Thought I'd update as its been a roller coaster of emotion over the last week or so.
When I got to hospital I was told I was having a tunnelled trial, where the leads for permanent implant are tunnelled in the opposite side of the lower back to where the permanent implant would be sited ( to keep the perm site free of infection)
The downside of this is it hurts like hell where the leads are but the upside is I was told permanent implant has to be done within 3 weeks if trial successful!!!!! Not what I Was expecting! So the first few days I was extremely sore in the post op areas but my underlying chronic pain scores went down significantly. I was realistic and didn't expect to be pain free and the numbers I was at was manageable after the off the scale numbers I have lived with for decades. I managed with far less medication and I was able to move around more and actually had some sleep!!! I almost hadn't remembered what that was like.
I went back on day 5 for review and was fully expecting to hear very positive news and we would be arranging surgery for permanent implant before Xmas. It was a real shock when the nurse was changing the dressings she called in the doc and that doc called in the senior doc and there was whispering going on behind me and Incouldnt see any of their faces as I was face down on a couch. Eventually the senior doc said they were really really sorry but they was a hint of redness around where the leads were exiting my back as the leads had tugged slightly and they were very concerned about infection. They couldn't take the risk of permanent implant so said I had to have everything removed asap.
With a very heavy heart I had to go back to theatre on Friday to have everything removed and of course my pain scores are now back to where they were, on top of two lots of post op pain and my neck and shoulder very very unhappy about 2 face down ops in 7 days ( Ive had two neck surgeries and have metalwork in my neck and have had a thoroscapular fusion also)
This is a set back, the permanent implant will happen when docs are happy there is no trace of infection. It's just really hard to get my head around the disappointment, tho I know I will.
Thanks everyone for all your support,
Very best wishes
Shirley
X
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Curlygirl54
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So sorry to hear this sad news.We all want to be in less pain and to be so close to getting something that helps and then having it taken away is heart breaking.
Oh Shirley, so sorry to hear this. So disappointing for you! Gah! disappointment sucks! Sending hugs... hope you manage today better than yesterday but not as good as tomorrow! xxx
Lovely reply thank you Boozybird - its been tough, I wont deny. 2 theatre trips in 7 days with all that means to my neck and shoulder pain. First time round it felt worth it as the SCS seemed so positive.
Now I'm left with a very dodgy neck and shoulder, my old pain back ( with a vengeance!!) and the post op pain of removal of leads and tunnelled leads - uggghhh
Hey ho, I was potentially going to be dealing with 'what will I feel like if it doesnt work?' and I'm not so thats very very fortunate.
The trial feels like I dreampt it now! I'm so pleased its all recorded on paper as I could easily believe it didnt relly happen.
Roll on 2016.
Hope youre having a reasonable time my lovely? Think about you often
My friend and I often laugh about that scene in one of the monty Python films where some knights are sword fighting and one chops the arms and legs off the other who is shouting "bah! It's just a flesh wound" until he's just a head on the ground! And still shouting! Lol... It came to mind as you describe the nightmare of what you've just been through. Sending you bigger hugs (it's not 'just' a flesh wound! it's bloody hard what's just happened to you) and visualising you with one of those large bean bags that you wrap around your shoulders nice and warm straight from the microwave! Breathe... Cry... Shake your fist at the ceiling and then if you can have a lovely Xmas sherry to warm yourself. Xx
Huge apologies for late reply.,I don't know how I missed your lovely supportive message and it made me belly laugh - which I'm sure was your intention - thank you 😊
The hugs were very much appreciated, thank you, the fun - well the fun was just fun, that thing that pops up from time to time reminding me who Shirley REALLY when she isnt awash with pain and meds, meds and pain.
I'm putting one foot in front of the other at the moment, but good news is that both sets of stitches are healing well without any sign of infection - all completely clean and dry so hopefully I'll get on the waiting list for New Year Jan ("she,said, crossing everything!)
The neck,wrap,was lovely - thanks for the great idea.
