Just had phone call from St Thomas's hospital, I have my first appointment there on 3rd June for assessment if I'm a candidate for SCS. Feeling very stirred up by the prospect - the hope / despair cycle is a very tough place. Last chance saloon eh?!!
I'm seeing a Dr Fennick - anyone got any knowledge of her?
Hoping everyone having a manageable day
Shirley
X
Good luck
Sorry I cannot give you any information regards above, I am a country bumbkin in the heart of the Scottish Borders
BOB
Sounds like a lovely place to be Bob!
Thanks for replying , I hope you are having a reasonable pain day.
Best wishes,
Shirley
Whats SCS?
Spinal cord stimulator. Best wya to describe it is like a TENS machine inserted along your spine using a wire.
If you can google it there's pictures and better description than I can give!
x
Cheers Paton and congrats to Shirley, hope your SCS relieves your pain.
Pats description is about it trekster22. It's a really gruelling process as I understand it. First step is the appointment with specialist, then a psychology assessment ( might be in yrouble at that one!!) then what they call a 'tech' day with the company who make the units and will be responsible for setting the programmes and ongoing 'tweaking' Then it's on to a trial surgery where the wires (or paddles according to type of unit) are fitted into the spinal space and the trial stimulator unit is worn externally for about a week to see if it works. Finally, if trial is successful, another surgery to implant the unit into the buttock or abdomen.
Recovery is long and very difficult as I understand it ( I belong to a closed Facebook Group which has given me lots of people's expefiences and they are really mixed. For some it's been wonderful, others just don't get any relief)
For the first 3 months no reaching, bending or twisting allowed and no raising arms above head. That only half affects me as one arm doesn't go up anyway after thoroscapular fusion!! The reason for all this is that until the leads heal into scarring they can move away from the very carefully positioned place for optimum pain relief.
I've got all sorts of feelings about it. I have had so many huge surgeries over 40 years now, my sons say I'm more metal than Mum 😏 so the thought of such a gruelling process which will take a year at least with all the waits in between appointments feels massive. Then of course there is the dread of what if I go through all this and it doesn't work for me. I've only recently clawed myself back from the darkness after the last chance procedures the local pain management doc tried, without success, before referring me on to London.
I know I'll never be pain free - I have too many major pain areas and the SCS can only cover 1 or if I'm lucky 2. But as we all know, a reduction in pain levels can feel like spring arriving after the depths of winter.
So, I've told myself il face the appointment, I'll listen to what is advised for me - I may not even be a candidate, they won't offer without what they believe is a reasonable chance of pain reduction as the cost to NHS is huge, then I'll take time to decide.
Sorry for long post, needed to share the turmoil.
Best wishes and thanks everyone for being here.
Shirley
Xx
I know a Fenwicks department store in York.! But like Bob just a country bumbkin living in deepest Scotland.
Good news though Shirley and I know you will tell us all how you get on.
Definitely positive hugs - you deserve a break.
Pat x
Hi Curlygirl,
I sincerely wish you the very best of luck for SCS @ St Thomas"s Hospital!
I hope & pray you find the answers you are looking for in June @ the Hospital.
I hope you don"t mind me asking what "SCS" stands for, as I have not heard of it myself? My son who has Rare Progressive Genetic Pain Dystrophies/Syndromes is currently awaiting "Funding" to go in to Hospital in London to help him with his conditions. I was wondering if it is SCS, he will be receiving, God willing?
In my thoughts & prayers
Best of Luck
Hugs
Lynn XX
Spinal cord stimulation or stimulator. Like a TENS machine inserted inside down your spine
Pat x
Thanks very much Lynn - have explained Spinal Cord Stimulation (SCS) sometimes known as Spinal Cord Modulation as best I can above. I do hope your son gets his funding and appointment soon. I've waited 3 months since being put on waiting list to hear so will be 4 months in total to first appointment. They are a centre of excellence tho so if they can't help me it's the knackers yard for me!!!
My profile has a brief ( as brief as I could make it!!) history of my journey, but still here, still finding a smile as much of the time as I can.
