Anyone here had Spinal fusion

As5567

My surgeon has now decided that I need a spinal fusion for L4 L5 and S1, I wasn't given too much information about the operation its self because I'm still not clinically well enough to have the operation yet, they want other things to heal first and ideally for me to lose some weight before and try to at least reduce the pred somewhat.

It would be helpful if anyone could share their experiences with me, I understand that it is a fairly big decision to make having the fusion done and from what I have been reading online it can be a very long recovery process.

Thanks for reading.

barbara12

Sorry I cant help, I am down for a laminectomy but I am still thinking about it..some surgeons prefer this to fusion..but I am doing my homework on all of them..hope someone comes along with some answers for you..

stickywicket

I haven't but you'll find some former posts on fusions (alas, of all kind) here http://arthritiscareforum.org.uk/search.php?keywords=spinal+fusion&terms=all&author=&sc=1&sf=all&sk=t&sd=d&sr=posts&st=0&ch=300&t=0&submit=Search I see 'frogmella' has had a couple. Why not PM here?

As5567

Sorry for the slow reply.

Hi Barbara12, that type of operation my surgeon thinks will just be a short term fix and not a long term, ideally I want this to be the one and only big operation for at least the next 10+. I'm glad to hear you're doing your homework on this, it seems a big decision to make and a rather complex and sometimes long recovery process. I hope what ever you decide goes well.

Thanks for the link Stickywicket, for some reason none of the blue buttons such as "search" "members" etc don't seem to work for me, thank you very much for posting a link it has been very helpful!

frogmella

It is true! I have had two fusions. First was L5S1 and the second was L4L5. I had a bad experience with the first but a fantastic result with the second. I am more than happy to tell you anything you want to know. Unfortunately, after the disaster the first time, I became quite an expert on all things spinal so feel free to ask anything. PM me if you prefer?

As5567

My main concern is being left worse off after having the operation, which I have been told is possible. The main thing I want is to be able to sit down without extreme buttock pain.

How did you find the recovery process? I have been reading that it can be long and sometimes rather painful, the pain part won't put me off but a long recovery process might, but I guess the more I know before I make a decision the more I can prepare for things before hand.

If you don't mind me asking what went wrong the first time and what was different the second time? I have forgot the name of another operation that's possible to try before (they take out a small section of bone rather than fuse bone...or something along those lines) but my surgeon says this will just be a short term fix which isn't what I'm looking for, I feel in my situation I'd be better off getting things over and done with rather than having a smaller procedure and then having to go through the fusion anyway in a couple of years time.

frogmella

The first fusion I had was for a prolapsed disc (sometimes called a slipped disc) at L5S1. This is the sort where you might have a discectomy which is where the protruding piece of disc is trimmed away so removing the pressure on the nerve and so removing your pain. I went straight for fusion as my disc was pretty ruined. In hindsight it is at this point that a second opinion might have been useful. Anyway I had the fusion at that level but developed a post op infection that wasn't treated very well. It took 6 weeks for the incision to heal and I leaked loads of fluid for 4 weeks. Enough to run down my legs, I couldn't get dressed because I just ended up soaked. The main problem though was that a deep seated infection developed - bacteria love metal - and about 10months post op my back started leaking again. I had one heck of a battle with my then surgeon. He never really thought I had a proper infection despite the recurrence of my symptoms periodically. It took nearly two years fight before he finally took the infected hardware out. During this time I was sort of better but also often a lot worse.
After that I thought I should get better but didn't. In the end I gave up on my surgeon and found someone else. He diagnosed facet joint arthritis at L4L5. The best diagnostic tool was an injection that removed my symptoms. He recommended fusion at that level and I had it done two years ago this month. This time my recovery was how it should have been first time. If I had known then what I know now I would have made a much bigger song and dance. I really know things weren't right the first time but no one would listen.
Anyhow, this op has given me my life back. I am 100% better.
As for recovery - with no complications took 12 weeks off work and then went back. Would have been phased but I was very part time. Recovery is frustrating at times but this time around I had no real pain. I came home only on paracetamol and the only time I have taken anything stronger since was for a really bad earache! I was back in the pool after 5 weeks, walking from my first day home. Build up slow. No physio for six weeks. After six months I was free to swim as far as I wanted and now I swim many miles a week. Last year I went back up on the fells walking.
If I were you I would have questions for the surgeon. I would ask if he intends to use prophylactic antibiotics (the correct answer is yes, infections are hard to shift better safe than sorry), how long until you can get the wound wet (again the correct answer is about 10 days, I learnt that this is probably one of the reasons for my infection - I was encouraged to shower far too early), ask how many operations have gone "wrong" and what has been done to fix them.
It is a hard decision to make but for me I knew life couldn't get much worse even if it went wrong. I think you need to get to that sort of stage to do it!

