Discussion
dreamer75 said:
Yes it's special isn't it 
Obviously I'm not a doc and this is just what worked for me - we're all different! I've had to learn different walking techniques and I still do exercises and stretches most days. Don't panic if the pain doesn't go away. Also don't panic if you get other weird pains. I had to go on Gabapentin after I got home due to strange nerve pains which felt like my leg was in a vice. They did stop though. I just put it down to post op trauma, given the amount of wiggle and jiggle that had gone on in my back! That plus being stretched a bit. I had one hot dry foot and one cold sweaty one, and a section of my leg which felt burnt. It all calmed down though so don't panic !
I'm getting some odd pains in my left leg, the left leg was the good one before the op. Leg feels numb at times. Getting the staples out on Monday and will have a word with the doc then. Still taking some pain meds but the pain is much, much less than it was. Back feels oddly uncomfortable at times.Obviously I'm not a doc and this is just what worked for me - we're all different! I've had to learn different walking techniques and I still do exercises and stretches most days. Don't panic if the pain doesn't go away. Also don't panic if you get other weird pains. I had to go on Gabapentin after I got home due to strange nerve pains which felt like my leg was in a vice. They did stop though. I just put it down to post op trauma, given the amount of wiggle and jiggle that had gone on in my back! That plus being stretched a bit. I had one hot dry foot and one cold sweaty one, and a section of my leg which felt burnt. It all calmed down though so don't panic !
Just updating this for my own records, but recovery isn't going to plan and the consultant, who I had a previous, similar op with, is being quite dismissive. Though I am now booked in for further scans as he thinks one of the screws may be pressing on a nerve.
Before the op I was walking at least 10km a day, now I am probably only able to walk a couple of times a week and even then its a couple of kms at best.
Pain in the right side has decreased, sometimes significantly, other times only just, but I now have severe pain in the left lower back, radiating into the left leg, particularly bad at the knee.
Consultant now wants to start with further injections into my left lumbar region, but I'm not keen as they didn't really work on the other side, hence the surgery. As things stand, I really regret having surgery, I am in more pain than ever, though the pain is in a different area and my mobility is now severely limited. Obviously my planned return to work is now on hold.
I suppose writing this at 3am means that my sleep pattern isn't exactly normal either. Cutting down on the analgesics hasn't been a bundle of laughs either.
No pain, no gain, me arse.
Before the op I was walking at least 10km a day, now I am probably only able to walk a couple of times a week and even then its a couple of kms at best.
Pain in the right side has decreased, sometimes significantly, other times only just, but I now have severe pain in the left lower back, radiating into the left leg, particularly bad at the knee.
Consultant now wants to start with further injections into my left lumbar region, but I'm not keen as they didn't really work on the other side, hence the surgery. As things stand, I really regret having surgery, I am in more pain than ever, though the pain is in a different area and my mobility is now severely limited. Obviously my planned return to work is now on hold.
I suppose writing this at 3am means that my sleep pattern isn't exactly normal either. Cutting down on the analgesics hasn't been a bundle of laughs either.
No pain, no gain, me arse.
Difficult as it is, try to keep a positive attitude. Hopefully the scan will show something which can be rectified - when's it booked in for?
As for the walking - I had to build up slowly over a long period. And by slowly I mean starting by walking (slowly and with someone to catch me if I fell) to the end of the road and back. I fact I think I didn't even get that far at first. And under strict instructions not to increase by more than a certain % each time. It took me a long time to get back to walking and even now I don't walk properly (years later).
Have you got a good physio who knows exactly what's been done and why? Mine has been a lifesaver - very much part of the "keep dreamer moving team" - with good knowledge about what's been done, she's been able to help me along the process in conjunction with what surgeons and other consultants have done. Anything from acupuncture to massage, to strengthening exercises, to infrared, to all sorts of stretches, even looking at my car, bike and desk to make sure they aren't contributing to issues.
