Good morning everyone
I am new on here. I have been reading various posts for some time now. I had a decompression on my spine about 6 weeks ago and seem to be living in chronic pain. Also I have been on fentanyl patches which have been changed to Butrans. I would love to hear from anyone, either to say hi or advice. Thank you, Fran ❤️
Morning Fran and welcome on board.
There is usually someone around with advice, support or just an ear to listen. I'm the ear this morning!
My husband was on Fentanyl for over 10 yrs and found them very good. Do you notice a difference?
Pat x
Good morning Pat
Thank you for your reply. I found the Fentanyl patches helped enormously but they were extremely addictive. My friends and family have said that I have changed since taking these patches, I'm not sure they understand chronic pain. I am 55 years old and wonder to myself is this it? Having said that I am a positive person. How did your husband get off the patches please Pat? X
He only came off them cos he'd reached max dose, for him of 100 squillys. The next one up just turned him into a zombie so pain consultant decided to try oxycontin.
At the end of the 72 hrs worth of Fentanyl he took patch off and took the oxycontin.
Yes he did feel rough and felt it may be a too lower dose. GP jiggled him up to 70mg. It was in fact withdrawal which GP said he shouldn't get. Shouldn't!
It wasn't too bad and he's fine now.
As I said he did very well on Fentanyl all those years but everyone is different as keep being told!
x
Thank you Pat
I am determined to get off the Butrans. Was made to feel very bad when I was in hospital. They kept telling me to take patch off but I said I wasn't strong enough after major surgery to go into withdrawal. Well done to your husband. When the GP prescribed them I wasn't told that are addictive although they have helped enormously with the pain x
Are you still in pain? If you didn't have the patch would you need something else?
x
Hi Pat, I am taking gaperpentin, cocodamol, the pain is getting better, it's 6 weeks since surgery. These patches are really good but I just want to get off them. I want to see if surgery has worked, too much to go through and still be on these. Hope this all makes sense? The sun is shining here today, which really helps, Fran x
Hi Fran
I have had what was termed (emergency) decompression surgery twice. Looking into it I see microdiscectomy is called decompression also, but what I had was a (lumbar and then cervical) laminectomy.
It has taken me nearly a year since the first and a lot of hard work and supervised exercise / stretching / loosening - but I am finally starting to get somewhere.
I have massively reduced the amount of painkillers I take and can now spend perhaps 80% of the day relatively pain free.
I still need sticks to walk far, but couldn't stand up in the shower for the first few months and I still get (and always will) pain in my lower back, but there is hope. It will take time and hard work.
A positive frame of mind will help enormously, as will heaps of motivation and a desire not to take it lying down.
Other folk don't really understand - a common theme in all chronic conditions (I have RA as well), and if they do they often feel powerless to help which can result in 'strange' behaviour from time to time.
One thing I have (slowly) learned is that they never will understand if you don't tell them. Being in a bad mood and expecting folk to know why won't make them, it is up to you to explain (when you're not angry with them preferably 😀), otherwise they will just think you are becoming grumpy, in my own experience anyway.
Ade
Thank you Ade
I have and been very grateful for the support that I have been given from family and friends and do count myself lucky. I have to admit there are days when I just want to hide away. I'm generally a positive person, this surgery has knocked me sideways. It sounds like you have been through an awful lot and admirably still being positive. Thank you and please keep in contact. I have never been in a forum such as this one and there are so many people in similar and worse situations which makes me feel less alone!
Fran x
Ha - it's taken me a long time to realise that (trying to maintain) positive thought is a big help. Not always easy though.
To be honest if I hadn't spent so long coming to terms with RA the back problems would have knocked me sideways for a long time.
But now I realise that it doesn't help in the slightest and it just means spending periods of your life being depressed and not much fun to be around.
So when my back went I took it in the chin, and as soon as I could stand the pain I did something about it and went to the gym (seeing a good Personal Trainer).
Best. Thing. Ever.
Really.
You'll find lots of people on here with far worse conditions and it both humbles me and gives me strength to see the way some people manage.
You've done the right thing in reaching out and joining up, you have to be the one to make the effort - nobody can make you - and this is a good first step.
