Spinal Cord Stimulator update

[Curlygirl54]

Well, this thing that has been on the horizon for such a long time now is right in front of my nose! I'll be going into St Thomas' Thursday afternoon to have the trial stimulator fitted on Friday. It's a two week trial of a Nevro high frequency, which means there will be no buzzing or tingling - which I am very pleased about.

I've been reassured by the skill and kindness of all the St Thomas' team and I know I'll be in good hands - tho that doesn't stop me being terrified 😁 I've been through all the assessments with Consultant, Psychologist, Physiotherapist and then back to the Consultant. ( I wasn't required to do the 2 week pain management programme as some people are as what they teach I am already doing)

I'm not looking forward to the procedure - I've had so much major surgery and countless procedures I could really do without another operating theatre but, nothing ventured etc!!!

The biggie scare is how I would feel if this doesn't work as it really is last chance saloon. I do feel very fortunate to have the opportunity to try tho.

So I'll be trying to get my head in the zone this week and be ready, tricky tho with reducing meds in a bit of a hurry as I didn't know about appointment until 2 weeks before the day.

I'll keep you posted folks.

Hope all as comfortable as possible

Best wishes,

Shirley

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[Danslatete]

Good luck and I hope it works for you!

[Curlygirl54 in reply to Danslatete]

Thanks so much Danslatete - really weird ( and scary ) feeling to think this time next week I'll be wired up 😁

[Hidden]

Hi Curlygirl54,

I wish you all the best next week, I really hope this works for you!

[Redhots7]

Reducing meds is tricky, hope your doc has given you instructions on how much and when 😘

[Barnclown]

Wishing you every possible ounce of good luck. Hoping you'll let us know how things go🍀🍀🍀🍀

[sharonb45]

Hi

Had mine fitted in April and all is good at the moment, hope everything goes well for you too.

Sharon x

[Curlygirl54 in reply to sharonb45]

Thanks very much Sharon,

Where did you have yours done? What sort of unit do you have and what was your recovery like after the permanent?

Sorry so many questions!

I'm really pleased you have a good result - it's quite an undertaking really isn't it.

Gentle hugs

Shirley

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[Curlygirl54]

Thank you everyone for your good wishes, I'm worried, of course - be a bit strange to not be!

I'll definitely keep you updated tho.

Thanks again

Shirley

Xx

[misty14]

Hi curly girl

Just want to wish you luck for the stimulator op. Your very brave and I hope it goes well!. Just wanted to add that I have an American Penfriend with one and it has helped her pain greatly over many years!.

Good luckX

[Curlygirl54 in reply to misty14]

Thanks for the encouragement Misty14 - I'll keep you posted, hoping to report good news like your pen friend 😊

X

[RAYJAYC]

Hi Shirley

Try not to be scared......

My experience of having the trial insertion was smooth - it's the walking about with a slightly cumbersome battery pack swinging all over the place that was the problem! As it's got an intermittent flashing light on it, some people did look at me bemused sometimes (the weather was warm so I only had a t-shirt on and preferred to have the strap & pack on top of it) but that's all.

Yes you do have to be mindful whilst the trial is in to ensure you don't put any force through the stim' itself and the wire from your back but it's absolutely manageable.

There is a disconnection point from the battery pack to the anchored wire from your back which tended to release during the night but it's got an alarm so if you're actually getting some sleep, it wakes you which can be annoying!!

Otherwise, I'm sure you'll sail through it and I'm hoping it's a success for you.

Keep positive.

RAYJAYC

[Curlygirl54 in reply to RAYJAYC]

Hi RAYJAYC

Not, scared as such, apprehensive of course. I think I've got my head around how awkward the trial 2 weeks will be and the wardrobe challenges and the joy of bed hair for two weeks !!!

