Discussion
Scrump said:
No experience of a Spinal Stimulator, but I did a quick Google search and the surgery to fit is does not seem too invasive so it sounds like it may be worth you giving it a try.
I did use a Tens machine to help with the pain before my last operation and this was mildly effective, so I can see how a Spinal Stimulator would help.
I hadn’t considered a tens machine until I read your post, so I had a look on Amazon and bought one for £20, it’s better than I expected. I definitely have had some relief. Though my condition does seem to be affected by the weather, I suffered terribly through the winter and the damp spring. We’ve had a couple of warm weeks and it has really helped.I did use a Tens machine to help with the pain before my last operation and this was mildly effective, so I can see how a Spinal Stimulator would help.
I seriously doubt that I’ll be having any more surgery, wife is totally against it and I can’t say I blame her.
Something I hadn’t really considered, this constant pain really does grind you down. To say I have been a little bit grumpy this last few months would be a bit of an understatement.
Hope everyone else is doing well.
Ructions said:
Scrump said:
No experience of a Spinal Stimulator, but I did a quick Google search and the surgery to fit is does not seem too invasive so it sounds like it may be worth you giving it a try.
I did use a Tens machine to help with the pain before my last operation and this was mildly effective, so I can see how a Spinal Stimulator would help.
I hadn’t considered a tens machine until I read your post, so I had a look on Amazon and bought one for £20, it’s better than I expected. I definitely have had some relief. Though my condition does seem to be affected by the weather, I suffered terribly through the winter and the damp spring. We’ve had a couple of warm weeks and it has really helped.I did use a Tens machine to help with the pain before my last operation and this was mildly effective, so I can see how a Spinal Stimulator would help.
I seriously doubt that I’ll be having any more surgery, wife is totally against it and I can’t say I blame her.
Something I hadn’t really considered, this constant pain really does grind you down. To say I have been a little bit grumpy this last few months would be a bit of an understatement.
Hope everyone else is doing well.
She’s going back into Pain management at the royal free. Have they talked about that option for you?
pidsy said:
She’s going back into Pain management at the royal free. Have they talked about that option for you?
Unfortunately I live in Ireland and the approach to pain management seems to be more medication or further surgery. There’s certainly no cohesive approach to any part of it. It just feels like I am being passed from pillar to post and it’s not as if any of it is cheap. I feel that having all my procedures privately has been detrimental to my recovery, at least if I had used the local health services there may have been some type of joined up approach, or maybe that’s just wishful thinking, who knows.
Wishful thinking I'm sure - my mum has back problems too and the NHS treatment has been woeful. Mostly non-existent, and what there was was either awful, or postponed so many times it's taken years to happen.
My private experience was much better. But, you do have to keep in mind that YOU own the problem and getting it fixed - nobody else. Once you accept that, and that nobody is going to run a process for you, it helps.
You could try looking up private pain management counsellors? CBT for example, which is what transformed my life....
My private experience was much better. But, you do have to keep in mind that YOU own the problem and getting it fixed - nobody else. Once you accept that, and that nobody is going to run a process for you, it helps.
You could try looking up private pain management counsellors? CBT for example, which is what transformed my life....
There is a podcast recommended by a PHer that some of you may find interesting:
https://www.pistonheads.com/gassing/topic.asp?h=0&...
I have only listened to episode 1 so far but will be listening to the rest.
https://www.pistonheads.com/gassing/topic.asp?h=0&...
I have only listened to episode 1 so far but will be listening to the rest.
dreamer75 said:
But, you do have to keep in mind that YOU own the problem and getting it fixed - nobody else. Once you accept that, and that nobody is going to run a process for you, it helps.
That’s exactly my issue, I’m expecting someone to fix this issue for, me, without too much input at my end. Because my first surgery was so successful I fully expect the second op to be equally so, sadly things haven’t exactly gone as planned, but recently I’ve been looking for someone to blame for this. It’s not like it was my fault.It can be difficult to take steps to help when the pain levels are so high, but it’s time to take ownership of this and get out of the rut I’m currently in.
Taking ownership of it is a big thing. It's a hard lesson, but I've found it to be true. Regardless of what the medical issue is, and whether it's private or NHS. The days of a healthcare provider taking an interest and taking you on the journey, if they ever existed, are gone in my experience.
