Discussion
been keeping an eye on this thread for a while. i wont bore you with the story of Mrs P over the past 5 years but she (last week) has been referred to the London hospital for neurosurgery for fusion and trimming of L4 L5.
im sure the waiting list is going to be long but its taken this long to get this far. we only managed to get this sorted after a friendly point in the right direction by a PH'er about a particular surgery team to speak to.
we both have a lot of reading to do so i'll end up asking lots of questions im sure.
im sure the waiting list is going to be long but its taken this long to get this far. we only managed to get this sorted after a friendly point in the right direction by a PH'er about a particular surgery team to speak to.
we both have a lot of reading to do so i'll end up asking lots of questions im sure.
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.
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.
It's interesting how different people's outcomes have been. Short version of mine:
Horseriding accident, 1982 (age 13). Bilateral pars joint fractures at S1/L5 and L5/L4. Undiagnosed at the time and untreated.
35 years of adventure sports follow, with endless osteopath and physio treatment for a stubbornly sore lower back.
Eventually I can cycle, ski, but not walk, run or even stand around; pain pretty well constant and sometimes debilitating.
Finally go to a specialist and get a scan. Diagnosis:
Two collapsed discs (S1/L5, L5/L4; spondylolisthesis of L5). Danger of permanent damage to the sciatic nerve on the LHS. Tried injections without success, so...
S1-L4 fused (ALIF & PLIF) 29/11/16
Good initial recovery - walked 8km on day 14.
Then nocturnal hyperhidrosis, nearly a month of (literally) sleepless nights until bleed and psoas infection was diagnosed.
[hot tip - not sleeping and sweating buckets is an astonishing weight loss plan]
Massive doses of antibiotics for 6 weeks from January 1st - sorted by early Feb.
First outdoor bike ride 20/02/17 - 40mm of spacers under the stem, very slow, 9km to work (and, later, back again)
[somewhere between these two I got back to being able to touch my toes - physio and daily yoga FTW]
First proper bike ride 18/03/17 - down to 10mm of spacers, 90km @ 28km/h
Liege-Bastogne-Liege 22/04/17 (274km)
[from here on, back to normal fitness routine, although even now I'm still some way off being race fit]
L'Eroica 01/10/17 first big crash since the op; came down at 55km/h, broke 3 ribs. Back unaffected.
09/11/17 another crash (idiotic commuting accident) - dislocated and fractured my left shoulder. Back unaffected, but off the bike for 6 weeks.
18/12/17 first ski day since the op. No problem (although shoulder still sore).
Cut to today - shoulder is still a significant issue, but I've pretty well forgotten I ever had a back problem, apart from the anterior scar, around which I still have some numb skin. Can touch my toes, get down to the same aero position I had before the op, ski, but also run, walk and even stand around. No more excuses to avoid networking events. Dammit.
Luck and physiology will be the big factors. Other things that may have helped: I was as fit as I have ever been on the day before the op. I had a good surgeon and support team. I had (and still have) a superb physiotherapist. I was (and still am) religious about doing all the exercises she gives me.
TL;DR: I had a good outcome. I continue to do stupid things and hurt myself. My fusion has so far survived these stupid things.
Horseriding accident, 1982 (age 13). Bilateral pars joint fractures at S1/L5 and L5/L4. Undiagnosed at the time and untreated.
35 years of adventure sports follow, with endless osteopath and physio treatment for a stubbornly sore lower back.
Eventually I can cycle, ski, but not walk, run or even stand around; pain pretty well constant and sometimes debilitating.
Finally go to a specialist and get a scan. Diagnosis:
Two collapsed discs (S1/L5, L5/L4; spondylolisthesis of L5). Danger of permanent damage to the sciatic nerve on the LHS. Tried injections without success, so...
S1-L4 fused (ALIF & PLIF) 29/11/16
Good initial recovery - walked 8km on day 14.
Then nocturnal hyperhidrosis, nearly a month of (literally) sleepless nights until bleed and psoas infection was diagnosed.
