Discussion
You sound like me! All or nothing! I had many an argument with my pain management counsellor about "acceptance = giving in" (in my mind - I've since changed my outlook which has helped a lot!) I have given some things up; racing (Caterhams) has had to go, as has karting and snowboarding. But in their place are skiing, flying, and my CBT next month 
I've had to accept I will never be pain free and that there are other issues, but I have made changes that mean life is still full and fun and pain killers are rare and minimal.
Pacing is very important. You only get one chance at this. For reference I had 3 months off work following my fusion, about 6 weeks off after the microdiscectomy the previous year. I probably didn't need the whole 3 months (I work in IT although not office based, so lots of walking/driving/trains/standing around which is the worst for me) but it helped my recovery no end. I had to set alarms and measurements to stop myself doing too much.
Also don't underestimate the impact stress has on pain levels. If your'e worrying and focusing on it, you notice it more.
This is a big surgery and a complex recovery - don't understimate it, don't rush it, but don't make it your life either.
Best wishes
I've had to accept I will never be pain free and that there are other issues, but I have made changes that mean life is still full and fun and pain killers are rare and minimal.Pacing is very important. You only get one chance at this. For reference I had 3 months off work following my fusion, about 6 weeks off after the microdiscectomy the previous year. I probably didn't need the whole 3 months (I work in IT although not office based, so lots of walking/driving/trains/standing around which is the worst for me) but it helped my recovery no end. I had to set alarms and measurements to stop myself doing too much.
Also don't underestimate the impact stress has on pain levels. If your'e worrying and focusing on it, you notice it more.
This is a big surgery and a complex recovery - don't understimate it, don't rush it, but don't make it your life either.
Best wishes
Fingers crossed for you both - how are you both today?! Physio has just suggested I might need L1/2 scanning - she's been treating me for my SI joint which keeps locking up, and leg pain, along with seized back for a few months now - she's concerned it could be an issue which might need surgical intervention. Sounds stupid but I have this principle that as soon as the hospitals get involved, or I have to phone BUPA, then it's seirous. If I can pay out of my pocket for physio and not involve anybody else then it's just a flare up. Really don't need another level to have gone!!!!
@Ructions - I had many a chat about acceptance vs giving in with my pain management psychologist. I was the same as you - the surgery was the light at the end of the tunnel, and post surgery there was no more light. So what then, when there was still significant pain? Got off the Tramadol (watch out for the dependence and phase it out when you get to that stage) and the Gabapentin, but still was almost house bound and unable to function. After a handful of sessions something clicked in my head and I managed to move forwards. I don't like to pick it apart too much in case it undoes the good work tbh, but it helped massively.
@jkh112 - thank you, and it is isn't it! Feeling quite a bit better today/yesterday so fingers crossed. If I've learnt anything it's how complex bodies are, and how things you think can't possibly be associated, actually are! Pain in your toe? Oh that's probably your shoulder
@Sticks - I find the MRIs very soothing and usually have a little snooze! Something about the noise makes me feel like they're a living breathing animal! 2 spine surgeries, lots of scans and various other injuries requiring scans, mean I've been in them a few times !
@jkh112 - thank you, and it is isn't it! Feeling quite a bit better today/yesterday so fingers crossed. If I've learnt anything it's how complex bodies are, and how things you think can't possibly be associated, actually are! Pain in your toe? Oh that's probably your shoulder
@Sticks - I find the MRIs very soothing and usually have a little snooze! Something about the noise makes me feel like they're a living breathing animal! 2 spine surgeries, lots of scans and various other injuries requiring scans, mean I've been in them a few times !
Ructions said:
I've only had one appointment with the pain management psychologist, I'm not due to see her again until 6-9 months after surgery, but I may arrange something after the injections on Wednesday, they haven't worked in the past, but we are now trying them in a different area. At the minute it feels like I am more of a customer than a patient, if that makes sense.
Tramadol isn't really an issue, I'm now on a lower dose and its now an all in one tablet with paracetamol and the anti inflammatories have made a big difference, but the side effects are weight gain, a hell of a lot over the last ten days, but I think most of it is water retention.
Not sure where you're based, but the lady I saw now works out of Guildford I think. I can send you her details if that's helpful. I seem to remember it was extortionately expensive, but in terms of life change it has been without comparison.Tramadol isn't really an issue, I'm now on a lower dose and its now an all in one tablet with paracetamol and the anti inflammatories have made a big difference, but the side effects are weight gain, a hell of a lot over the last ten days, but I think most of it is water retention.
