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Diagnosed 8 months ago - never thought pain could be so bad

I'm in the UK, fortunate to have private health insurance so had an MRI to confirm this. No chance on the NHS - treatment is pain killers and wait until it goes away....

Lasted about 5 months last time. Waited it out. Been ok for prob 5 months but its back. Getting steadily worse last few weeks.

Co-codamil/naproxen dont help much.

Never knew back pain could be so bad :-(

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Comments

  • Hi @paulfoel

    How are you doing? Fellow UK member.  Also dealing with stenosis,  cervical, C5/C6.  And lumbar L5/S1 disc impingement. Unfortunately I'm on the NHS...You can imagine. 

    Nerve/back/muscle pain is brutal. We can relate. You're not alone.

    I've not had the best experience with doctors over here either....

    Are you under a neurosurgeon? 

    Take care 

    Angie 

  • Hi from Wales!

    Yes seeing a consultant privately. Had MRI to diagnose. C4/5. Had intraforamil injection just over a week ago - doesnt seem to have done much.

    GP is useless. Im on co-dydramol, naproxen, and gabapentin now. Its a fight.

    Consultant has offered operation as an option. Not so good for me - I'm a self employed IT consultant so no pay. Quite a few weeks I understand.


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  • angie29angie29 Posts: 55
    edited 11/07/2019 - 7:50 AM

    @paulfoel

    Hello from Scotland!

    Have they offered you any other options besides surgery? I'm curious as to why they have straight out offered surgery? Did they give you a reason. 

    GP's are useless in my experience as well, but sometimes you get lucky by seeing a different one. Perseverance and patience (not easy on the NHS for sure).

    I'm currently awaiting a neurosurgeon appointment, probably be in a month or two. But unless it's unbearable or life threatening I'd rather avoid surgery if possible. 

    How do you feel about surgery? 

    Keep us posted and take care. 




  • You both have my sympathy.  I too am in the UK.  I have to say that I am a lot further down the line than you.  I was diagnosed a few years ago.  I have spinal stenosis in the region of L5/S1 and cervical stenosis C4 through to C6.  Both are classified as severe.  I am now severely disabled and need to use a wheelchair when I go out.  I have had about five MRI's over the past few years.  I have been offered surgery but due to my age (80 next month) I have been advised that the recovery period would be lengthy and liklely to be very difficult. So I was advised against it.  Opiate patches control the worst of the pain and I find my adjustable bed very helpful when I have a particularly bad day.

    I am assuming that you are both younger than I.  You need to approach this problem in stages, the first is to get to see a consultant neurosurgeon on the NHS.  The only way to acheive this is to become a pain in the arse.  Remember the golden rule 'the squeakiest hinge gets the most oil.  Keep on going to see the GP lay it on thick.  Tell him the pain and disability is beginning to affect your wellbeing and mental health.  Demand, nicely, that he refers you to a consultant neurosurgeon.  If you have MRI's and X-rays on disc and written reports from earlier examinations show the GP.   Once you are in the system, at that stage you will start to bless the NHS.   Unlike others on this site you will not be faced with arguments with Insurance companies and crippling bills for treatment. Meanwhile you will find lots of information and support on this site.

    Good wishes to you both and let us know how things progress. Somerset John

  • @Somerset John

    Thank you for that advice, you clearly understand the pain (I'm so sorry) and our broken system over here.

    How long have you been living with stenosis if you don't mind me asking ? 

    I'm 44 but some days feel 104.

    It took me a year just to get a referral for a neurosurgeon.  And the waiting times are 18 weeks.  That said,  at least I'm "in the system" now.

    I had to see 3 different GPs as my own GP was less than useless...they have zero understanding of how bad the pain is or how it affects our lives. I highly doubt I'd be prescribed the opiate patch,  but I'll surely ask.

    It takes a month just to see a GP up here...

    How are you coping day to day? Are you managing? Do you have friends and family around you?

