!

My L4L5 is still solid and pain free however I had a crash in a motorbike enduro race on Wednesday and broke my neck. Emergency fusion performed C5C6 I think on Thursday morning (it's all a bit hazy at present)

One of the vertebrae dislocated and smashed another, doctor reckons I'm lucky to be alive

You poor sod. I have a C6C7 fusion coming up next year, but at least mine's planned. Hope the recovery goes well.

[Gary C]

DuncsGTi said:

Good evening everyone

I've only gone and bloody done it again!!!!!

My L4L5 is still solid and pain free however I had a crash in a motorbike enduro race on Wednesday and broke my neck. Emergency fusion performed C5C6 I think on Thursday morning (it's all a bit hazy at present)

One of the vertebrae dislocated and smashed another, doctor reckons I'm lucky to be alive

!!!!!

Ah, all the best.

Time to give it a rest ?

[DuncsGTi]

964Cup said:

You poor sod. I have a C6C7 fusion coming up next year, but at least mine's planned. Hope the recovery goes well.

Turns out it was C6C7 I had done, when I wrote my post the opioids were in full flow

Gary C said:

!!!!!

Ah, all the best.

Time to give it a rest ?

The bike I crashed only had about 6 hours on the clock, not sure I'm quite ready to give up and get rid yet!!


Recovery seems to be going ok so far. I'm in a collar for the next 5 weeks then start mobilising and attending physio. The only worrying signs are the tingling in my left fingertips and the excriciating left arm/shoulder pain when I wake. Within an hour or so of getting out of bed it eases to managable levels but its horrible first thing.
The surgeon did say that there were large disc fragments on the left side of the spinal cord which he removed so this may explain why that pathway is still irritated and painful.

[Gary C]

Jesus

You must really love it (the bike, not spinal fusion)

[DuncsGTi]

Evening all. My pain has eased off now and I'm in a much better place. Ended up back in hospital for a couple of days while the docs did all sorts of scans and investigation but it was decided it was best to wait a bit longer before going down the route of further surgery.

They've said if the symptoms stay then they'll go in from the back of the neck and remove some of the bone to free up the nerve path but hopefully it won't be needed. I've still got some shoulder pain in the mornings but not unbearable like it was and I still have the tingling in my fingers.

Hoping to be out of the neck brace next week too depending on how my next round of x-rays look. Here's a pic of last week's x-rays showing my latest metal addition to my body!!