Spinal cord stimulator – questions

[Sarah]

Hi Paul.
Finally the Nevro is doing its job. New battery site has settled well. Bit awkward to charge, but as on low frequency every few days is enough.
The rep appeared at pain clinic and reprogrammed again, for the first time the buzz has reached my feet. Still have pain at a almost manageable level in day. Nights still bad as ever. Just short of 1 year from implant!

[PaulT_99]

Thas great to hear. Im just coming up to 1 yr post implant as well.
Last night before bed i was actually in tears with pain. The pain was of the actual implant area. Jesus it hurt so bad.

Slept on my stomach all night and its much better this morning.

[AVK]

Does anyone have either the pain nurse email address at St Thomas or the leaflet they gave out on the one day tech day that details what you will be able to do week by week after the full IMPLANT??

[PaulT_99]

Hi AVK, the pain nurses email is on this thread, back a few pages.
But you should not really email them unless you are a patient.

The SCS PDF is on the St. Thomas website under pain management.

You can pretty much do what ever you feel like right from Day. Just NO bending.
I think you can start bending you back at about 4 weeks, but only a little bit.

I was back at work by week 8, sat at a desk. But be under no illusion, the operation is very hard on your body and recovery. You are having 2 separate operations within 2 weeks of each other.
My second one was about 12 days after the trial. Thats the toughest physical experience ive ever been through.

[AVK]

I’ve had my Scs now for 4 weeks but have yet to receive my card. I was also advised that the pain nurse would provide me with a letter to show at the airport but as yet nothing has been received.

Has anyone else had problems getting the documents to show you have the Scs implant or can give advice on how to get the card, many thanks

[PaulT_99]

My Card was given to me before i checked out of Hospital. It is part of the kit included in the Nevro HF10 Box.
Did they give you the whole box as well with the waist band, Notes, and a USB key with documents on it too.?

[AVK]

I didn’t get the card. I was given the box with all the chargers but no card

[PaulT_99]

AVK, you need to chase your hospital then.

Here in the UK you have to have a implant card. My dad has one for his pacemaker, and i have cards for both of my artificial hips too.

[AVK]

Hi everyone, I’ve had my Scs in since Sep 19 but have started to suffer really badly from tinnitus, has anyone else had similar side effects??

[Jan Sadler]

Hi AVK
I don’t have a spinal cord stimulator but I do have tinnitus, had it for years and have learnt to ignore it. Like many things, it’s worse if you focus on it.

In case you haven’t seen it there is some information here about SCS and tinnitus:
https://www.ncbi.nlm.nih.gov/pubmed/31186971

And more information from the NHS about tinnitus here:
https://www.nhs.uk/conditions/tinnitus/

There are also some support forums specifically for tinnitus, but bear in mind you will be reading a lot about ‘worse case scenario’ on forums.

I hope the SCS is working for your pain.

We wish you well – and let us know how you get on.

Jan at PainSupport

[Lc]

Hi AVK, I am deaf and get tinnitus, if you go to a website “Action on hearing loss” which I am a member, there is a whole range of equipment and items to help you with this problem, and also see your GP and get referred to you local audiology centre normally placed within the hospital, they can also help. hope this helps. take care and best wishes, Lee

[PaulT_99]

Hi AVK,

No ive never had any tinnitus, and ive not heard of a SCS implantee suffering this as a side effect.

I would say its unrelated.

[Wb]

Hi just had the abbot burst scs implant does anyone know how long it takes for it to kick in with pain relief? Thanks .

[PaulT_99]

Hi WB and welcome to the forum.

Ive never heard of this one before so just checked out their website.
https://www.neuromodulation.abbott/us/en/products/neurostimulators-chronic-pain/prodigy-MRI-SCS-system/ht-tab/overview.html

They dont mention what frequency it runs on. But supposedly you get a tingling / buzzing sensation from what they mention. Which would point to it being an older low frequency system.

With the Nevro HF10 (10Khz) system that most of us use works instantly as soon as its turned on. With the benefit of no sensation.
However, over time, say within the 1st year the effectiveness does wear away a bit as your body adapts to it.

[Wb]

Hi paul thanks for the reply .this is a new system just released last year im told ,there is no tingling or buzzing .my trial worked really well but have been put on a lower setting to increase every 2 weeks just wondered if anyone else has had this stimulator? And also are there any restrictions in jobs you cant do as my job is very physical and involves a lot of heavy lifting .

[Author]

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