So glad all is healing well - you are a real trooper Shirley and an inspiration to the rest of us ole growlers.... Keeping my fingers and toes crossed for you for better luck in January. Xxxxxxx
That's a real bummer BUT you now know that the SCS does work for you so keep that 'positive result' in your mind!!
Another setback, another day!! Same s@#t, different day!! The only slightly 'good thing' from having chronic pain is that we take disappointments in our stride (so to speak) - it's such a regular occurrence that we're professionals on them!! It's not good and certainly isn't fair but it also isn't anything new.......
Take a breath and tell yourself it's only a few more weeks until the permanent SCS goes in! There is a little light in that tunnel!!
It's all a bit rubbish at the moment - I'm waiting patiently for my date for my DRG stimulator trial - almost mugging the postman each day!! Just been told I've got sacroiliitis in the right joint too so am on ANOTHER waiting list for injections into that now!!
I hate wishing the time away but I so want Christmas to be gone so the waiting is on the home straight so to speak!!
Getting more and more fed up but at least I know some hopeful relief is on the horizon!!
Nearly mugging the postman / patiently??!!!! Hmmmm maybe not so patiently but totally understandable!
I totally agree, I want to get my St Thomas' review of whether infection clear or not done so I can get on waiting list for perm but of course they close down for a long break the way the bank hols are this year.
You and I in limbo - not a great place to be eh?!
It feels so hard to be jolly around my family and not bring everyone down. They are all excited about me getting the perm but only us guys on here can really understand how it feels to live with this stuff day after day and the SCS will only bring me down to pain levels that people other than is on here would think were intolerable.
I know this post reads negatively and ungrateful for the potential improvement ahead. It's all the years that have gone before and 2 surgeries in 7 days that are impacting tho.
Sorry, that was a bit of a rant 😳
Just had 'words' with my partner - he doesn't get how the last couple of weeks have been for me. Just because there may be some improvement ahead, after I've had yet more surgery and a 3 month recovery with major restrictions - somehow I should be skipping with delight. Well, I'm not!
Just want to say how sorry I am at the outcome of your stimulator trial!. Oh the cruelty of showing you improvement and then snatching it away!. You have to be mentally tough to cope with that alone but they have to be careful with infection don't they?. Back to the painkillers and fingers crossed you have it implanted soon in the New Year. Take CareX
You must be feeling so low right now. To go through all that pain then to feel relief then back to what you were must be so hard for you. Lets hope they find a way to keep the infection away and could maybe try again. Keep thinking positive. X
Yes I am low, it's been a bit of an assault on my body obviously but I'm trying to focus on the positive which is that I can have the permanent implant when the docs are happy there is no sign of infection at all.
There was always the potential for it not working so I'm not dealing with my worst terror - the all hope is gone terror and this is as good as it gets.
At the moment the whole thing feels a bit surreal - almost as tho it didn't really happen it all happened so quickly!
2016 will be here before we know it and the post op pain eases a bit each day. Stitches in both sites seem to be healing well with no sign of redness or oozing so I think the wonderful team at St Thomas' caught it in good time 😊
Oh Shirley . That's not great news. Its so hard when you have had an improvement and have to take a backward step. I feel for you. But you will get the implant eventually and you now know it works for you. Chin up.
Chin is definitely trying to stay up - would be easier if I didn't feel so crap from the effects of 2 face down procedures in 7 days 😁 My poor wonky neck and shoulder screaming. But both sites of stitches are healing well and apparently look clean and dry so looks like infection didn't take hold so hopefully they'll give me the go ahead fairly early in the new year.
It all feels a bit unreal at the mo, didn't have the improvement long enough to get my head around it and it sort of feels like I dreamt it, but I know I didn't, it's all documented. Pain scores that the average person would find intolerable but we would regard as bliss after what went before!!
I know this Shirley. I sometimes get acupuncture which works well in giving a reduction in pain that makes me grin but is still requiring MST and still hurts. But to me its great. But I can't afford that much for just 3/4 days.
Aww so sorry this trial didn't work this time but I suppose the last thing you need is a raging infection. Keep that chin up and just think when it does work this will all be a distant memory.
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