Physio now believes it's not a L1/2 issue (PHEW) but for some reason all the muscles on my right side core are spasm'd / seized and we just can't get them to release. My ribs, my back, my stomach, my side, and then down to my knee. V odd. However the good news is, I've now had 2 weeks without the SI seizing up
What have I changed? My home office setup (ditched the second screen which I kept twisting to look at), new mattress (AMAZING), weekly pilates class (I had got lazy) and stretching religiously every day (while other half makes dinner - that's love!). Even managed 3 bike rides (I was cycling 2-3 times/week until about a year ago) which is fab. Now to figure out why everything's seizing up!Pain management stuff isn't cheap - I ended up with a counsellor who was incredible, and was the approach before trying other drugs and treatments.
I have heard that lumbar stuff is worse to recover from than cervical, but having only had lumbar I don't know. It did take me a very long time to recover though - 3 months off work and the improvements carried on for a while, accelerated by the counselling.
Have they said what's causing the pain, I can't remember?
There's a forum called ADR UK (Artificial Disc Replacement) if you google for it. I don't go there anymore because it reminds me of bad times and people in bad ways, but they do have some good advice and information about treatments - it's not only for people who have had or may have disc replacements. Might be worth a look? Don't get dragged down by it though.
I have heard that lumbar stuff is worse to recover from than cervical, but having only had lumbar I don't know. It did take me a very long time to recover though - 3 months off work and the improvements carried on for a while, accelerated by the counselling.
Have they said what's causing the pain, I can't remember?
There's a forum called ADR UK (Artificial Disc Replacement) if you google for it. I don't go there anymore because it reminds me of bad times and people in bad ways, but they do have some good advice and information about treatments - it's not only for people who have had or may have disc replacements. Might be worth a look? Don't get dragged down by it though.
Ructions said:
They don’t seem to know what is causing the pain, scans were ok according to the Neurosurgeon, though there was a lot of inflammation, but a course of anti inflammatories did help. I’m in too much pain for physio, though I have been told to give Yoga a go. Walking, without the dog, helps, but it has to be flat, even ground and although I was regularly walking between 10 and 20k previously I have to do much less now. I’d really like to be well enough to get back to the gym, maybe sometime in the new year.
I’ll have a look at that forum and hope both of you are making good progress.
It depends on the physio - mine worked in conjunction with the consultant and did everything from acupuncture, to gentle muscle release, to creating an exercise and stretching plan, to quite vigorous and painful "physio" as time went on.I’ll have a look at that forum and hope both of you are making good progress.
Ruction the hardest thing in the world is not overdoing it. I'm an all or nothing person myself (probably like you) which sends me into a dark place if things aren't recovering at the rate I want them to. It can take a very long time to recover and things may never be perfect, so be patient and try hard to pace yourself. And try to remember where you were 2 weeks ago and note the improvements - that can help.
I know how you feel! Allegedly my residual pain is caused by facet issues (I'm missing a facet on one side, so I'm not sure about that diagnosis!) I think a lot of medicine at this stage is a process of elimination sadly. When I'm working with the physio it seems to be the same.
So if that surgery is about injecting a disc, which disc do they say is causing the issue? Given you're fused... What does the updated MRI show - does it show a disc problem?
So if that surgery is about injecting a disc, which disc do they say is causing the issue? Given you're fused... What does the updated MRI show - does it show a disc problem?
Well it never went away. Went through a very low patch post-fusion as I thought it was the light at the end of the tunnel. Unfortunately a lot of damage had been done to the vertebrae (rubbing on each other as the disc had collapsed so much) that it wasn't simple. The pain didn't go completely, and I ended up referred to the pain management clinic. Who suggested CBT counselling before trying more drugs or possibly surgery - the CBT transformed my life.
I was pretty "normal" for quite a while, but the last 12 months I've had related issues with thoracic and hip. My issue is I'm hypermobile and my body just bends - joints do too much work and compensate for other joints, and cause issues etc. etc. But I don't know when it's bending the wrong way!
But life is relatively normal; I've accepted that standing and long walks are a nono - I can do about 45 mins/hour walking, but standing at a trade show or something wipes me out for a couple of weeks. Cycling was going well (road & mountain) but it's causing hip issues at the moment. Gave up snowboarding but took up skiing. Had to give up racing (Caterhams) but took up flying. Just got my motorbike license (got my first bike on Saturday ). It seems to be a matter of finding things which work.
If I can sort the current problem (right side of my back goes into spasm which locks my SI joint in the hip, which in turn causes knee and other leg issues) then I'll be as well as I've ever been really !
It's a horrible process, surgery is pretty barbaric really !
I was pretty "normal" for quite a while, but the last 12 months I've had related issues with thoracic and hip. My issue is I'm hypermobile and my body just bends - joints do too much work and compensate for other joints, and cause issues etc. etc. But I don't know when it's bending the wrong way!
