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Thanks for the welcome

userkaz
userkaz Member Posts: 5 Listener
Thank you to the lovely people who have replied to my post. The consensus of opinion regarding the source of my pain is anterior cutaneous nerve entrapment with right side diaghphram weakness but the abdomino phrenic dyssynergia posts talked about similar consequences to mine and I guess I was just trying to find something that I might be able to do for myself as nobody really knows how to treat the pain from this other than injections and they only work for a short while leaving me in immense pain the rest of the time. There weren't any hits when I searched for anterior cutaneous nerve entrapment so maybe I should create a thread for if someone else is unlucky enough to get diagnosed with this in the future? Let me know please because I haven't been in a support group before.
Many thanks again for your time 

Comments

  • Libby_Scope
    Libby_Scope Posts: 736

    Scope community team

    Hello @userkaz :)

    Thank you for joining the community, it's great to have you here with us. How are you today?

    I'm sorry to hear that you're in so much pain - did you get your official diagnosis from a specialist/GP? I've just had a look online for treatment strategies for anterior cutaneous nerve entrapment. This resource might be helpful for you:
    The article states that there's usually four methods of treatment (obviously this can be specific to healthcare access/different countries):
    1. Trigger point injection
    2. Chemical neurolysis 
    3. Pulsed radiofrequency (PRF)
    4. Surgery. 
    From what I'm gathered from your post, you've been offered the injections? :) I will also move your post into our rare, invisible, and undiagnosed conditions category, in the hope that your post will attract some of our members :) 

    If you have any other questions in the meantime, please don't hesitate to get in touch with us.

    Libby
    Online Community Information Coordinator
    Scope

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  • userkaz
    userkaz Member Posts: 5 Listener
    Thanks Libby.  :)
  • userkaz
    userkaz Member Posts: 5 Listener
    Oh and yes the diagnosis was based on the injections.  They are apparently the diagnosis and the first line treatment. Main problem is that the UK doesn't allow for repeat injections in the frequency you can get in the US so lots and lots of pain when the effects of the injections wear off and can't seem to get the specialists to listen/do anything about this. 😌
  • Libby_Scope
    Libby_Scope Posts: 736

    Scope community team

    Thanks for the additional information @userkaz, that's helpful to know :) 

    I can imagine that is frustrating, especially when you know that you need more frequent injections than you're currently getting. Have the specialists ever mentioned surgery at all? Would this be an option for you?
    Online Community Information Coordinator
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  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,632 Disability Gamechanger
    Hi again @userkaz - I've just been looking online about anterior cutaneous nerve entrapment syndrome (ACNES), & have just seen your comment about repeat injections not being offered here in the UK. I must admit that of the 2 studies published last year about this, one was from Canada & the other the Netherlands. The Canadian paper said ''ACNES is an emerging diagnosis, with estimated incidence of 13%–30% of the adult population. It is a syndrome characterized by chronic abdominal pain caused by entrapment ...... If conservative treatment with pain medication, botulinum toxin, or lidocaine injections is inadequate, surgical management is indicated.''
    The Dutch paper discussed injections, 1 a week for 4 weeks in 117 patients.
    So, ACNES seems not a rare disorder, rather one that may be missed if up to 30% of adults with chronic abdominal pain could have this.
    I also searched, & this post comes up if ACNES is searched for, so it's good you're discussing it.
    I wonder, if it's OK to ask, what sort of specialist diagnosed this, which may help another if they see your post?
    @Libby_Scope do you think this post would be better seen if in the Chronic pain category?
  • Libby_Scope
    Libby_Scope Posts: 736

    Scope community team

    Online Community Information Coordinator
    Scope

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  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,632 Disability Gamechanger
    Thank you, Libby. :)
  • userkaz
    userkaz Member Posts: 5 Listener
    I was referred to both gastrointestinal and pain management specialists and while waiting for an appointment with the gastroenterologist the pain management specialist asked if I wanted to try an injection into the rectus abdominis to see if it helped at all. By that point I'd been unable to be upright for longer than 10 mins max so I thought it worth a go and I was blown away when the pain just disappeared before I even left the room. He said that was my diagnosis but he is not allowed to do the recommended back to back injections under uk guidance rules but I believe he intends to challenge this but that will take time. Hope that answers everything 

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