I am still here!

Hello Everyone,

I haven't posted for a while but have been checking in with you all everyday and responding to a few posts. I've been quiet because I've been trying to get my head around the long process of surgery and recovery ahead as it looks like I'll be going for the Spinal Cord Stimulator surgery. I've been through all the assessments at St Thomas' and I see the surgeon on 5th November for final consultation and to get my list of questions answered before he puts me on the waiting list for the trial surgery.

I really, really, really don't want it - the thought of having the unit just under my skin poking out and just the idea of it makes me shudder. I have had so much major surgery and countless procedures for over 40 years - this feels like one too many ( actually two, because if the trial is a success then the permanent implant of the unit is a separate and bigger surgery) But.......if I don't try it I fear I will always regret it when I struggle so much, so frequently, with the ferocity of the pain and the limitations to my life.

So, it's take a deep breath time and do it.

In order to do it I decided that I've got to make sure that I don't slide into the horrible depression I slid into last winter after the two last ditch pain management procedures didnt work.

So, I actually had a holiday a couple of weeks ago, the first for 6 years! Went to a beautiful, tranquil little place in Southern Greece. I managed the journey with the excellent special,assistance at both airports and we just had a very quiet time at my pace - it was wonderful.

Tomorrow, I'm going to spend a few days with a very special friend -something else I wouldn't have done for myself previously. I can't wait. This time I'm travelling by train and have accessed the special assistance provided for the first time.

I'm really starting to recognise that I'm accepting where I am in my life and giving far more focus on improving my mood is the only way to manage the pain. It will never be my friend, it's too cruel, but all the energy I used fighting it as a ferocious enemy would be far better used trying to improve my quality of life with what I've got.

So it's been a long post! But just wanted you guys to know where I'm at and I'll be a bit more present here now. As I'm sure you've noticed, there's been a lot of thinking going on!

Hoping everyone having a manageable time.



12 Replies

  • Go girl go.

    All the best.

  • Takes a lot of courage to go through more surgery but just know you have made the right decision.

    Feeling you could make that wonderful holiday was amazing and a train trip too. Good to focus the sun shine peeping round those dark clouds rather than the tornado in the middle.

    With you Shirley holding tight to the silver thread.


    Pat x

  • Thanks so much Pat,

    That silver thread is very strong so we can hold very tight to it.

    Many thanks

    Big hugs



  • Hi and really hope things go well for you.I maybe having to have the same thing next year as running out of options for my shoulder injury,brachial plexus damage ,neuritis/neural tension plus CRPS .Mind you it's my left one so we could be a pair of bookends?Seriously have had several surgeries and people think it must get easier but its the mindset you have to get into that is the difficult part.Stay strong I am thinking if you.

  • Hi Littleffie,

    We could indeed be a pair of bookends as my pain is right side except lumbar and that's all over the darn place 😁

    I had a thoroscapular fusion in 2012 to stabilise my shoulder after brachial neuritis devastated most of the muscle in my shoulder. So you have my sympathy.

    Take care



  • Hi and yep if we didn't laugh we'd cry and that just uses up more energy!

    One car crash ,one bike crash,Rheumatoid Arthritis, Lupus, fibromyalgia, Ehlers Danlos ,thyroid cancer surgeries,first one went wrong and left scar tissue which is probably made the brachial probs,and now because of the CRPS in left arm no more surgery on it in case it maskes the CRPS spread.Pain is definitely a pain lol.

    Have a lovely day x

  • Well im so pleased that your getting out and about. We all need something to aim for or something to look forward too. Wouldn't it be great if your next procidure works. The trouble is that you have to try these things to find out in the first place. There is life after pain but we just have to find it and sometimes depression can stop us looking for it so go and enjoy yourself. You deserve it.

  • Thanks very much lowlife

    That sounds like the voice of experience 😕 I hope you're doing ok?

    I think we ALL deserve some better days - you included so I hope you get them.

    I'll keep you posted.



  • Hi Shirley, the trial and then implant really aren't major surgery! All under sedation and you won't remember a thing. Do try to look at it as a positive - as you say, if you don't do it, you'll regret it and always be asking yourself

    "What if......."

    I can see you've been through lots of medical procedures but honestly, this one is easy in comparison.

    Keep positive!!

    RayJ xx

  • Thanks very much for the encouragement Rayj, much appreciated.

    I know it's not a major medical procedure compared to so many I've had, it's the long spell of limitations after permanent implant that I'm not looking forward to as it will prevent me doing most of the things that make me Shirley. But I'm determined to keep my eye on the horizon and hope.

    You seem to speak from experience- do you have a SCS?

    Thanks again


  • Hi Shirley,

    Had an SCS that failed so am having a Ganglion Nerve Root Stimulator trial in Oxford soon - it's still technically an SCS.

    I envy you as you've said you went abroad and can manage a train journey and socialise!! I'm unable to do any of that due to physical & mental health stuff. I'm desperately waiting for the postman to pop my pre-op date letter through the letterbox so I can get the trial in.

    The restrictions after the full implant, in my opinion, are nothing compared to the pain we endure daily so please don't go worrying yourself about it changing who you are!!

    RJ xx

  • Thank you so much RJ for your very encouraging reply.

    I do know I am lucky to be able to have doe these recent trips. They have required detailed planning and have involved major payback with pain - but that doesn't matter, I've done them and enjoyed and they will buy me up through the time ahead.

    I do hope you get your prep letter very soon and you can get some decent pain relief.

    Keep in touch,

    Very best wishes


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