But life is relatively normal; I've accepted that standing and long walks are a nono - I can do about 45 mins/hour walking, but standing at a trade show or something wipes me out for a couple of weeks. Cycling was going well (road & mountain) but it's causing hip issues at the moment. Gave up snowboarding but took up skiing. Had to give up racing (Caterhams) but took up flying. Just got my motorbike license (got my first bike on Saturday
). It seems to be a matter of finding things which work.If I can sort the current problem (right side of my back goes into spasm which locks my SI joint in the hip, which in turn causes knee and other leg issues) then I'll be as well as I've ever been really !
It's a horrible process, surgery is pretty barbaric really !
Ructions said:
Had a visit with my pain management consultant last week and he seems very pleased with my recovery and has allowed me to start physio. Consultant doesn't foresee any more procedures, so after three years, three major surgeries, roughly ten sets of pain killing injections and a couple of rhizotomies I may finally be on the road to recovery. I'm down to one tablet a day, but I am finding it difficult to stop them completely. Not just because I am still in some pain, but I think I may actually be slightly dependent on them. I managed three days with no medication and it wasn't pretty.
Physio went well and I am definitely moving much better after it. I know there will be set backs along the way, but I am finally moving in the right direction. Hope everyone else is doing well and are as pain free as is possible.
If it's Tramadol, you can get water soluble tablets, which make it easier to cut down by part of a tablet at a time. My GP didn't know they existed - the pharmacist suggested them to me when I told her about the withdrawal issues. Then you can ease back from even the 1 tablet a bit at a time.Physio went well and I am definitely moving much better after it. I know there will be set backs along the way, but I am finally moving in the right direction. Hope everyone else is doing well and are as pain free as is possible.
I never had the final scan to prove complete fusion (used the insurance to pay for pain management clinic), but I remember at the time reading that it can be 18 months before these things are solid and recovered.
I did a lot of reading on bone growth at the time too - all I can really remember is that diet coke/coke (that coke fizzy drink stuff) is really bad for bone growth, so avoid that ! And smoking. Amazing stats on that !
I did a lot of reading on bone growth at the time too - all I can really remember is that diet coke/coke (that coke fizzy drink stuff) is really bad for bone growth, so avoid that ! And smoking. Amazing stats on that !
That's great news, now don't overdo it! The mental side is really important. When my op didn't cure the pain I was referred to pain management clinic. I expected yet more drugs, but the doc actually suggested CBT counselling first. It transformed my life. Taught my to turn the dial down on the pain so it's background noise, and to change my attitude.
A basic example; "Oh I can't go to the pub with my mates because I can't stand for more than 10 mins" into "Yes I can go to the pub, but can we go to one which has seats"
A basic example; "Oh I can't go to the pub with my mates because I can't stand for more than 10 mins" into "Yes I can go to the pub, but can we go to one which has seats"
I had my fusion at about 37 I think - personally if the pain is there, I wouldn't let age be a barrier. I wasted my entire 30's with back pain and problems and wish I'd had surgery earlier so I could've had the benefit of it !!! I'm 42 now....
As for how I'm doing, seeing a new physio which is going well. Back fusion related issues are pretty much gone I think, or at least I pay little attention to them; one sweaty foot, one dry foot (post surgery), and the odd weird thing. New physio has diagnosed a bit of nerve tethering possibly due to scar tissue but some simple exercises seem to be helping that. Mostly I'm having hip issues which may or may not be related to the original back problems (one very weak leg and muscle wastage which is causing issues), but not sure yet.
Glad everybody's doing well! I can relate to the Tramadol. I didn't understand about coming off it slowly so just stopped. The sweat was like having got out of a bath, within seconds of drying off I was soaked again. Then everything ached to the point I couldn't stay still. Then I decided the answer was simple - I'd just kill myself. No drama or emotion, just a clear course of action. Thankfully my partner realised it was the Tramadol, took a tablet, felt better and stopped sweating. Then came off it slowly !!!!!!!!! Would avoid it at all costs if I could in the future.
As for how I'm doing, seeing a new physio which is going well. Back fusion related issues are pretty much gone I think, or at least I pay little attention to them; one sweaty foot, one dry foot (post surgery), and the odd weird thing. New physio has diagnosed a bit of nerve tethering possibly due to scar tissue but some simple exercises seem to be helping that. Mostly I'm having hip issues which may or may not be related to the original back problems (one very weak leg and muscle wastage which is causing issues), but not sure yet.
Glad everybody's doing well! I can relate to the Tramadol. I didn't understand about coming off it slowly so just stopped. The sweat was like having got out of a bath, within seconds of drying off I was soaked again. Then everything ached to the point I couldn't stay still. Then I decided the answer was simple - I'd just kill myself. No drama or emotion, just a clear course of action. Thankfully my partner realised it was the Tramadol, took a tablet, felt better and stopped sweating. Then came off it slowly !!!!!!!!! Would avoid it at all costs if I could in the future.
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