As5567

Sounds like you really have had a tough time but its also great to hear you have had a good outcome even after things had gone wrong. I can't imagine how frustrating the first operation would have been! For months and months I have been at breaking point now with the amount of pain and muscle spasms I get, I cannot sit for anything more than 5 minutes without having extreme pain and muscle spams in my lower back/buttock area, when I then lay on my side after around 20 minutes the muscle spasms then start again in my lower and mid back, the only way I can get some sort of rest from the muscle spasms is by laying in my bed slouched with 6 pillows behind my back, but even in this position I still get the constant buttock pain not as bad as when I'm sitting but it's still there in the background constantly nagging. Eventually when laying down I will get muscle spasms, maybe after 1-2 hours which is really frustrating.

I did have a decompression performed a few weeks ago which "tricked" me into thinking it fixed a lot more than it actually had. The operation was a success and has got rid of most of the muscle spasms which were at one point making it extremely hard for me to breath but for some strange reason for about 2 weeks post op I was beginning to actually feel good which was nice to have a break from the constant pain.

I'm fairly confident that just going ahead and accepting the fusion is going to be my best option, I can't see how things could get much worse. Because this will be my 3rd operation and 3rd general antithetic in less than 6 months my surgeon ideally wants me to lose some weight, wait until other wounds heal from another operation and try to come off the pred, I suspect this is to minimise the infection risk, after reading what happened to you the first time round it now makes more sense to be as healthy as possible before having this done.

frogmella

Oh yes, it is a good idea to get in the best shape you can. Infection is the worst thing. I wish you the best of luck with it all - it sounds like you need it. Feel free to ask anything any time.

mermaid

Hi there,

Just wanted to give you a few words of encouragement regarding spinal fusion.

I have had 3 cervical spine fusions which of course is a different area of the spine to yours, but the process is similar and my outcome has been good. The operations were done to prevent matters from becoming worse and stabilising the spine and protecting the spinal cord. The ops were successful and I was very grateful to my very skilled neurosurgeon.

Recovery can take a while,, but starts from day 1 after the op. Pain relief was good.

The girl in the next bed to mine had lumbar spine fusions and was making a good recovery too. Neurosurgeons don't undertake these ops unless they feel they are really necessary.

Unfortunately I have recently fractured my mid and lower back in 5 places due to severe osteoporosis and no surgery can help that, I wish it could!

I haven't posted for ages and want to thank all the lovely people who posted and supported me around the time of my last fusion, I was very touched by your kindness. This forum is one of the most supportive I have seen and I hope everyone benefits from your kindness and sharing of experiences, it really helps!

xxx

elnafinn

Hi Mermaid

I remember you well, from when I underwent a spinal fusion at the neck end in 2012 if I remember correctly without looking at my notes. You helped me immensely with your support and knowledge.

I am sorry to hear about your recent fractures due to severe osteoporosis. That must be very painful and debilitating. I hope given time, the pain will ease for you.

I have been diagnosed with OP and am due another dexa next week, the last one being three years ago. I am taking Strontium Ranelate and I have no problem with it my GP has written to an endocrinologist for advice as I fear he would like to stop prescribing it for me. The endo has suggested another Dexa which has been arranged and then wants a full history of me and my family. I wait and see what the outcome will be......

I shall fight to stay on SR as I cannot take AA and I do not wish to have injections as I already suffer enough joint pain and cannot bear to risk getting more joint pain as a result of injections as this is a possible side effect.

I wish you well, Mermaid,

Elna

Cariad71

Sorry as5567, I don't have any advice on this, but just wanted to say I'm sorry to see you've been really suffering. We had a chat a while ago now as we used to be under the same consultant. Really hope you get a bit of luck soon x

mermaid

Hello Elna,

Don't want to hijack this post but thank you so much for your thoughts and good wishes.

I wish you luck for your Dexa scan next week - fingers crossed for the results.

I am going in for an infusion of Pamidronate to help heal the fractures and treat the osteoporosis next week. I was on Denusomab 6 monthly injections for the last 3 years and before that Strontium Ranelate which suited me too. Some GPs have concerns about heart problems for some patients on S Ranelate (like Diclofenac which has been taken off my repeat prescription, been on it for 30 years!) Hope you get the drug that suits you, it's so important.

Hope everyone is doing as well as possible this rainy Saturday.

Best Wishes
xx