    Once again thank you,  and best wishes to you too.

    Take care 


    Angie 

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  • @SomersetJohn @angie29 I'm 51. Overweight which doesnt help :-( 

    Like I said, luckily I have private health insurance so getting the MRI in the first place was easy enough. A week wait. I met with the consultant and basically he said it was up to me totally but the options were

    1. Do nothing

    2. Have the injection.

    3. Have an operation.

    This was 10 months ago. It went away so I did option 1. I even did  a 25k sponsored walk in the Beacons it was fine. 

    Two months ago it was back with a vengeance though. Worse than ever. I had the injection 2 weeks ago. no change. Got gabapentin, c-dydramol and naproxen off GP.

    Useless beyond belief. They made me attend last week - took me days to get an appt then I was lucky. Went in - "dunno why your down for a review you could have ordered this using our online service". They do an online service which is good in principal but they often screw it up. This week I noticed they've prescribed me 10/500 co-dydramol when previously I had 20/500. Arggghhh!

    As for op. LAST RESORT. I'm a self-employed IT consultant. No work no pay. Can't afford 6 weeks or whatever with no pay. One week in hospital fair enough but not sure if I'd be able to work from home after that or whether my client would agree.

  • Sorry for the slow response to your posts.  I repeat my earlier advice, become a pain in the arse eventually you will  win just to be rid of you you will be referred on.  In answer to Angie I was first diagnosed ten years ago by a consultant physiotherapist, a wonderful guy who really understood the condition and the pain it can cause.  He gave good advice.  Because of other problems with my spine he repeatedly said, 'Whatever you do stay away from the guys with sharp knives'  He told me the condition would get progressively worse but he was unable to say how slowly or quickly that would happen. Thankfully it has been a fairly slow process.

    My medication is Buprenorphine  15mcgs an hour slow release patches.  I take other painkilklers when required.  I have a wonderful wife who is my carer.  Fortunately we lead a quiet life, we've never been ones to travel far and wide.  I have an electric powerchair and an adjustable bed which is a boon especially when I have a bad period I can lay on the bed with my feet up high and that always helps.   I have an electric lift in the back of my Grand Picasso so I can take my powerchair when we go out.  I can walk but only a bit around the house.  I find travelling anywhere difficult and the state of the roads and pavements doesn't help.  Don't let me put you off surgery completely should it be offered.  You have to make a decision based on your circumstances.  I will however advise you both to research on this site and others exactly what is involved with the particular surgery.  There is also a lot on Youtube.   Again my very best wishes tom you both.  Keep in touch.  John

  • @SomersetJohn

    Thank you my friend.  For your reply, information and advice. 

    I'm sorry you're going through this,  but I'm glad you have a wonderful wife and you are managing your pain and conditions.

    For me, right now, surgery would be a last resort. But if it comes to it, if it needs to be, then I'll have no choice. I'm also dealing with L4/L5 bulge and L5/S1 bulge with nerve impingement. 

    It's no fun, but we're not alone. I'm very grateful for this forum and those on it.

    Take care and stay in touch.


    @paulfoel

    I definitely second what John advises. Do NOT give up, keep at them. I know from personal experience just how long it took for me to get a referral, my GP was BEYOND useless.  But I wasn't adamant,persistent  or forceful enough. 

    You need to really lay it on thick and be a pain in butt....they WILL eventually refer you. Like John said,  even if it's just to get you off their hands. Tell them you can't continue living like this. 

    It makes no sense to reduce your pain meds? Go back...see a different doctor if possible. 

    Take care and let us know how you get on. 

  • @angie29 Thanks. I guess I'm lucky I've got private health insurance so don't need the referal. Drugs on the other hand, I do need GP for.

    The lower dose thing was a mistake by the GP. Got worse when they did the right dose and I took it to pharmacy the GP had forgotten to sign it. BRill that was. So a week without all my meds.....

    Still on co-dydramol. GP not givng me tramadol at all.

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