Complex Spinal Issue — Scope | Disability forum
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Complex Spinal Issue

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ROSIEROO1965
ROSIEROO1965 Community member Posts: 4 Listener
in Chronic pain and pain management
Hi I’m new to the site. I’m almost 57 and have suffered with back pain almost all my adult life. I had an L5/S1 laminectomy in 1988 and was fine for a few years. Then I got intermittent lower back pain. 2 years ago the pain had increased so was referred to orthopaedics but didn’t get past the physio gatekeeper who on my phone consult basically told me nothing was wrong. In January 2021 I asked my GP to refer me for an MRI which surprisingly she did. I had that in May 2021. The result came through and through a cash health care plan we decided to see a consultant privately just in case physio might help. So the MRI showed I have 2 slipped vertebrae, L5 and S1 and the disc at l4/5 is now prolapsed. I have spinal canal stenosis, nerve impingements on my facet joints, fatty deposits on my corda equina and a tethered cord. She said I need a spinal fusion. I’m on the NHS waiting list and am 9 months into a 12 month wait. I am in continuous pain, sciatica down my right leg and bladder issues. I’ve been referred to pain clin and I’m 13 weeks in to a 40 week wait. I take duloxetine, etorocoxib and now butrans patches none of which are touching the pain. I’m allergic to tramadol and codeine. Sorry for the long rangy posts but any other suggestions regarding other types of pain relief?
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  • Ronnieb
    Ronnieb Community member Posts: 11 Connected
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    Hi 

    hi I have same condition and the pain management course is very good for mindfulness and help with suggestions in terms of medication.  I have tried lots of alternatives but what I find is have very mild relief is gabapentin does help.  I did try amitiptyline but this made me feel like a zombie. 

    I hope this helps

    Ronnie
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  • ROSIEROO1965
    ROSIEROO1965 Community member Posts: 4 Listener
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    I was on amitriptyline for years. Didn’t help the pain but I slept fantastically! Gabapentin I tried last year and sent me into the depths of depression so they had to wean me off it pretty quick. Fingers crossed for the pain management clinic then! 
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  • Godiva
    Godiva Community member Posts: 12 Connected
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    Hi, how are you doing now?  Have you had your surgery yet?
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  • Cartini
    Cartini Community member Posts: 1,108 Pioneering
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    ROSIEROO1965 said:
    I was on amitriptyline for years. Didn’t help the pain but I slept fantastically! Gabapentin I tried last year and sent me into the depths of depression so they had to wean me off it pretty quick. Fingers crossed for the pain management clinic then! 
    Snap! I have lumbar &  cervical spondylosis and lumbar stenosis.  Amitriptyline doesn`t touch it but, for the first time in my life, I`m sleeping like a baby :D
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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
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    Glad to hear you are managing to get some more sleep @Cartini :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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  • ROSIEROO1965
    ROSIEROO1965 Community member Posts: 4 Listener
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    @Godiva no not even seen the consultant yet. I rang earlier this week and the waiting list is 70 weeks and I’m only 54 weeks in. I cried 
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  • Godiva
    Godiva Community member Posts: 12 Connected
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    I feel for you, hang on in there you are getting there x
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  • Ronnieb
    Ronnieb Community member Posts: 11 Connected
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    I did wonder why I was feeling very depressed, I am lots of antidepressants. Maybe I look to get off gabapentin x
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  • ROSIEROO1965
    ROSIEROO1965 Community member Posts: 4 Listener
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    @Ronnieb the Pregabalin was so bad for me. They upped my dose and within 3 weeks I was almost suicidal. The gabapentin is similar I believe 
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,493 Disability Gamechanger
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    Make sure you speak to your doctor before coming off of any medication @Ronnieb :)
    National Campaigns Officer, she/her

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  • Tori_Scope
    Tori_Scope Scope Posts: 12,493 Disability Gamechanger
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    Have your suicidal thoughts subsided since you were weaned off of the medication @ROSIEROO1965?

    I'm sorry to hear that you're still waiting, and that it's caused you some upset and stress. Have you been able to receive any support in the mean time? 
    National Campaigns Officer, she/her

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