The CBT I did spent a lot of time drilling in the concept of Acceptance. Not Giving In, as I thought it meant, but Acceptance. I think those 2 things together; ownership and acceptance, made a big difference.
If you sit around waiting for someone to fix it, it won't happen. If you want to blame someone - what does that actually achieve? It's a waste of mental energy and helps drag you down the negative spiral.
My mum has gone through the same mental journey and got very bitter, but is now improving massively in her mental state. There are some good books I can recommend if you're interested (let me know because I'll have to dig them out - I think they're written by Neville Shone) which talk about the pain loop. Your pain affects your mental state, we know that. But also your mental state affects your pain - or at least your perception of the pain. If you can take that first step it's the most difficult one but things start to improve. It took me a few weeks of tears and arguing with the counsellor but it was the beginning of a new life.
I'm no professional though (clearly!) and what worked for me, may or may not work for you. Just sharing my experience in case it helps.
Also, don't get me wrong - I have down days too - especially at the moment where I am stuck not able to do any exercise, walking, standing etc. due to some other issues.
The CBT I did spent a lot of time drilling in the concept of Acceptance. Not Giving In, as I thought it meant, but Acceptance. I think those 2 things together; ownership and acceptance, made a big difference.
If you sit around waiting for someone to fix it, it won't happen. If you want to blame someone - what does that actually achieve? It's a waste of mental energy and helps drag you down the negative spiral.
My mum has gone through the same mental journey and got very bitter, but is now improving massively in her mental state. There are some good books I can recommend if you're interested (let me know because I'll have to dig them out - I think they're written by Neville Shone) which talk about the pain loop. Your pain affects your mental state, we know that. But also your mental state affects your pain - or at least your perception of the pain. If you can take that first step it's the most difficult one but things start to improve. It took me a few weeks of tears and arguing with the counsellor but it was the beginning of a new life.
I'm no professional though (clearly!) and what worked for me, may or may not work for you. Just sharing my experience in case it helps.
Also, don't get me wrong - I have down days too - especially at the moment where I am stuck not able to do any exercise, walking, standing etc. due to some other issues.
I’ve finally got out of the rut but it has been difficult, oddly enough it was a post on Twitter from someone going through something similar that got the ball rolling.
Something that I have noticed and was wondering if anyone who has had a fusion has experienced something similar is that the area around the fusion and scar is always cold. I first noticed it last winter when we were coming home from a night out, I had the heated seat on the entire journey, but that area of my lower back was stone cold. Mrs couldn’t believe it and over the last month the same thing is happening, so much so that every evening I’m using a hot water bottle on my lower back. Every morning that I wake it’s the same. It’s always cold to the touch.
Otherwise pain levels are ok, but I’m still using Tramadol, one on a good day, more on the bad days. Hope everyone else is doing well.
Something that I have noticed and was wondering if anyone who has had a fusion has experienced something similar is that the area around the fusion and scar is always cold. I first noticed it last winter when we were coming home from a night out, I had the heated seat on the entire journey, but that area of my lower back was stone cold. Mrs couldn’t believe it and over the last month the same thing is happening, so much so that every evening I’m using a hot water bottle on my lower back. Every morning that I wake it’s the same. It’s always cold to the touch.
Otherwise pain levels are ok, but I’m still using Tramadol, one on a good day, more on the bad days. Hope everyone else is doing well.
Glad to hear you are finding things a bit better.
I had not noticed my surgery site being cold (I will monitor it now) but I notice that I have my heated seat in the car switched on permanently and really notice when I drive my other car with no heated seats.
My pain is at a bearable level but due to the nerve damage I managed to break my ankle a couple of months ago. I have reduced sensation in my left leg and this led to me stepping awkwardly off a step and hearing a loud crack as I rolled my foot inwards.
I had not noticed my surgery site being cold (I will monitor it now) but I notice that I have my heated seat in the car switched on permanently and really notice when I drive my other car with no heated seats.
My pain is at a bearable level but due to the nerve damage I managed to break my ankle a couple of months ago. I have reduced sensation in my left leg and this led to me stepping awkwardly off a step and hearing a loud crack as I rolled my foot inwards.
Sorry to hear about the leg, hope you are well on the road to recovery. That sounds painful.
