Pain Concern

Decompression of the Spine, chronic pain and Butrans Patches

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 ❤️

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PFKAAde

2 years ago

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

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PFKAAde

in reply to Fran060

2 years ago

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

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PFKAAde

in reply to Ladywriter1968

2 years ago

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

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Ladywriter1968

2 years ago

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.

PFKAAde

in reply to Fran060

2 years ago

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

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in reply to Fran060

2 years ago

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

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in reply to Fran060

2 years ago

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

Jenharri

2 years ago

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

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Decompression of the Spine, chronic pain and Butrans Patches

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