Discussion
Ozzie Dave said:
Just a question, my daughter (14) has CP and a number of other conditions and has been diagnosed with scoliosis at 79 degrees currently (it was at 32 degrees 5 months ago) . We have been advised that her only option is a full length spinal fusion, she has already had both hips rebuilt due to displacia, and tendon and muscle moves and is in a wheelchair . She also receives 3 monthly botox in her legs. has anyone else had a child go through this and what should we expect afterwards. and before anyone asks, no its not a put on, we have been advised by the team that a cast does not work with CP it just continues to deteriorate uncorrected until it becomes fatal. But what should we expect?
I don't know but have a look for the ADR UK forum. It's mostly for artificial disc replacement, but has people with all sorts of back issues including (IIRC) a lady (or girl I can't remember) who has bad scoliosis and I think she had a full spinal fusion. It's a helpful forum, but can be a bit depressing, as people on there have mega serious issues which last years so try not to get dragged down by it.
I have the one sweaty one dry - weird isn't it!!!!!! i have found good cream for the dry one though - anything with Urea in it. Sounds grim but works a treat! Standing also does it for me, so currently paying the price of standing on a stationary train like a sardine yesterday for 90 mins (40 mins at one station due to delays 
)
)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....
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.
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"!
I had a fusion L4/5, everything was in a bit of a state before the op. Quite a few days in hospital, few weeks off work, then a phased return (IT so not a manual job) and in reality it's never quite gone back to "normal". So I think everybody's different! It depends so much on the issue, what state it's in, how long it's been going on for etc.
It took me 2-3 days to be able to stand I think, mostly that's because I was so dizzy every time I tried (low blood pressure), as opposed to back related.
It was quite a while ago, but I vaguely remember doing most normal stuff within a small number of months.
It took me 2-3 days to be able to stand I think, mostly that's because I was so dizzy every time I tried (low blood pressure), as opposed to back related.
It was quite a while ago, but I vaguely remember doing most normal stuff within a small number of months.
I remember pre-surgery days and they were pretty dark places. In all honesty some of the post-surgery days were pretty dark too - as my Facebook memories remind me at about this time of year!
I am obviously not medical, but I have had an L4/5 fusion (after a microdiscectomy) and although it was not an easy process, now I jog, cycle, ski, ride a motorbike, can sit in a car for hours on end etc. etc. ........ life is generally great. Yes I still do exercises pretty much every day, yes I still make allowances (standing for any time is difficult, slow walking painful etc. etc.), but life is pretty normal I think! I only wish I hadn't left it so long to get the fusion done, because more damage was done by waiting (in my case the disc had pretty much disintegrated and the vertebrae were resting on each other and rubbing on each other, which caused damage to them meaning no artificial disc, and fusion instead).
I guess all I'm saying is.... fusion doesn't have to be a disaster, it can be a life changer in a positive way. The day the surgeon told me it was unlikely to be a disc replacement and more likely to be a fusion, I was in shock. In tears. Almost hysterical. After the surgery when a magic wand hadn't been waved and it took a while to recover, I went to a fairly dark place. But after time, some counselling, and a change in mental state - as I say, life is great.
Nobody can tell you what to do, in the end it's your decision, I just wanted to lend you some support and a virtual hug.
Also have you checked out the forum ADR UK? I don't go there anymore because selfishly I find it difficult to be reminded of what life used to be like (I don't want to risk my own mental state) but at the time it was a really helpful place with some amazing people.
I am obviously not medical, but I have had an L4/5 fusion (after a microdiscectomy) and although it was not an easy process, now I jog, cycle, ski, ride a motorbike, can sit in a car for hours on end etc. etc. ........ life is generally great. Yes I still do exercises pretty much every day, yes I still make allowances (standing for any time is difficult, slow walking painful etc. etc.), but life is pretty normal I think! I only wish I hadn't left it so long to get the fusion done, because more damage was done by waiting (in my case the disc had pretty much disintegrated and the vertebrae were resting on each other and rubbing on each other, which caused damage to them meaning no artificial disc, and fusion instead).
I guess all I'm saying is.... fusion doesn't have to be a disaster, it can be a life changer in a positive way. The day the surgeon told me it was unlikely to be a disc replacement and more likely to be a fusion, I was in shock. In tears. Almost hysterical. After the surgery when a magic wand hadn't been waved and it took a while to recover, I went to a fairly dark place. But after time, some counselling, and a change in mental state - as I say, life is great.
