Spinal Cord Stimulator update

[Curlygirl54]

Well folks, my decision day with the consultant at St Thomas' is done - I have signed consent form for trial surgery 😁

I met with different Consultant than the one who started me on the assessment process for Spinal Cord Stimulation back in June, but the one yesterday who made the decision with me to go ahead for trial has 25 years experience of SCS and seems to be top honcho at St Thomas'

He was an absolute gentleman, patiently answered my ( many!) questions and I felt his replies were straightforward and honest.

I'll be trialing a Nevro High Frequency unit which doesn't buzz or vibrate which I'm really pleased about.

He even walked us from the main pain management unit to the main hospital to take me to pre op assessment.

I should go for trial early Jan.

I'm feeling exhausted, excited and terrified - not to mention in huge pain from the travelling and the sitting in the hospital.

I'll keep you all posted as I progress through this.

Hoping everyone having a reasonable time pain wise.

Shirley

Xx

[Bananas5]

Oh tis bionic Shirley - well done on what I know has been a hard decision. So nothing whizzing or vibrating? Have to tie a bell on when it's on!!

Really am pleased for you and now everything crossed for the trial. Sure you will very suitable candidate. Have you skipping again yet.

Sooper dooper hugs. Loves yer loads

Pat xxxxxxxxxxxxxxxxx

[lowlife]

Hi shirley thats great. Think positive and let us know how it goes. X

[Curlygirl54 in reply to lowlife]

I certainly will thank you - will reply more fully tomorrow.

Exhausted after the events of the day and the pain from travelling etc.

Take good care

Shirley

Xx

[costabuck]

That's great news.

I've had my spinal stimulation unit in for more than 20 years and I haven't looked back. I was one of the first people to have one in the UK and it's saved my life. It obviously doesn't get rid of the pain but disguises it so you can manage it and function better. Keep us posted how you get on and if you want to discuss further just let me know. Good luck though with it all. Kx

[Curlygirl54]

I'm so pleased your SCS has given you such relief costabuck,

Do you have a high or low frequency unit?

I'm trialling a high frequency which I understand is 10kh ( for all you people who understand this stuff!) but I do know that this unit doesn't buzz or tingle

Fingers and toes crossed eh?!

I'll keep everyone posted.

Thanks again,

Shirley

X

[costabuck in reply to Curlygirl54]

I have my unit on 100mhz due to the combination of electrodes and pain spread. However, I also have several programmes I can use to do specific areas or specific pain. As I've had my unit for such a long time I can also change or play with the settings to get the best coverage and the right programme at that particular time. It does take a bit of getting used to though but there again mines been in for 20 years!

Let us know how everything is and hope it can give you some pain relief. Kx

[Curlygirl54 in reply to costabuck]

How do you find the unit? Is it percutaneous buttock or abdomen? I imagine it interferes with clothes and hurts if you sit back on it??

Sorry, I'll probably be asking you all sorts of random questions!

I'm so, so glad it's working for you and you've had it successfully all that time.

It's so good when people,stick around to tell positive stories.

Where you able to reduce meds significantly? And has your mobility improved?

Sorry, that's absolutely the last question this week!!!

Many thanks costabuck

Shirley

Xx

[costabuck in reply to Curlygirl54]

Ask away I don't mind!

My unit is my best friend and like any best mate you have your ups and downs over time but you always come back to each other in the end!

It doesn't get rid of my pain in all areas and aspects of my pain but what it does do is help me to function better on a day to day basis.

Once the operation is over be prepared for the most weirdest sensation! You'll want them to knock it off but once they knock it off you'll want it back on again! It does get a bit of getting used to but stick with it.

Also, be prepared to be frisked everytime you go through airport security!

I've had time to get to know my unit and although I initially had the internal electrodes placed for relief for my lower half I know have more electrodes placed for both lower and upper severe pain.

Once over the initial operation and the unit is working with you on the right programmes you'll be able to find the best settings for you and your unit for your pain. I must admit that I wouldn't be without my unit now for all the tea in China!

Initially, I was able to reduce my meds considerably but due to my problems and continued deterioration I've had to go back onto some of the drugs.

When I lie down when my unit is on I do have to reduce the levels of my unit as for obvious reasons, the electrodes are being pushed to connect to the nerves much more. You'll get used to working with your unit over time.

I hope that answers some of your questions but please if you have any other questions please do ask I certainly don't mind.

Kx

[28CS in reply to costabuck]

Wow , you absolute star Costabuck ,

I was considered for an implant for held back due to protocols between NHS referral and a private surgeon willing to treat me , but the hope it gave just knowing there is a potential help lifeline out there when the times in my favour just made me smile from ear to ear bless you

Very best of luck for the next 20+ years , and Curlygirl , go for it and every happiness it possibly offers you for a less painful future .

