Ongoing chronic pain : Hi everyone had spinal... - Pain Concern

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Ongoing chronic pain

Hi everyone had spinal fusion surgery in 2004 after many many years of intense pain whilst trying to hold down a job in construction . To make it as short as possible I suffered with severe spinal pain for many years it was then decided surgery was needed to stabilise my spine . In my naivety I thought it would help or rid me of my pain . After an 8 hour op on awakening from surgery I when't into shock was also in a private ward where they had never looked after a spinal patient . I knew immediately that something was not as it should be . The pain was the worst pain I have ever experienced in my life my time in hospital was not a pleasant time . Anyway I live on very strong pain meds oramorph and oxycodone these inturn create there own problems . What I would like to know has anyone out there had fusion surgery with pedicle screws rods and cages and gone on to have a spinal stimulator fitted . Has it worked for you or even a morphine pump just something that helps with chronic 24 hour 7 days a week pain . I'm at the end of the line fighting pain since 1985 and failed surgery since 2004 that thought has gone through my mind many times the only thing that stops me is I have a son but I'm tired worn out sick of fighting pain . Thanks in advance for any help or replies

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Hi. I have to take up to 90mg of oxycodone and many tramadols a day to be able to do anything.’often very little. I haven’t had the pump but I hear it is a good option. However, the spinal surgery to fuse....it always seems to have horrible side effects or worse pain from what I’ve read on these forums. Look into the pump first. See what happens. Also, your a long way from the top of the pain ladder. There are different kinds of medications that they can give you. These are only for the most serious cases. This sounds like you. Never have anymore surgery before you look to managing your pain more efficiently. It could get worse! Imagine. Just never give up fighting for what you deserve! Never.

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Hi make thanks for reply mate sorry to hear of your pain . The oxycodone isn't a great med to be on is it I'm taking 200mg a day can't say that I enjoy it . Been through four pain clinics mate nothing appears to help only oxy that does make it a little more comfortable . You are quite correct about surgery I do not know anyone that has had fusion that came out better . My own surgery was hell the only time I got any pain relief is when one of the nurses gave me my own oxy which they had locked away along with the pain meds they had me on after surgery she nearly killed me but God it was nice to be out of pain for a short time . So many treatments are not available anymore once you have implants in your spine it's difficult more like impossible to find something that works anymore . Anyway how are you doing jake are you thinking about fusion or not . How are you coping with taking oxycodone are you getting many side affects or are you getting away with those at the moment .

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Hi. The first thing I would say (you’ll not want to hear this but you must trust me) try and lower the oxycodone. Why? Evidence now shows on the NICE prescribing guidelines that oxycodone above 120 mg can cause more pain. Have you looked into hyperalgesia? I reduced mine only when I couldn’t get any more relief from putting the dose higher. For the first week I was uncomfortable but it did get better.

This is the thing, my own doctor didn’t tell me about this, another doctor tried to lower my dose and didn’t tell me why. I wouldn’t of taken this doctors advice at all if I hadn’t bothered to imagine what the reason could be that someone could say take less. That led me to start researching and then I got onto the nice guidelines. I do think that I have reached the limit and I may be looking at other drugs far up the pain ladder. There are quite a few stronger pain medications.

Have you ever tried the drug Buprenorphine? The patches OR the oral dissolvable lozenges?

