As a result of demyelination from MS, I have Trigeminal Neuralgia. I’m exploring Gamma Knife treatment as I think it’s the best surgical intervention for this presentation of TN. Could anyone tell me their experiences of surgery for MS-related TN and if Gamma Knife is the best or only surgery in my case?
I’ve been on carbamazepine for seven years and am on 1600mg at the moment (up from 800mg after severe attacks) from which the side-effects are hard to live with. I’m anxious that medication is becoming ineffective.
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That sounds horrible for you and I am sorry that you have been suffering for so long. I haven’t had TN - it’s one of the things I dread - but was briefly on carbamazepine for nerve pain arising from an MS relapse elsewhere and even a small dose of it knocked me sideways. The dose you’re on would stun a lumberjack, and I can only imagine what living with that must be like. I really hope the if you do go ahead with surgery that it brings you relief from that pain.
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Hi Alison, I really hope you don’t develop TN. Thankfully, it is rare (relatively) and rarer with MS. The drugs do work, but they leave you senseless for great chunks of the day,
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I’ll bet they do. I was on a low dose and felt like I’d been sandbagged.
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If you do have it done please update of the results as I’ve been suffering with this since diagnosis and yet to find anything that can help and ease the pain and torment. I hope it’s successful and at last eases your pain without all the side effects. I’ve tried carbamazepine which did ease things a little but caused urine retention.
I’ve just been to see Mr Neil Kitchen (private consultation) at UCLH. We talked through all my thoughts about my experience of TN as an MS patient and he agreed that that I was a suitable case for Gamma Knife. He is able to refer me to himself as an NHS patient. This is exactly what happened for my original MS diagnosis - private consultation and referral to the same for future NHS consultations. I’ll let you all know how this progresses!
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I really hope you soon get some relief from this hideous pain, as know how much it can wear you down. 
you’ll soon be pain free, which I’m sure will make such a difference to you.
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Sorry to hear you’re dealing with that — TN with MS is really tough.
Gamma Knife is often offered because it’s less invasive, but results can be variable in MS-related TN and it may not be as long-lasting as in classical TN.
Other options like radiofrequency or balloon compression are also sometimes used, but the best choice really depends on your individual case, so a specialist TN/skull base team is definitely worth discussing it with.