Nobody can tell you what to do, in the end it's your decision, I just wanted to lend you some support and a virtual hug.
Also have you checked out the forum ADR UK? I don't go there anymore because selfishly I find it difficult to be reminded of what life used to be like (I don't want to risk my own mental state) but at the time it was a really helpful place with some amazing people.
Good news!
It's a journey but hopefully the first step of a great one ! Don't be surprised by ups and downs - I was in hospital for a week, took me quite a few days to get out of bed because I kept fainting (low blood pressure) so had a catheter for that time. Then when I went home of course they give you the tramadol etc. then I went downhill and ended up on gabapentin as well for a bit, so don't be surprised if it's a wobbly journey with steps forwards, steps backwards etc.
Be patient, and don't panic!
It's a journey but hopefully the first step of a great one ! Don't be surprised by ups and downs - I was in hospital for a week, took me quite a few days to get out of bed because I kept fainting (low blood pressure) so had a catheter for that time. Then when I went home of course they give you the tramadol etc. then I went downhill and ended up on gabapentin as well for a bit, so don't be surprised if it's a wobbly journey with steps forwards, steps backwards etc.
Be patient, and don't panic!
That's amazing Dunc, well done!
On the bowels thing though... I did the same - lied and said yes because I was desperate to get home. Resulted in an emergency GPs appt in the middle of the night and a fairly unpleasant rest of night. The pain !!!!!!!!! So be careful with that one. Mind you, it had been > a week by that time
On the bowels thing though... I did the same - lied and said yes because I was desperate to get home. Resulted in an emergency GPs appt in the middle of the night and a fairly unpleasant rest of night. The pain !!!!!!!!! So be careful with that one. Mind you, it had been > a week by that time
My only tip on the withdrawal, is my pharmacist suggested water soluble tramadol. The GP didn't know they existed and had prescribed me the capsules, but it allowed me to taper the dose at smaller levels - previously I was opening the capsules and trying to divide up the powder which I don't think is very sensible!
Sounds like you're both doing great - a week post surgery I was still in the hospital! Congrats
Sounds like you're both doing great - a week post surgery I was still in the hospital! Congrats
I wouldn't like to comment on your case at all, not a medic etc., but if it helps I had fusion from the front a few years ago for L4/5. I don't remember being told about significant risk to bowels etc. as a result of going in from the front specifically. There has been some minor nerve damage to my right leg which has taken a few years to show properly (leg is getting weaker over time and the foot is sweaty/clammy with poor temperature control). But the benefits for me far outweighed that. There is also a numb patch on my left leg but I don't remember if that was post surgery or was already there from the back problem itself.
Since the fusion I've taken up skiing, mountain biking, running, motorbiking, and various other things I could only have dreamt of pre fusion. It took a few years to get to that point, but I couldn't have done the couch potato thing (like you, it would've been one of my worst nightmares!)
Since the fusion I've taken up skiing, mountain biking, running, motorbiking, and various other things I could only have dreamt of pre fusion. It took a few years to get to that point, but I couldn't have done the couch potato thing (like you, it would've been one of my worst nightmares!)
Four Litre said:
Thanks for that. The surgeon is highly rated (Stanmore) so I'm ok with his ability, I'm terrified of making things worse. I'm lucky in that Monday-Friday I'm working at my desk with 0 back pain. Come the weekend I try and do something and it comes on as I'm loading up the pressure on the fracture site by standing up. After reading all the literature and reading online it really feels like a roll of the dice as to the outcome. On the positive side I'm relatively fit, slim and a non smoker so have that going for me which I understand helps with the overall operation and healing process.
So difficult isn’t it. For me it was an easy choice because I was debilitated and couldn’t go on with life as it was. At the time I was going down the artificial disc route (in fact there used to be a really good forum called ADR uK which might be worth checking out if it’s still going - not just ADR conversations), then came around from the anaesthetic to be told they couldn’t do the ADR but had fused instead. Roll onto now and apparently fusion is preferred now so perhaps I was lucky !Edited by Four Litre on Tuesday 8th March 11:43
But I am having to have the same process about a knee op - do it, don’t do it etc., so I know how you feel !
Gassing Station | Health Matters | Top of Page | What's New | My Stuff