This was the first option that my doctor put me on before he put me on oxycodone. This is wise unfortunately it didn’t work the way that it should’ve for me but it may work for you. I know that people like us have a limit to what can be done with medication and we have to learn to pace ourselves and unfortunately we also have to lower our expectations to a point. It’s important to keep a daily diary but don’t fill the diary up just with medically-based subjects right about some things that you’ve enjoyed all that you’re thankful for in the day. Sometimes I find myself just thanking in my writing because I had a bath, because I have food or just because I have medications! I also have bipolar disorder and I have to see a psychiatrist for this as my mood goes up and down you can imagine at different times (high moods) I’ve put strain on my back and haven’t always realised what I’m doing. It’s not clear how I got this pain in my back. It’s the worst kind of pain because it needs to ‘be turned off’ because it runs constantly even when laying in bed. It’s a deep ache. It can be so painful it takes my breath away. I am waiting for the pain clinic again, i’ve not been to appointment yet as I was ill with my mental health. Another thing I’ve researched is why they want us to do physio. It’s not critically about movement it’s about getting nutrients to those parts of the body! Again if people told us stuff like this we would keep it up even at a minimal level. On a good day I can walk at least 20 minutes and I can do it briskly. For an hour with discomfort. However, I can’t stand in one place for long, this rules out cooking. I also can’t hold myself up, sitting upright for long. I was abused by my mother as a baby and I needed physiotherapy on my spine because she wouldn’t pick me up. I think something must’ve been done then that was permanent. Whatever the case I’ve had this pain for four years now. I wonder do you have problems with washing yourself are you able to cook or walk? Do you have people around you that can support you? Jake

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Hi jake so sorry to hear of your pain and other issues you having to deal with . It does help just connecting with other people that know and understand a little more what we are dealing with on a daily basis . Thanks for the info on oxy and yes I'm aware of what these drugs do. My last specialist at my last pain clinic educated me on what these things do to the brain and other parts of the body . One did drop down to 60mg twice daily but found the pain far too intense to cope with . I'm kind of lucky that my gp surgery as a in house pharmacist I have had many conversations with the pharmacist . Unfortunately for me I have been through so many drug trials but had very little success and suffered lots of very unusual side affects. I was thinking of trying to drop down by 20mg making it 80mg twice daily I'm also given liquid morphine for breakthrough pain but my pain is so severe even these cant control the pain . I do try to walk daily it's not much and I'm on sticks or crutches but I make myself do it as I know it's important but I have too pay for that an hour or two later . As for cooking and washing I'm not safe in the kitchen cut myself and burnt myself too many times . Washing isn't much better have fallen out my shower hitting my head on the toilet knocking myself out so only have sit down showers or take a bath when I can get in and out either way my wife does both . The worst thing for me and the most embarrassing is not being able to use the loo alone if you know what I mean . Because I'm fixed solid at the lumbar I cannot twist or bend plus the friggin pain This makes using the loo interesting and embarrassing .

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I’m concerned about your ability to care for yourself. Are you applying for PIP? From what you’ve just described, you sound like you should be entitled. Let me know, I’ll help you if I can.

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You have my every sympathy, it’s very sad this happened to you while trying to improve your chronic pain. Hope others can offer some helpful words

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Hi yes, I’ve been there done that got all the same and still suffering so bad, only they damaged a nerve and I’ve lost the use of my leg. Life is so miserable and painful for all these years. I had back surgery 16 years ago then was still suffering up and down over the years and then finally had the fusion and I’m totally worse like you.

I too would like to know if the Stimulator fitted would help. I know a few people who have had the S fitted but they haven’t had a Fusion. So it would be go to know for me too.

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Drs and Surgeon have advised me to have discs fused on my lower back but after reading about others having had it done the pain became worse I decided against it,so have had Spinal injections but the pain was not worth the limited relief I had ,so no more injections! I have pretty bad attacks where it feels like my spine is being ripped out, the diagnosis is Degenerative Spinal/Skeletal disease apparently it will only get worse!

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Hi delzek not sure but I think most of us on here have had the old fashioned fusion surgery . The younger generation of surgeons have newer more effective techniques not available at the time we had ours done . I'm thinking of one surgeon in particular sure he works from kings hospital . He is easy to find with a web search he replaces your disc with almost a carbon copy of your own disc . It is mechanical of course but it behaves exactly as your own disc does on a mechanical level you do not lose any motion . He has had fantastic results with people getting back to normal with full motion no pain . All I can remember is he is an Asian dr as in Chinese I think and works from kings London if I can find a link I will post it for you . Good luck best wishes Neil

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Thank you for that Doghouse6463, I know there are some great surgeons at Kings,I believe one operated o Gloria Estefan,s shattered spine and she doesn't even limp now, my friend from hospital (another patient) had the operation 5 months ago he is in more pain now than he was prior to his operation, I have a Degenerative Spinal/Skeletal disease so it's not only my back it's in my hips knees anklall of my bones. I would take a Chance if I knew the Surgeon had good success rates tbh. I think I am more terrified that something will go wrong or the pain gets worse.