Hopefully it will all be worth it

Would you say your s was. / is successful,in reducing pain? Even some reduction would be very welcome 😊

Thanks again

Shirley

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[RAYJAYC in reply to Curlygirl54]

Hi Shirley

I rated mine as a success as, like you say, any reduction is very welcome but it wasn't as high a percentage as Tommy's class as successful so I had mine removed! 😩 The book you get to fill in with rates out of ten on the different settings is then calculated to get an overall percentage - their guidelines state what is a success or not. Unfortunately my view wasn't taken into account as to what was a success!! 😡

I'm now on a waiting list for a DRG stimulator at The JR hospital in Oxford.

RAYJAYC

[nedd]

may the force be with you and your Stimulator. And may you be very happy together. Good luck.

[Curlygirl54 in reply to nedd]

Thanks very much Nedd,

The days are galloping towards the trial - feeling anxious, of course, am sure most people would be I'm sure.

The trial is for 2 weeks so I'll know in a short time how the new year is likely to pan out for me.

Hope,you are doing ok?

Best wishes

Shirley

X

[Boozybird]

Best of luck S, always hard to get the feelings in the right zone but wishing you a fair wind and all the best. Do keep us posted. 😜

[Bananas5]

With you all the way Shirleykins but sorry someone ate the grapes!

Just remember to do as you are told.

Sooper hugs

x

[Curlygirl54 in reply to Bananas5]

Thanks so much Pat, don't worry about the grapes, just as long as no one has eaten the jelly babies!!

Yelp, I promise I will do everything by the letter, I'm not wasting this opportunity 😏

Big hugs right back atcha ( as the young people say!!

Xxx

[Hidden]

Hiya Shirley,

I've had a S.C.S fitted for the last 3 nearly 4 years and it changed my life. It helped cut my Medication by 3/4 as the amount of morphine plus others were at ridiculous levels.

It was a god send, the only problem I had was it took 3 attempts to get it into the perfect spot but once there it's amazing.

I really wish you good luck and hope it works well for you.

Have a very merry pain free xmas.

Best wishes Darren x

[Curlygirl54 in reply to Hidden]

Thanks so much for the encouragement Darren, I'm so pleased for you that all the persistence paid off 😊

Sadly I'll be back to where I am at Xmas because the trial is for 2 weeks, then if it's successful I go on a waiting list ( yes another one 😁 ) for the permanent implant, how cruel is that??!!!

Thanks again,

Enjoy your new found freedom

Shirley

X

[Curlygirl54]

Hi Folks,

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

[Hidden in reply to Curlygirl54]

Hi Shirley

I am so sorry to hear what bad luck you unfortunately suffered after the part success of your trial S C S.

I had thought about you and was wondering and hoping all had been a great success for you and that you'd have been lucky enough to have had the full implant done in time for Xmas after a successful trial.

It has really saddened me to read what unfortunately happened. With the reduction in your pain scores as well.

The one positive to come from it is they know exactly where to site it for the best response when you all infection free and after your part success they will probably just go straight ahead with the full implant for you.

That will cut down on your post op recovery pain and they will most likely cover you with antibiotics if they think there's a risk again.

It would be unlikely as you wouldn't have an open site though.

I pray for you Shirley that you have a speedy recovery and are back to fighting fit as soon as possible and they make you a priority case in the new year.

May I wish you all the best and hope you have a very merry and lovely Christmas and wish you and your family all the best for the new year.

Have a pain free Xmas ( an odd glass of wine might take the edge off)

You've a good excuse it's Xmas.

Take care Shirley

Best wishes Darren x

[Curlygirl54 in reply to Hidden]

Hi Darren,

Thanks so much for your really heartfelt message. Yes it was bad luck and it's not great being back to the same old pain but at least I know it works so will be pushing for a review appt as soon as possible after new year so I can then get on waiting list for the permanent implant

They always use IV antibiotics in theatre and I had to take oral antibiotics for a few days after the trial SCS was fitted but, as you say, there won't be the open incision where the leads exited for the trial when I have the perm surgery. Wow, that felt funny when I wrote 'when I have....' Perhaps it is real?!

How are you doing?

I wish you a really happy Christmas too and as comfortable a time as possible.

With sincere thanks

Cheers!

Shirley

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