It's only 2 months since the op - it's early days still. And no, coming off the painkillers wasn't fun at all - went cold turkey off the tramadol initially and that was horrific. Had to go back on and get water soluble Tramadol so I could wean off slowly - GP didn't know water soluble existed btw, the pharmacist told me, so if your'e still struggling with that try the water soluble and a slow withdrawal!
As for the walking - I had to build up slowly over a long period. And by slowly I mean starting by walking (slowly and with someone to catch me if I fell) to the end of the road and back. I fact I think I didn't even get that far at first. And under strict instructions not to increase by more than a certain % each time. It took me a long time to get back to walking and even now I don't walk properly (years later).
Have you got a good physio who knows exactly what's been done and why? Mine has been a lifesaver - very much part of the "keep dreamer moving team" - with good knowledge about what's been done, she's been able to help me along the process in conjunction with what surgeons and other consultants have done. Anything from acupuncture to massage, to strengthening exercises, to infrared, to all sorts of stretches, even looking at my car, bike and desk to make sure they aren't contributing to issues.
It's only 2 months since the op - it's early days still. And no, coming off the painkillers wasn't fun at all - went cold turkey off the tramadol initially and that was horrific. Had to go back on and get water soluble Tramadol so I could wean off slowly - GP didn't know water soluble existed btw, the pharmacist told me, so if your'e still struggling with that try the water soluble and a slow withdrawal!
Scan is booked for Tuesday morning, trying to keep positive, but it can be difficult when I am in so much pain at times. Might sound strange, but I prefer the pain to the effect of too many analgesics.
I was due to start with an excellent physio a couple of weeks ago, but the neurosurgeon has advised me not to, until this current issue is resolved. I am able to walk a few kms on the beach, but at times the left leg can just give out completely and without warning, though it is fine again within a few moments, its a strange one, its like some sort of signal isn't getting to the knee at times. Thankfully the old walking poles, from my hill walking days are finally seeing some use, but I feel so guilty not being able to walk the dog. Having a very boisterous Doberman really doesn't help, but he is just too strong for me at the minute, thats not to say he isn't good on the lead, but the chances of seeing a cat, or a labrador, for some reason he hates labradors, are too great for me to take a chance with him, but I still feel guilty when I'm unable to walk him.
My GP's attitude is to throw as many drugs at the problem as he thinks necessary and believe me he will prescribe anything, but we'll know more after the scan.
I was due to start with an excellent physio a couple of weeks ago, but the neurosurgeon has advised me not to, until this current issue is resolved. I am able to walk a few kms on the beach, but at times the left leg can just give out completely and without warning, though it is fine again within a few moments, its a strange one, its like some sort of signal isn't getting to the knee at times. Thankfully the old walking poles, from my hill walking days are finally seeing some use, but I feel so guilty not being able to walk the dog. Having a very boisterous Doberman really doesn't help, but he is just too strong for me at the minute, thats not to say he isn't good on the lead, but the chances of seeing a cat, or a labrador, for some reason he hates labradors, are too great for me to take a chance with him, but I still feel guilty when I'm unable to walk him.
My GP's attitude is to throw as many drugs at the problem as he thinks necessary and believe me he will prescribe anything, but we'll know more after the scan.
I can't walk more than a couple of kms now, 3-4 years after the op, just to put that distance into perspective......
I know what you mean about the pain. But re the physio - I guess do what your consultant says, but I worked with mine for a couple of years prior to the surgery and still work with her now - a good physio won't do anything they shouldn't, but mine worked in conjunction with the surgeon and with his guidance, so do what your consultant says presumably ! I wouldn't want to suggest anything different !
I know what you mean about the pain. See what the scan says. My pain wasn't cured at all and I ended up in pain management counselling which was amazing and transformed things. I had nerve issues following the surgery (different to yours) which died down over time. The only time my leg has collapsed is after a skiing fall (see I told you the pain management counselling changed things!) and the physio said it was a pain reflex - he suggested I took pain killers to avoid the body learning the response and then collapsing more often. If that makes sense. But see what the doc says.