It’s always lovely to read positive threads , to share hope is itself an act of humanity and we all need that when in pain for whatever reason

Have a great week and thank you so much for sharing x

[Hidden in reply to costabuck]

wow...20 years! I had no idea it had been around that long.

[Susan1942 in reply to Hidden]

I had mine in 1991 so 22 years ago and was done in Dundee by a neurosurgeon. The first person in the UK was done in York. I was living in Fife in Scotland.. There was an article in the Sunday Times and she lived round the corner from me..

[maximoe]

Hi Curlygirl, I wish u all the luck in the world, Please do keep us all informed as u progress. Gentle hugs x.

[Curlygirl54 in reply to maximoe]

Thank you very much - I will do

X

[Curlygirl54]

Thank you so much for such a generous encouraging post.

I'm just still trying tonnage it all in.,I feel lucky to have the opportunity tho horrified at the thought of yet more surgery after all I be been through. BUT I know there are many people,on here who would give anything almost for this opportunity.

You won't find me grumbling guys, ( quietly maybe 😉) tho I know I'll be terrified nearer the time - terrified of what if it doesn't work.

One step at a time tho

Gentle hugs all

Shirley

Xx

[mlow67]

May I ask what is wrong with your spine please?

[Curlygirl54 in reply to mlow67]

Hi mlow67,

I've just copied and pasted my profile as Imfind it quite depressing to go back over it all. Basically I've had 6 prolapsed discs, multiple maker spinal surgeries and countless pain management procedures - but at 61 I'm otherwise healthy,my hand goodness!!

Currently being assessed at St Thomas's for SCS

SI joint disfunction - underlying hypermibility

2014 Mini micro discectomy L3/4 and L4/5 prolapse

Ongoing Pain Management

Plaster body cast for 16 weeks post surgery, readmission for rehab

Thoroscapular Fusion at RNOH 12/4/12 to stabilise shoulder.

Loss of muscle use re Brachial Neuritis- shoulder dropped, winged scapula.

Developed Brachial Neuritis immediately post op

L5/S1 Spinal Kinetics M6 Implant, Mr Gavin Marsh, Croydon

RTA Severe whiplash Sep 2009

L4/5 IDET 2005

C5/6 Fusion + Titanium cage 2002

C4/5 Fusion 1987

RTA aged 18

Best wishes

Shirley

[Bonni1]

Good x

[Curlygirl54 in reply to Bonni1]

Thank you x

[Hidden]

Spinal cord stimulation in chronic pain: a review of the evidence:

ncbi.nlm.nih.gov/pubmed/150...

[Curlygirl54 in reply to Hidden]

Thanks for taking the trouble to send this James - you will note that it is actually very old and the new devices, particularly the high frequency devices of the type I am currently trialling have far better results.

You may wish to look at Senza High Frequency results - it may offer more recent information.

Best wishes

Shirley

[Hidden in reply to Curlygirl54]

I shall now...

[Hidden in reply to Curlygirl54]

Oh. It's too new. Let all the other people moan and get things go wrong first. I never try anything first. Try and talk to people that have tried it. Read as much as you can but not on that site or from the Dr's who benefit from using it.

[Curlygirl54]

James,

I really dont like the rude almost aggressive approach you have with folk on this site. For myself, I didnt make the decision to have this trial lightly nor did the excellent team treating me decide I am a good candidate for the trial lightly. 6 months of assessments with pain management specialists, psychologists, physiotherapists and occupational therapists. I am an intelligent, mature woman who has been negotiating chronic pain for 43 years. the speed with which you fired your reply to me tells me you do not think before you 'preach'

I sent you the link to inform you of the technology that is available now since the study you shared is 11 years old. I was not suggesting that a decision is made based on what manufacturers say about it - as I said, I am an intelligent informed adult.

I am just as entitled to do it my way as you are and if you dont have anything encouraging or supportive to say to others on this site who are often struggling and vulnerable then please just quietly move along.

Thank you

[Hidden in reply to Curlygirl54]

To be fair, if you feel that I have upset you, I say sorry. But it's not ok to say 'how I talk to other members here' that's nothing to do with you.

What is a 'rude almost aggressive' anyway? That is subjective

and I don't agree. That's also ok. I did not preach either, the

site looked like an advertisement.

I'm not passive aggressive. I'm assertive. Maybe you are not used to that here. You asked me to look and I did. I took action. I shall tell you why

I came back so fast because I worried.

When I joined this site this is what people told me:

''I have had this or that surgery or this went wrong etc etc and now I'm

in more pain'' So many people here told me. I was shocked. If you don't care what I have to say that's fine. I'm not going out of my way to be nasty. I care about what happens because what people have told me has shocked me and broken my heart. I have little faith in these doctors because of what I have learnt being here. That's the truth. It's upset me.

[Curlygirl54]

I'm not getting in to this James

Please leave it there.

Thanks