I had a fall early in the year, luckily I was in soft sand on the beach, went completely head over heels but managed to hold on to the dog. No real damage other than my pride.
I’m definitely weaker down my left side now, whereas my right side was weaker before my fusion.
I had a fall early in the year, luckily I was in soft sand on the beach, went completely head over heels but managed to hold on to the dog. No real damage other than my pride.
I’m definitely weaker down my left side now, whereas my right side was weaker before my fusion.
This is a picture of my spine, I had a L5/S1fusion done in 2003 but over the last 3 years have been suffering a lot with pain so have been to see a consultant who after seeing my MRI and CT scans did a facet joint injection of the L5/S1 area which has had no effect at all.
I showed the scans to my phisio who disagreed with the consultant ( who had said there was not a lot wrong) so next week I’m off to get a second opinion from the consultant who saved Michael Watson’s life as he deals in multi level problems which my phisio thinks I have.
Tablets help slightly but when the pain hits which is every day I really struggle with it and then a few weeks ago I fell over and twisted my knee badly.
Stick with the exercise programme and fingers crossed that’s the end of it.
I’m currently filling out forms for a pain management clinic and it’s grim reading, but it’s a multi-disciplinary approach and I’m hopeful will be helpful. It’s also a public hospital and has a good reputation, so they’re not really concerned about how deep my pockets are. All of my treatments so far have been private and it has been really disjointed, no pun intended.
I’m currently filling out forms for a pain management clinic and it’s grim reading, but it’s a multi-disciplinary approach and I’m hopeful will be helpful. It’s also a public hospital and has a good reputation, so they’re not really concerned about how deep my pockets are. All of my treatments so far have been private and it has been really disjointed, no pun intended.
Good luck Ructions - honestly I know I go on about it, but the pain management counsellor really changed my life. There are some books by Neville Shone which might be worth a read while you're waiting.
My area isn't cold but it's on my tummy, and bits are still numb. As are parts of my leg, and now I've realised my right calf is much smaller and weaker than my left so I'm trying to rectify that (it's due to nerve damage from the surgery). But like you I'm a big fan of the heated seat and travel with heat pads "just in case"!
My area isn't cold but it's on my tummy, and bits are still numb. As are parts of my leg, and now I've realised my right calf is much smaller and weaker than my left so I'm trying to rectify that (it's due to nerve damage from the surgery). But like you I'm a big fan of the heated seat and travel with heat pads "just in case"!
Still waiting for an appointment with the pain management clinic, I’ve had a letter to say that I have been accepted and I’m on the waiting list. For now I suppose I just have to wait.
Things seem to have improved over the last few months, I’m moving better, I’m not in as much pain, I’m taking a lot less medication, I’m hoping after what has been quite a bad year, things may be improving.
I decided not to go ahead with the spinal cord stimulator, I’ve heard too many horror stories, but I also feel that I’m dealing with sales men and not medical professionals. ‘Oh you’ve got medical insurance, sir’, then you see the €€€€€ in their eyes.
Worryingly my senior counsel, thinks I should have the stimulator fitted, his only concern is the settlement figure and how we can inflate it. He’s not the one who has to go under the knife and have a battery pack strapped to his arse.
I hope everyone else is doing well.
Things seem to have improved over the last few months, I’m moving better, I’m not in as much pain, I’m taking a lot less medication, I’m hoping after what has been quite a bad year, things may be improving.
I decided not to go ahead with the spinal cord stimulator, I’ve heard too many horror stories, but I also feel that I’m dealing with sales men and not medical professionals. ‘Oh you’ve got medical insurance, sir’, then you see the €€€€€ in their eyes.
Worryingly my senior counsel, thinks I should have the stimulator fitted, his only concern is the settlement figure and how we can inflate it. He’s not the one who has to go under the knife and have a battery pack strapped to his arse.
I hope everyone else is doing well.
six months with no update must be frustrating as hell.
Mine seems to have settled to a pain level I can tolerate reasonably well. Working from home started to cause me a few pain issues as I didn't have my decent chair etc from the office. Now I have these at home things are not too bad.
Mine seems to have settled to a pain level I can tolerate reasonably well. Working from home started to cause me a few pain issues as I didn't have my decent chair etc from the office. Now I have these at home things are not too bad.
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