I saw the pain management specialist yesterday who has been treating me for 2 years now yesterday. During this time he has tried various procedures for neck, thoracic, lumbar and SI Joint pain. A bit of success here and there but nothing to significantly ease the constant unrelenting pain I feel.
The last two procedures were a lumbar radio frequenting Lesioning in November and a RACZ Catheter Targetted Adhesiolysis with epidural in December. Yesterday's appointment was to discuss what effect these had and what now?
Sadly, I had no benefit from these very tough procedures. He has now said he has no other options to try and in a case this complex the only realistic step is to refer on to Guys hospital for assessment for a set of spinal cord stimulators.
I expected him to say this, based on what he said before the last two procedures but it was very very hard to hear and I was really tearful leaving the hospital. It feels like a huge loss, the loss of hope that I will ever do so many of the things I have lost along the way. It's been hard saying to my family what the outcome was - they, of course, wanted 'the cure' for me.
I'll get my head around this, I have to, there's no realistic option but it is hard stuff. The letting go of hope that something the medics can do to ease this awful pain.
I know it will be a long wait to get to Guys and the process of assessment for SPC is lengthy and tough so I will focus on the things I have started recently to deal with what I CAN do, pacing better and the Mindulness practice.
Sorry for writing such a downbeat post - just feeling very sad today.
Hoping everyone having as comfortable a day as possible,
Shirley
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Curlygirl54
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curlygirl - large box of tissues, shoulder and dollop of hope from me.
yes of course it is so so disappointing but he hasnt shut the door completely.
one thing you learn early on with chronic pain that things you used to do are just that - used to do. always easier to say than do.
you have suffered a major set back and every right to feel upset, angry, blame - almost like a bereavement. but like us all with a disability or health issues you learn to adapt, cope and use what you have.
put this down to another challenge which you will meet head on a you have done before.
Thank you so much for your heartfelt response - I do appreciate that you really get it.
Yes it is a bereavement and I've been going through this process since I was 18, I'm now 60!! On the up side all those years have taught me that I can manage, even when it feels as overwhelming as it has the last few days.
Not wishing to sound negative, trying to be a realist here - I have already seen many pain management docs, orthopaedic surgeons, neurosurgeons and neurologists over the 40+ years! but! you're right, Guys is a centre of excellence so who knows what they may offer!
I'll hold that little hope whilst I focus on acceptance 😉
Hi Shirley ,sorry the pain clinic can fo no more but on the subject of SCS ,I am on another forum (gor coccyx pain) and some people on there say this procedure has given them their life back.They have a trial girst which I am sure you already know about. The ones with SCS are now able to fo things they haven't been anle to fo before -as one woman said 'I can now be a mother to my child" maybe this is the start of a life with much less pain, a new beginning full of hope.Praying you are a suitable candidatd x
I don't mind you asking at all. I'm on Tapentadol, Naproxen, Pregabalin, co codamol ( for better days!) Oramorph ( for much worse days!) Zopiclone and Mirtazapine.
I've been on pretty much all the meds available including Butrans patches, versatile patches and capsicum cream 😁
My profile has got a potted version of the loooong history.
I've read about intrathecal pumps and to be honest I'd go for that before a SCS but I will take the advice of the Guys team when I see them. I understand it's a long wait tho.
Yes I was on Duloxetine Dan9878 but doc had to change it to Mirtazapine as I slid into a pretty grisly depression after Xmas and the 2 really brutal procedures. Climbing out of it now tho.
I am so sorry your meeting wasn't a positive one but the comment pippins made about the SCS is a positive one isn't it. I was reading about it when I was looking at Disc replacement and some of the recipients were over the moon with the results. Like pippins said you have a 6 week trial I think until you decide if you want the battery putting in permanently. You have to have hope Hun or there is no point in it all is there.
Hopefully a good letter from your consultant might help you to get a quicker appointment and once they see how much pain you are in and how much it means to you they may be able to offer you an alternative as Dan9878 said.
Please don't be despondent I am relying on you to help me when I start on the 'mindfulness' books I have got on my kindle.😊
I have both of these as samples on my kindle just finished my last book so I am going to get stuck in tonight and see which one I prefer and get the full book, wish me luck 😊
I feel for you with your son but I bet he is a teenager. I've had the broken hand scenario twice with my boy. He's 27 ! Ive been to casualty many timessince he was a wee lad.
Does anyone know about Full Catastrophe Living tapes or books? I also am at the bottom of the ladder, its like being punched in the stomach. If these are meant to distract me from my pain------its useless! I find it hard to understand, and do not consider myself stupid!
I hope you have as much success with mindfulness as I've had. The pacing is so so important . I was making real progress and then of course I got over enthusiastic and pushed myself to 'burn out'. Back almost to square one from 2 silly days. I'd managed to do without Tramadol for 2 weeks (hurray) and it now feels such a let down to go back.
I had a similar experience curlygirl with the pain clinic. Nothing we can do for you except medication. At least you can try the spinal stimulator and maybe less drugs. Anything must be better than the drugs !
shirley ,, may i comment personally on the SCS device being implanted,,,, ive had the procedure done in July 2014 and ive had to go back and get the wires in spine done because they moved,,,Sorry to say this to you when u are considering it but it has ruined my life,,, its supposed to give you 50-60 % pain relief ,,,, well i can honestly say im in 90% more pain ,,, i can hardly do anything ,,,,Please think before you get this done ,,,
Im sorry to sound so down beat on this but i am only telling my personal experience on this preocedure,,,,
I really appreciate your feedback - I want to make an informed choice if it's offered to me. I'm so sorry you have had such a bad outcome, what is the plan now for you? May I ask which hospital you had it fitted?
I honestly dont know whats next for me,,, they cant give me any more tablets as im at the max already plus patches,,,,all they do is send a rep to reprogramme and change the frequency ofthe wires in my spine,,,,its like a roll of the dice whether it works or not and so far it aint been good,,,, i had the operation done here in N,ireland ,,,,,
I hope u didnt feel i was trying to put u set against the idea,,,, i just want people to know that it can go wrong and i am one of those wrong times ,,,,,
I wish u all the best with whatever decision u do make and hope all goes well with you
I didn't think at all you were setting me against the idea, you were giving me the benefit of your experience which I appreciate. My heart goes out to you, we make these desperate decisions because we are desperate. I'm so so sorry it hasn't worked out for you and I hope sincerely that the medics have some ideas for a way forward.
Thinking of you and hoping you are having a manageable day,
Ah Shirley, poor you, boy is it painful when it's your neck or even anything in that area, sorry to hear your a bit down, I offer my sympathies and hope you will have a good day soon best Alex
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Pain management Team
Pain Management Referral 
Has anybody attended a residential pain management programme?