How old is your son? I wish you and him and all your family the very best of treatment. I can only imagine how hard it must be for you. I have 2 sons, now 25 and 23 and I thank God every day that it is me with this and not them.
My heart goes out to you.
Keep in touch
Very best wishes
Shirley
X
Thank you Pat, for your explanation of the abbreviated SCS. Very much appreciated.
I hope you get some sleep soon? I feel as if I"ve joined the "Owl Community!" recently with Insomnia!!
Sweet dreams
Lynn xx
At least it is peaceful with the owls Lynn! usually get lots done at computer but surprising how many people are around.
x
There's a lot of us in that community Lynn!!
I have no idea what I did before audible books ( the eyes won't focus to read with tiredness and meds) or Netflix!!
Let's hope tonight is a better night for us all 😊
X
Hi Shirley, Thanks for your reply, it is good that there are other members to communicate with in early hours of morning, it does"nt make you feel so alone!
Wishing you positive, healing, comforting wishes for your SCS Treatment, I hope it works for you?!
Best wishes
Lynn XX 
Hi Shirley hope it works for u I had it done but it was not for me
Best wishes Peter xx
Thanks very much for the good wishes Peter - I know it's a very long road ahead but it's an even longer one behind me so hey ho!
I'm sorry it didn't work for you.
Take care,
Shirley
Xx
hello ,,, may i just say i have had a scs implant done a year ago ,,, and to be truthful sometimes i think it really wasnt worth it,,, its not as great as i thought it wud be,,,, when u get the trial done first plz really see if it works for you b4 u agree to the full implant ,,,
i wanted it to get give me pain relief so much,,, i think it was mind over matter that i wanted it to work,, that i didnt actually realise i still had pain with it ,,,,, hope all goes well for you ,,,, Debs
Thanks so much for giving your experience Debs, I appreciate it.
I've posted above my thoughts - I've had so much major surgery that I'm not going into this lightly and I've given myself permission to say no at any point in the process as I think it may be easy to underestimate how gruelling the process is?
I hope you feel that it was worth it even tho you didn't get total relief?
I've no illusions that could happen for me, I'm too broken but maybe a reduction
Thanks again for replying
Shirley
Xx
Hello Shirley ,,, i really hope it all goes well for you if u decide to go ahead with the implant,,, i had the trial only for a week and went into hospital that day for the trial removed and the full implant done,,, alot of people have to wait mnths on that,,,,, being honest if i had to do it again ,,, i wud never have agreed to it,,, im still on the same amount of medication now as i was b4 the implant and have less movement so im no better off ,,,, the pain is still there only it feels different sometimes and i keep the scs device on 24/7 ,,, but dont go on my experience just weigh up the pros and cons b4 u make ur own mind up xx Debs
I'm so so sorry it didnt work for you Debs, it's a gruelling process to get to full implant even if it's done on the day trial is removed. I've done a lot of finding out, joined a Facebook group some months ago for people who have got or who are going though the process of SCS.
I have no idea what I'll do yet, I'm realistic about things ever being much better than they are now - and I don't say that in a negative way or a poor old me way. It's taken a huge amount of effort to get to rhis level ( and it's not complete by any means!) of acceptance and I think one of my main concerns is to start romaine yet again inkyntomreach despair again if it doesn't work for me or only works minimally.
I'll go talk to them, listen very carefully to what they recommend and then take some time to really think.
Thank you again for your input, it really helps and I'm so very sorry you didn't get what you hoped for.
Very best wishes
Shirley
Xx
Shirley,,, i still have my implant and there is no talk of it being taking out ,,, i wont say it doesnt work 100%,,, its just that i honestly was hoping for alot more pain relief,,, i think that when we get these implant we think they are going to be miracle workers,,,, theyre not,,, my problem is that my crps has mirrored itself to the opposite side of my original pain and the implant is only fitted for the first pain side ,,, only you can decide if your willing to go ahead with this decision as its you that has to live with it and i wish u well xxxx debs
Hey Shirley,
I had my trial done in February and although I didn't think it would work it really did, so was put on the list for the full implant. I had the implant put in last week, going to get my staples out today. It is till early days but the signs are good - I have had one or two hiccups where I have moved at a certain angle and it had made my muscles in my hand spasm (mine was put in for left shoulder and arm pain) but they give you a very strong magnet that will turn it off in seconds, so I did that and then sat straight, switched it back on and it was fine.