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If it's a fusion your friend had from what I have read and researched they just do not work for pain . Fusion surgery only really works to stabilise the spine it's not a good option for pain . Unfortunately I think most of us suffer pain in lots of other joints too and other parts of our body . The nerves can fire off pain anywhere in the body . I too have ankle knee wrist elbow neck and thoracic pain along with testicle pain oh Jesus when you start talking about it you realise what shit bodies we have . It's a huge decision too make and not one that should be rushed . Ask lots and lots of questions from your surgeon get as much information as you can but at the end of the day the decision is yours and yours alone . Good luck with it I wish you all the best and hope it goes well whatever you decide . Neil

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Hi Doghouse. Backs do tend to be a popular subject for many of us on here? I'm on a crazy cocktail of meds - none of which seem to be working any more! But (thank the Gods) this week I've been referred for (another) MRI, to try to find what the latest problem is, and hopefully find some way to give me respite? I hope they can get you sorted out soon. 🤞 Doctors don't know we have pain unless we tell them, so keep on to them about getting relief. I suffered in virtual silence for almost 15 years, so by the time they did the surgery, the damage had been done! That was 20 years ago, and I'm still suffering! 😫

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Hi all thanks for taking the trouble to read and reply it's kinda nice to know people out there still care enough to bother with strangers . I know we are all part of the same club a wierd one I must admit and the criteria for joining is a bit shix but hey ho we are in it . And thanks jake for showing real concern it does warm the cockles knowing people like you still exist . Hopefully the sun this weekend will cheer us all up if not I know my pipe will with my good medicine in it will hopefully .

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HI Doghouse6463. Your story seems similar to mine.

Accident 1991 injured back fobbed off by drs, traction,physio,corset,pain meds,by 2004 could barely walk had private l4/5 l5/s1 fusion. Sent home 10 days stitches out and spinal fluid poured out of my back I was found to have spina bifida when they operated they glued the hole which didnt work. Emergency 6 hour op to locate leak and reglue. This left me with no skin and open wound. Back looks so pretty now!

Surgeon ways I have failed surgery and wish he hadn't operated. 2007 spinal cord stimulator at st Thomas's. Ok for 1 year then device moved, it was resisted but gave me electric type shocks. Removed whole device in 2008.

I now have 3 cervical herniated discs almost had fusion but my shoulder took precedent, shoulder acj removal of bursitis and discovered arthritis in ball and socket 4 weeks ago, extremely painful and just starting to be able to move it. 6 -9 months physio.

I have degenerative disc disease, arthritis in sacroiliac, fibromyalgia. Try not to take pain meds as none work or give me bad side effects. I am under pain clinic at kings who are brilliant.

Had to give up work in 2017, ESA support but just been declined pip on review 14 and 12 points to zero so my car goes back in 2 weeks.

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Bloody hell fran and I thought I had been unlucky I had same levels done I'm sure it's the cages that are giving me trouble . Mine too started with an accident got hit by a meschersmitt it was only a model though but at eight foot flying at 100 miles an hour it pinched a little . I really do wonder about the dwp they appear to be heartless monsters it terrifies me every time I fill forms in I hope you are going to fight them and the decision they made . I wish you all the very best and hope you find some relief and get your much needed vehicle back

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I had pain in knee,and left leg,foot from 2002. They said I had old injury and needed fusion on cervical,three disks. I thought it would help left leg because I didn't have pain, only upper arms after pain management. Turns out Ms was there and I think it was Ms and misled. Not sure but I feel I have bad genetic and Ms.primary- have not found pain meds yet but trying CB and medical marijuana. Thanks and much hope to you.

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