I know what you mean about the pain. But re the physio - I guess do what your consultant says, but I worked with mine for a couple of years prior to the surgery and still work with her now - a good physio won't do anything they shouldn't, but mine worked in conjunction with the surgeon and with his guidance, so do what your consultant says presumably ! I wouldn't want to suggest anything different !
I know what you mean about the pain. See what the scan says. My pain wasn't cured at all and I ended up in pain management counselling which was amazing and transformed things. I had nerve issues following the surgery (different to yours) which died down over time. The only time my leg has collapsed is after a skiing fall (see I told you the pain management counselling changed things!) and the physio said it was a pain reflex - he suggested I took pain killers to avoid the body learning the response and then collapsing more often. If that makes sense. But see what the doc says.
dreamer75 said:
I can't walk more than a couple of kms now, 3-4 years after the op, just to put that distance into perspective.......
I did a LOT of walking before the op, even though I had a considerable amount of pain, I found that walking was one of the few things that really helped, without putting too much stress on the rest of the body. I haven't been able to go to the gym since the accident, two and a half years ago.Thanks for the replies. It's great to get another perspective on this from someone who has actually been through it.
It can be very difficult to stay positive. Sometimes it helped me to compare with a week ago. What can I do today that I couldn't do a week ago etc. etc. Pre surgery I was racing Caterhams and ultimately had to leave that behind (along with Snowboarding and Karting), along with trade shows for work, long walks etc. although walking is moving in the right direction now, and instead of racing I fly planes and am taking my bike license later this year, and instead of Snowboarding I ski 
It is very difficult to stay positive at times but it's so very important. Also don't rush. I had 3 months off work post-fusion (I had holes in the vertebra from the bones rubbing against each other so maybe a slower recovery, plus years of pain and muscle weakness caused by it), struggled with Tramadol withdrawal, Gapabentin etc., and some unpleasant post-surgery nerve issues in my feet and legs which subsided over time.
Its hard but see what the scan says. Also remember - you own your treatment. It's a weird one, but nobody actually "owns" your problem except you. I found the surgeons, physios, consultants etc. all have their area of expertise but it's easy to fall through the gaps.
It is very difficult to stay positive at times but it's so very important. Also don't rush. I had 3 months off work post-fusion (I had holes in the vertebra from the bones rubbing against each other so maybe a slower recovery, plus years of pain and muscle weakness caused by it), struggled with Tramadol withdrawal, Gapabentin etc., and some unpleasant post-surgery nerve issues in my feet and legs which subsided over time.Its hard but see what the scan says. Also remember - you own your treatment. It's a weird one, but nobody actually "owns" your problem except you. I found the surgeons, physios, consultants etc. all have their area of expertise but it's easy to fall through the gaps.
dreamer75 said:
Its hard but see what the scan says. Also remember - you own your treatment. It's a weird one, but nobody actually "owns" your problem except you. I found the surgeons, physios, consultants etc. all have their area of expertise but it's easy to fall through the gaps.
Scans are clear, everything is as it should be, yet I am in a heck of a lot of pain, way more than I was, pre op. Have another consultation with my neurosurgeon in the coming weeks to see where we go next, but it does feel that I am falling through the gaps at the minute. GP changed my meds and they really aren't agreeing with me. Extremely irritable and feel like my I am being eaten alive by insects, skin feels like I'm on fire, the joys of the side effects of pain killing meds.On the plus side I joined a group for people suffering from chronic pain, well the wife signed me up to it, so I had to go. It was full of MILF's, three men in a room full of women in need of a shoulder to cry on, well a man can dream, though they'd probably hurt me, but not in a good way.
Another side effect seems to be talking absolute crap and saying exactly what I think to the point of being very insensitive and even insulting. Really need to engage my brain before opening my mouth.
sorry to hear thatCan you see the neuro chap any earlier? I got transferred to a pain management consultant, who in turn recommended a CBT counsellor (before trying either more surgery or a drug regime) which worked for me - somehow allows me to dial down the volume of the pain. But I have a different pain to you, by the sounds of it.
In my case it was the surgeon who prescribed the pain killers (including adding Gabapentin to the Tramadol post surgery after I got home and had a burning, clamping feeling in my leg like it was being squeezed in a vice) and the GP who managed the ongoing prescriptions etc.