[hot tip - not sleeping and sweating buckets is an astonishing weight loss plan]
Massive doses of antibiotics for 6 weeks from January 1st - sorted by early Feb.
First outdoor bike ride 20/02/17 - 40mm of spacers under the stem, very slow, 9km to work (and, later, back again)
[somewhere between these two I got back to being able to touch my toes - physio and daily yoga FTW]
First proper bike ride 18/03/17 - down to 10mm of spacers, 90km @ 28km/h
Liege-Bastogne-Liege 22/04/17 (274km)
[from here on, back to normal fitness routine, although even now I'm still some way off being race fit]
L'Eroica 01/10/17 first big crash since the op; came down at 55km/h, broke 3 ribs. Back unaffected.
09/11/17 another crash (idiotic commuting accident) - dislocated and fractured my left shoulder. Back unaffected, but off the bike for 6 weeks.
18/12/17 first ski day since the op. No problem (although shoulder still sore).
Cut to today - shoulder is still a significant issue, but I've pretty well forgotten I ever had a back problem, apart from the anterior scar, around which I still have some numb skin. Can touch my toes, get down to the same aero position I had before the op, ski, but also run, walk and even stand around. No more excuses to avoid networking events. Dammit.
Luck and physiology will be the big factors. Other things that may have helped: I was as fit as I have ever been on the day before the op. I had a good surgeon and support team. I had (and still have) a superb physiotherapist. I was (and still am) religious about doing all the exercises she gives me.
TL;DR: I had a good outcome. I continue to do stupid things and hurt myself. My fusion has so far survived these stupid things.
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.
Bit of an update on mrs P -
Saw a consultant at the royal free 4 weeks ago and gave him the scan we had done privately- compared with her last NHS scan in November it had got visibly worse.
He gave her the option of injections or surgery. After 6.5 years of pain she has opted for surgery. He recommended a discectomy as well as fusion of L4 L5.
Phone call from the National Hospital for Neurology and Neuro surgery on Monday, they had a slot yesterday to see a surgeon. She jumped at the offer and up we went.
She met with her consultant/surgeon - mr Dorward and he looked over her scans. Lots of discussion about how and what followed but the short version is that he isn’t happy with the idea of fusion at the moment but is supportive of her having the discectomy along with some other trimming and poking.
She hasn’t felt most of her right leg at all since October of last year, in fact, she wouldn’t know she had a foot if she couldn’t see it. She was a bit crushed when he said that the chances of getting the feeling back down that side were minimal. He is confident of a good result in terms of the pain.
Given a timescale of 6-8 weeks from now so not as long a wait as we expected.
Saw a consultant at the royal free 4 weeks ago and gave him the scan we had done privately- compared with her last NHS scan in November it had got visibly worse.
He gave her the option of injections or surgery. After 6.5 years of pain she has opted for surgery. He recommended a discectomy as well as fusion of L4 L5.
Phone call from the National Hospital for Neurology and Neuro surgery on Monday, they had a slot yesterday to see a surgeon. She jumped at the offer and up we went.
She met with her consultant/surgeon - mr Dorward and he looked over her scans. Lots of discussion about how and what followed but the short version is that he isn’t happy with the idea of fusion at the moment but is supportive of her having the discectomy along with some other trimming and poking.
She hasn’t felt most of her right leg at all since October of last year, in fact, she wouldn’t know she had a foot if she couldn’t see it. She was a bit crushed when he said that the chances of getting the feeling back down that side were minimal. He is confident of a good result in terms of the pain.
Given a timescale of 6-8 weeks from now so not as long a wait as we expected.
I had a few surgeries involving decompression and other trimming before my surgeon agreed to a fusion, so your wife is not alone in this kind of recommended approach.
I wonder if the warning about the failure to recover the feeling may be a worst case type approach so as not to get hopes up as I still have loss of sensation in one leg but was not warned about this.
I wonder if the warning about the failure to recover the feeling may be a worst case type approach so as not to get hopes up as I still have loss of sensation in one leg but was not warned about this.
jkh112 said:
I had a few surgeries involving decompression and other trimming before my surgeon agreed to a fusion, so your wife is not alone in this kind of recommended approach.
