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Deep Brain Stimulation. One possible solution.

Nige

One possible solution for cpsp is brain surgery. The evidence for DBS is variable. After the operation, the success rate varies from 0 - 100%.
Details from a German hospital in the link. The only UK hospital currently looking at the procedure is a research project under professor green at Oxford hospital.
https://neurochirurgie.insel.ch/en/erkrankungen-spezialgebiete/spezielle-techniken/deep-brain-stimulation-dbs

Nige

Deep brain stimulation appears to
be more effective for nociceptive and peripheral
neuropathic pain than for central neuropathic
pain.
The efﬁcacy of DBS may also
vary depending on central pain type. For
CPSP, DBS may be effective in 50% to 70%
of patients, although an important proportion of
patients (up to one-third) do not experience sus-
tained beneﬁt with the permanent implant.

Nige

This is a discussion between surgeons.
It isn’t the simplest to follow but it explains the reasons for two electrodes being implanted. The connections to the brain produce different masking sensations. One is paresthesia, a tingling sensation and the other is a feeling of wellbeing.

One slight weakness mentioned is that unlike the solution for Parkinson’s, DBS for cpsp needed multiple reprogramming.

Nige

In the video above, the surgeon from Belgium indicates they would try non invasive TMS before invasive DBS surgery.
Unfortunately, unless you can easily get to Liverpool, this isn’t an option in the UK.

Ruthy

Hi @Nige what’s the current situation with your DBS? I don’t recall seeing anything from you about it recently 🤔

Nige

Ruthy Hi, Ididn’t have too much to say but I got an update last week saying they are aiming for this summer. I have passed 2 of the 3 pre op tests. Just the fitness for surgery one to go, once I have that date, suspect the surgery won’t be too long at all after.
I have been watching a lot of the Parkinson DBS videos. The one I saw last night was a US surgeon and he mentioned Dr Green in Oxford as a leader in DBS, was nice to hear.
I am quite intrigued by Jonathan’s post about lidocaine. I wish someone had mentioned that 15 months ago before this pain really ramped up. That might be my plan B if this doesn’t work or provide enough benefit.

https://www.guysandstthomas.nhs.uk/health-information/lidocaine-iv-infusion-treat-pain
Are you tempted ? If it’s offered near you ? It seems to be one of those things that I look at the web pages and think, wait, what, why hasn’t this been flagged. Yeh you need repeat doses, some side effects and there is a risk of bad things but even so…

Cheers
Nige

Ruthy

I don’t think I’m tempted by DBS just yet, I don’t think my pain is at your level.
I’m still intrigued by TMS if I can find anyone who either does it nearby or will refer me. But I’ve never heard of Linfocaine before and I’m definitely tempted by it, so will do a bit more reading around.
I’m guessing Dr Green is your surgeon? That is very reassuring to hear them mentioned by others 👍🤞

Ruthy

Lidocaine 🙄

Nige

Ruthy
No nor me Ruth. It’s probably down to this on the Guys and St Thomas site. It looks like it won’t be publicised for pain.
“Lidocaine is not officially approved (licensed) to be used in this way, but it is widely used, and known to reduce pain for some patients.”

I presume Johnathan either must have visited the shoe shine man in police squad to find out about it or must have slipped his consultant a £5 for his best solution and not the usual, there’s no cure, abandon all hope ye who enter here.

Whatever not officially approved means, it doesn’t stop the NHS from using it. Slightly odd ?

From the same NHS site
Lidocaine is prescribed for some people who have:

widespread, long-term (chronic) pain
persistent (refractory neuropathic) pain
short and painful (cluster) headaches

Nige

Although this is for Parkinsons, this shows a similar DBS operation in some detail. I have not seen this to this level of detail before and as it’s for the NHS, so much the better.
If you don’t like blood or surgery, don’t watch.

Nige

https://www.academia.edu/94607544/Centromedian_Parafascicular_and_Somatosensory_Thalamic_Deep_Brain_Stimulation_for_Treatment_of_Chronic_Neuropathic_Pain_A_Contemporary_Series_of_40_Patients?email_work_card=view-paper

Nige

https://www.neuromodulationjournal.org/article/S1094-7159(22)01268-5/abstract

Article showing pain reduction, crucially longer term

Simon

Dunno if I’ve posted this link before ..
https://www.academia.edu/keypass/VnVHbm56aWh4UnhNRGJKZ2Z3cFBiU2MreHJRRGMxZXFwMC96WTd3SnFLbz0tLWRtaDlrMnZsWGlNSmFPbWRjclllamc9PQ==--77c2e30f178773f550899728340f6591324b67fb/t/fFiGR-SPKsZ5C-Ruusw/resource/work/53683910/_p_Effects_of_Non_Invasive_Brain_Stimulation_on_Clinical_Pain_Intensity_and_Experimental_Pain_Sensitivity_Among_Individuals_with_Central_Post_Stroke_Pain_A_Systematic_Review_p_?email_work_card=view-paper

Ciao
Simon

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