Try not to overdo things, but also don't do too little - tough to figure out!
dreamer75 said:
Try not to overdo things, but also don't do too little - tough to figure out
Getting the balance right is proving to be quite difficult, but surprisingly doing too little is almost as bad as doing too much.The neurosurgeon, well his secretary at least has become quite difficult. She refused to give me the results of the scan over the phone and also refused to email them to me, stating data protection issues, though this wasn’t an issue previously. She then blatantly lied to me regarding his whereabouts, telling me he was holding a clinic, then when I asked to speak directly to him she said he was in surgery and when I pointed out her mistake she then said he was at a different hospital and was unable to take calls.
If you google the neurosurgeon the first number of results are about the secretary’s attitude, how rude she is and how it is best to deal with her via email. The only way I could describe her is a militant, man hating, fat lesbian type.
Luckily I am very friendly with the receptionist at my GP, she rang and not only was she given the results over the phone, she also received a copy via email, which she kindly sent me via WhatsApp. So much for data protection.
I’m now trying to arrange a new appointment to see the neurosurgeon, but I cannot get past the gatekeeper. She never answers the phone, too busy stuffing her face with cake and she hasn’t responded to either of the voicemails. I have at all times been courteous and polite in my dealing with the delightful Debbie. (Picture a Bulldog licking p*ss off a nettle crossed with a militant, man hating lesbian and you’ll have some idea as to what I’m dealing with.) This is all at a private hospital, so it isn’t exactly cheap.
Sorry to hear you are having issues.
I am off work at the moment recovering from spinal fusion and apart from a weeping seroma I am nearly pain free less than 4weeks after surgery. It has not always been so rosy for me though.
I had a spinal decompression 3 years ago and that left me with unbearable pain much worse than before the operation so I feel for you.
The last few years I have been taking a lot of painkillers and they do have quite an effect on your whole personality. I am now trying to wean myself off them.
I am off work at the moment recovering from spinal fusion and apart from a weeping seroma I am nearly pain free less than 4weeks after surgery. It has not always been so rosy for me though.
I had a spinal decompression 3 years ago and that left me with unbearable pain much worse than before the operation so I feel for you.
The last few years I have been taking a lot of painkillers and they do have quite an effect on your whole personality. I am now trying to wean myself off them.
Edited by jkh112 on Tuesday 3rd October 10:49
Ructions said:
Getting the balance right is proving to be quite difficult, but surprisingly doing too little is almost as bad as doing too much.
The neurosurgeon, well his secretary at least has become quite difficult. She refused to give me the results of the scan over the phone and also refused to email them to me, stating data protection issues, though this wasn’t an issue previously. She then blatantly lied to me regarding his whereabouts, telling me he was holding a clinic, then when I asked to speak directly to him she said he was in surgery and when I pointed out her mistake she then said he was at a different hospital and was unable to take calls.
If you google the neurosurgeon the first number of results are about the secretary’s attitude, how rude she is and how it is best to deal with her via email. The only way I could describe her is a militant, man hating, fat lesbian type.
Luckily I am very friendly with the receptionist at my GP, she rang and not only was she given the results over the phone, she also received a copy via email, which she kindly sent me via WhatsApp. So much for data protection.
I’m now trying to arrange a new appointment to see the neurosurgeon, but I cannot get past the gatekeeper. She never answers the phone, too busy stuffing her face with cake and she hasn’t responded to either of the voicemails. I have at all times been courteous and polite in my dealing with the delightful Debbie. (Picture a Bulldog licking p*ss off a nettle crossed with a militant, man hating lesbian and you’ll have some idea as to what I’m dealing with.) This is all at a private hospital, so it isn’t exactly cheap.