I wonder if the warning about the failure to recover the feeling may be a worst case type approach so as not to get hopes up as I still have loss of sensation in one leg but was not warned about this.
absolutely, im sure it was a worst case scenario thing but the main issue being that the nerve they have identified to free would cause loss of feeling on the outside of her leg but they cant work out why there is total loss of feeling. he mentioned more investigation so ive got a feeling its not going to be great news.I wonder if the warning about the failure to recover the feeling may be a worst case type approach so as not to get hopes up as I still have loss of sensation in one leg but was not warned about this.
anyway, fusion is out of the equation for now so back to you guys who have had or are having Fusion.
thanks for your help.
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 !
When I last updated this thread, I mentioned going to physio. He was my old physio so obviously knew the old me and probably didn’t listen or maybe even understand everything I had been through and he definitely left me in a much worse position than I was in than before.
So a couple of months were lost to bed and if I am honest I was feeling sorry for myself when I got a phone call from a man who I met in hospital who had the same op as me, checking how I was getting on. He recommended a new physio, bit of a journey compared to the old one and 50% more expensive, but as it turns out is worth every penny. He’s young, he listens and it actually seems like he cares. He told me that he would have me off the meds within 6 weeks and I rolled my eyes, I’d heard all this before, but he has managed to get me off them in 4. Instead of reaching for a bottle of pills when I am sore I’m on the floor doing my stretches and its working.
I’m not fixed, there have been false dawns before, but I have much less pain than I did previously, in fact pain is no longer my constant companion. I’m moving much better and in turn, walking much more regularly. My whole demeanour and outlook has changed and I’m even considering returning to work soon.
It feels like I’ve taken charge of this for the first time and I now have a degree of control over my pain, plus I no longer have the fog of tramadol, lyrica, diazepam or a host of other drugs that we have tried to manage my pain.
Hope everyone else is making progress.
In the mean time this vid, by Professor Peter O’Sullivan is definitely worth a look https://www.youtube.com/watch?v=dlSQLUE4brQ
So a couple of months were lost to bed and if I am honest I was feeling sorry for myself when I got a phone call from a man who I met in hospital who had the same op as me, checking how I was getting on. He recommended a new physio, bit of a journey compared to the old one and 50% more expensive, but as it turns out is worth every penny. He’s young, he listens and it actually seems like he cares. He told me that he would have me off the meds within 6 weeks and I rolled my eyes, I’d heard all this before, but he has managed to get me off them in 4. Instead of reaching for a bottle of pills when I am sore I’m on the floor doing my stretches and its working.
I’m not fixed, there have been false dawns before, but I have much less pain than I did previously, in fact pain is no longer my constant companion. I’m moving much better and in turn, walking much more regularly. My whole demeanour and outlook has changed and I’m even considering returning to work soon.
It feels like I’ve taken charge of this for the first time and I now have a degree of control over my pain, plus I no longer have the fog of tramadol, lyrica, diazepam or a host of other drugs that we have tried to manage my pain.
Hope everyone else is making progress.
In the mean time this vid, by Professor Peter O’Sullivan is definitely worth a look https://www.youtube.com/watch?v=dlSQLUE4brQ
jkh112 said:
Good to hear about your new physio. I have given up on physios as have tried many but never found one who can make any difference, maybe I should keep looking.
What is so different about this physio treatment?
I’ll watch the video later. Cheers.
This Physio has just made a couple of small changes that have made a big difference, he’s all about positivity, which I have to admit was seriously lacking in my life due to the pain. Plus I am actually putting the work in where as previously I expected to get better without having to do anything myself, if that makes any sense. It was as if I expected surgery then medication to fix everything and just lie about and wait for it all to magically happen. It wasn’t happening so I had to take a new approach. It may not last, but for now it’s working and I am getting stronger a little bit at a time. Previously I think I expected too much too soon then gave up because I wasn’t back to where I wanted to be within a couple of weeks. What is so different about this physio treatment?
I’ll watch the video later. Cheers.
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"
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