If you don't mind me asking where is your pan centre? I didn't get mine done at St Thomas, but by a specialist in Windsor. the company they use that supplies the implant is called St Jude Medical and their reps are great - they will be in the surgery with you and come round after to set the whole thing up and show you how to use the remote.
One piece of advise I can give you as a woman if it is for the upper body is to invest in the 'belvia' type bra (I found asda's to be the best and a lot cheaper @ £7.for two) they helped enormously and was able to wear one the day after the surgery as they put minimal pressure on the body.
hope this helps, feel free to message me if you have any questions or want to talk about it.
hugs and good wishes
Amy.xx
Amy I'm really grateful for your input - I'm so delighted you are through the worst of the surgery and the early signs are good.
Sorry I may be being a bit thick but not sure what you are asking re pain centre? If it's the hospital, it's the pain service at Guys and St Thomas' in London.
Thanks also for the bra tip - I discovered those a few years ago when I developed brachial neuritis immediately after a surgery for an artificial disc in my lumbar spine. The neuritis affected my shoulder, ribs and arm and I've since had to have the scapula fused to 3 ribs to stabilise my shoulder so HUGE nerve pain all around that area. Couldn't tolerate any clothing at all so the soft bra was a godsend when I discovered them. Also, being able to step into it as I can't raise my right arm at all or put it behind my back.
Sorry gents for the underwear info 😏
Thanks again Amy, I'm sure I'll be asking you all sorts of questions!
Gentle hugs,
Heal well
Shirley
Xx
Hey Shirley,
that's ok, should have used different words, I meant where the pain is worst hun, they really are a god send - at the moment I am not allowed to lift my arms either, so having to step into it also 
Had a bad day yesterday, the implant didn't seem to want to cover the area I was having the pain, and both wounds were stinging and burning (I think it's the staples - my body has a history of rejecting metal implants) so was very tearful, but feel better this morning after a good nights sleep.
Have been to clinic on Thursday, and they checked my wounds, should be having the staples out this Thursday coming, I am really hoping to be able to get in a shower after that - strip washing just isn't the same!
Cant believe how frustrating it is not being able to do much - even the laundry is forbidden do to the need to bend and stretch, being made to sit still and put my feet up.
hope you are doing well.
Amy.xx
Hi Amy,
I do hope today has been better for you. I know how hard it is to not be able to shower and bath. I was in that cast in my 'I'm a little tea pot' post for 4 months and although they were very cleverly able to change the lining bandage type stuff it was only a wash down from my partner all that time. Hair washing was really really difficult too as I couldn't even kneel over the bath because of the angle of my arm and the weight of the cast.
Hey ho, the time will pass and hopefully you will be very glad you were patient. I do so know how hard it is to look at things that need doing and just not be able to do them 😁
Thinking of you
Shirley
Xx
Hey Shirley,
Thanks for your kind words of support and understanding. Have only managed to wash my hair once so far, it is driving me nuts.
Sending good thoughts and I really hope they give you the trial.
Have a great day.
Amy.xx
Hi Shirley,
I know what you mean regarding 'last chance saloon'! I am also in the final stages of SCS assessment and at the end of the road, so to speak regarding treatments.
I have lumbar spine issues causing pain in back, hips & legs. At my last appointment it seemed I may not be getting the trial due to being a bit overweight, but will find out in 2 weeks (just received appointment letter on Friday) when I will either be rejected or approved for the trial.
Also a bit apprehensive, butI wish you all the best, and hope it helps should you go ahead with the implant.
All the best!!!
Hi Stampede187
I wrote a reply to you last night but it doesn't seem to be here?? Did you receive it?
Very best wishes
Shirley
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