That is bizarre! Can you change consultant, or if it's through insurance could you make a complaint through them, or to the hospital he works from? The secretary for one of my consultants won't send through email, but would post to my home address.The neurosurgeon, well his secretary at least has become quite difficult. She refused to give me the results of the scan over the phone and also refused to email them to me, stating data protection issues, though this wasn’t an issue previously. She then blatantly lied to me regarding his whereabouts, telling me he was holding a clinic, then when I asked to speak directly to him she said he was in surgery and when I pointed out her mistake she then said he was at a different hospital and was unable to take calls.
If you google the neurosurgeon the first number of results are about the secretary’s attitude, how rude she is and how it is best to deal with her via email. The only way I could describe her is a militant, man hating, fat lesbian type.
Luckily I am very friendly with the receptionist at my GP, she rang and not only was she given the results over the phone, she also received a copy via email, which she kindly sent me via WhatsApp. So much for data protection.
I’m now trying to arrange a new appointment to see the neurosurgeon, but I cannot get past the gatekeeper. She never answers the phone, too busy stuffing her face with cake and she hasn’t responded to either of the voicemails. I have at all times been courteous and polite in my dealing with the delightful Debbie. (Picture a Bulldog licking p*ss off a nettle crossed with a militant, man hating lesbian and you’ll have some idea as to what I’m dealing with.) This is all at a private hospital, so it isn’t exactly cheap.
And yes too little is worse than too much. But if this is private, I would expect an appt much sooner than you have. After my surgery I was able to speak to the secretary (who in turn arranged for call backs from the surgeon within a short amount of time), and arrange appts quicker than anticipated etc. If it's private I do wonder if it's worth changing consultant if it really is that bad..?
Had a consultation on Wednesday morning, very short notice, only got the text late on Tuesday evening. Fusion is looking good according to the consultant, though he is concerned that there is a lot of inflammation and has put me on a two week course of Vimovo and has booked a course of injections in two weeks. He did not charge for todays consultation. He has also referred me to a pain management consultant, though he has asked me not to have any physio for now.
Oddly enough I felt better yesterday than I have in quite a while, pain was much reduced and I managed two, half hour walks with very little discomfort. I think it's now a matter of pacing myself, rather than looking for a quick fix, which is my normal way of doing things.
Oddly enough I felt better yesterday than I have in quite a while, pain was much reduced and I managed two, half hour walks with very little discomfort. I think it's now a matter of pacing myself, rather than looking for a quick fix, which is my normal way of doing things.
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
After just two days on the new medication and there is a noticeable improvement. Feel much better and have considerably less pain and can move a lot easier. Just back from a 5k walk at a moderate pace, though I didn't take the dog, feel guilty leaving him behind, but needs must. Will hopefully have a short walk later this evening.
Glad to hear things have improved for you.
I was readmitted to hospital last night because I had an infection. Surgery this morning with a warning that my metalwork may have to come out.
The surgeon left the fusion in place but I am in hospital for up to 10 days on intravenous antitbiotics.
I am sure it will be worth it in the end.
I was readmitted to hospital last night because I had an infection. Surgery this morning with a warning that my metalwork may have to come out.
The surgeon left the fusion in place but I am in hospital for up to 10 days on intravenous antitbiotics.
I am sure it will be worth it in the end.
jkh112 said:
Glad to hear things have improved for you.
I was readmitted to hospital last night because I had an infection. Surgery this morning with a warning that my metalwork may have to come out.
The surgeon left the fusion in place but I am in hospital for up to 10 days on intravenous antitbiotics.
I am sure it will be worth it in the end.
Really sorry to hear that, not the news you want after four weeks, infection is pretty rare at this stage, I was under that infection would occur much earlier. BUT you are in the right place and you'll be on the mend in no time, this time last week I was in the depths of despair, could barely move, I'm feeling much better now. Treat this as an opportunity to recover fully this time, put your feet up and let others do the running around, work will always be there.I was readmitted to hospital last night because I had an infection. Surgery this morning with a warning that my metalwork may have to come out.
The surgeon left the fusion in place but I am in hospital for up to 10 days on intravenous antitbiotics.
I am sure it will be worth it in the end.
PH Spinal Surgery Matters.
Gassing Station | Health Matters | Top of Page | What's New | My Stuff