Ade
Thank you Ade
I'm seeing my consultant on Thursday, so hopefully will be able to start physio. I'm very pleased I took the plunge and joined up. Yes there are people with far worse conditions. Hopefully the surgery has done its job and then it's time to do mine 😊
Take care, Fran
chronic long term pain is bad, as I said before on a post, I was easing and then fell on my back and made it worse now. but was told they wont operate unless emergency, but this is based on nhs though in uk. But from reading even after surgery sounds very painful. people dont understand how can they if they are not going through it all the time. Its a lonely illness I think.
Hi Ladywriter1968
The surgery I had was an emergency (although luckily I have insurance so was done privately), I woke up in the morning and couldn't walk as I had a disc that was pushing into my spinal cord.
I was told the NHS would have actually been better as I waited a couple of days to see the surgeon and he said I should have gone to hospital in an ambulance and they would have done it there and then.
The more I read the more I realise that spinal surgery of any kind is a bit of a lottery, and can lead to as many or more problems than it solves. I was told I may need a third op that would involve plates and screws and that I really, really didn't want that (and that was the surgeon talking).
I was 'lucky' in that I didn't need to have a fusion as part of the cervical laminectomy as my vertebrae had auto-fused. Again a fusion is a complex thing that adds to the potential for problems.
It may be that they don't feel an MRI is the correct thing to do, even privately they only do them when they are really needed. I don't know that obviously, but it isn't always (ever?) purely cost that they consider.
Good luck with your own situation. Constant pain is a horrible thing.
Ade
Hi, I am new here as well, I have two herniated discs and pinched nerve, and suffer sciatica, cant speak much about ops as never had one done. but I was gradually getting better and then fell on my back in the park over weekend and have set myself back weeks now, before I only suffered pain on getting up for a few hours it would ease on exercise, since the fall I got it all the time now, living on pain killers. since I already had mri and xray recently then wont give me another since fall due to nhs costs. great aint it. we get little support to be honest from the medical profession and are simply left to get on with it. I have to wait four months for a pain clinic, and have read on here some negative results of that as well.... I wish there was another way we didnt have to live with chronic pain.
can i ask everyone here, is this a UK site as not sure? just wondered?
Hi, thanks for replying, I'm in the UK but I think the site is based much wider. It sounds like you are really suffering. I had lots of other interventions before surgery. Physiotherapy, cortisone and epidural injections. It's too early to see if the surgery was a success. I'm seeing my consultant on Thursday so fingers crossed. Today was my first time of posting and there appears to be a lot of support on here and very helpful. I hope your pain eases, keep in touch please
Fran
Hi Fran
Ask your consultant if he / she thinks physio / PT is the route you should take.
For me I didn't have much physio, and as knowledgeable as they are, when I did they basically did a lot of examining to see how severe the neuropathy / pain was and gave me a bit of paper with some exercises on it.
For me the problem with that was that I didn't really know how to do the exercises properly, so it hurt and I didn't.
When I got fed up of the muscle wastage and my inability to walk, and after I had had two post-op injections (which helped with the pain) I started to get motivated to do something.
Long story, but it turned out my wife and surgeon both used the same PT and I enquired if she would be worth going to see. The surgeon said yes and that she was very good, he said it might hurt but that I needed to work through some pain if I wanted to get anywhere - so I went to see her and have been for about 3 - 4 months now.
It may not be appropriate for everyone or they may be at the wrong stage in their recovery (I was about 5 months post the second op, but it has made such a difference I'm so glad I did.
Ade
Hi Ade
When I had the surgery 6 weeks ago the consultant said I wasn't to have Phsiotherapy because the nerves needed to "settle" but I had a call on Monday from physiotherapist. It's confusing, I need a structured way forward and that is what I'm hoping for on Thursday.
I'm pleased to hear that you are making such positive steps. Being on this forum is really helping.
I hope you have a lovely, pain free as possible Friday.
Thank you
Fran
hi fran my brother had decompression surgery on 23 june and was let out the next day he has been in chronic agony since,he was hoping his leg pain would go they told him his back pain would not it was for his legs and to stop him falling all the time in work he is taking co cododamol and pregablin they have not given him anything stronger at all, he can not sit back or drive at all,he has done every treatment the same as you plus acupuncture he is so frustrated and expects to be able to just walk but the pain in his legs are back as bad as they were during the night and day they said when they opened him up there was a lot of tissue damage and a benign tumour so had to strip a lot away to find the nerve they want him back in september to do a dye test as they do not know what they are dealing with reading your post is very eye opening thank you for posting as i am his carer and he mine so now i know what to expect i hope all goes well for you and less pain and answers thank you lorraine xxxx
Hi Lorraine
I'm really sorry to hear this about your brother. I am stunned that they let him home the next day! I was in hospital for a week. I wasn't allowed home until physiotherapy could see that I could climb some stairs.
It sounds dreadful. I was already on the Butrans patch but was told if I wasn't I would have been given liquid morphine. Words can't express how sorry I feel for him. He is lucky he has got you to care for him and he for you. Take care, I'm here if you need a chat anytime.
Fran xxx
thanks fran bless your heart xxx
You too Lorraine, remember it is very early days for your brother after such invasive, major surgery. I really wish you both well xxx
iya fran i am nervous for my brother,he fell on saturday and thankfully there was a chair behind him but it killed his back so much he was fighting against tears,then earlier on sunday evening iwas sat down on the sofa and he was the other end as you know you have to move around to stop blood clots he walked about 3 yards and went over again bad dead leg on the right this time he just hit the edge of the chair and i jumped up to help him i think he is doing way too much but he will not listen to me and refused help i do not know which way to turn i do not know wether to call the hospital as they are at fault for letting him out way too early,they are not seeing him untill september,what do i do ???? xxxxxx
Hi Lorraine, I'm really sorry to hear this. Please ring the hospital asap. I can't understand why they sent him so soon. If they can't help ring doctor or 111. Thinking of you both, Fran xxx
PS, please keep me updated, I'm here if you need to talk xxx
iya fran did call the hospital when my brother was asleep,and apparently he is not doing himself any favours and expecting too much too soon he wants to run before he can walk,as he thought it was a minor op but it was not it was major and he has to take it easy so i have been kicking his ass today and forcing him to take things easy,hahahah he is not pleased with me but i him told if he does not behave i am going to end up in hospital with my heart as i have had several angina attacks,not lies i have just hid them from him and my two sons,but it has worked he has ate bacon and eggs and beans and toast for his tea,that is the most he has ate for weeks i was so pleased,he is panicking that he may have to go through the whole thing again as he told me when he goes for the dye test in september they may have to remove the tumour i thought they had removed its only 1 per cent of it being malignant but to stop me worrying he said they removed it so you see what a stubborn sod i am up against !!! hows you is your follow up today if so let me know how it goes please xxxxxxxx
I can see what you're up against! I am in my 7th week after surgery and seeing the consultant on Thursday. As I wrote previously your brother had had major surgery, it will take a long time to recover. I hope you are ok? You are probably exhausted yourself! Take care and have a good day, both of you xxxx
Yes it is run by that wonderful Pain Concern actually based up here in Scotland. It covers the whole of the UK and world wide. Truly international.
Open to all
x
I have widespread arthritis meaning every joint. I have spinal stenosis L4L5 L5S1 also in my neck C3 C7 arthritis of the facet joints. I have had Epidural's which have helped.
I use the Butrans patch, have found this to be the only pain med to really help.
I hope to have a mild decompression on the spine in the autumn non invasive.
If I am without pain and can manage I will come off them but if I still feel the chronic debilitating pain I have now which is controlled then I will stay on them.
Fatigue is another thing to be dealt with Disgnosed with Fibromyalgia 15 years ago so now my body gets completely muddled with all the different complaints psoriatic arthritis psoriasis & osteo which can also cause fatigue.
If your problem is the stenosis and you are free of pain then yes I would ween off but if you still have pain then you will need to discuss your pain management nothing worse than just trying to put up with the pain.
Take care
Jen x
Thank you Jen
I will keep you posted after next weeks consultation appointment.
You have an awful lot to put up with, yes you are right nothing worse than putting up with pain, it's debilitating.
I hope you have a good weekend
Take care
Fran x
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