Hi Sarah,
Another Brit - lovely, but for the wrong reasons. However, this shows the Post Code Lottery of services available from our NHS Trusts across the Country.
An MRI in 2007 showed a knot of arteries tied round my Trigeminal Nerve before the branching, and there was mooted talk with my Neuro of having a sleeve fitted. This came to a crashing halt when I went crashing to the floor at home with a major heart attack.
Now I have a Damaged Heart Wall, Coronary Ischaemia and Microvascular Disease. This makes me a high risk on the table and no Anaesthetist will touch me short of an emergency. This was borne out last year when I became Brady Hypotensive during a simple angiogram and chemically induced heart stress tests.
Have you had a look at the Stickys at the top of the page? Especially the ones discussing muultiple ops and possible CSF leaks. I am not trying to scare you, or put you off, but these are questions I would not think to ask.
With regard to drugs, as you are over here: I also have severe Neurological Hypersensitivity (full body), spinal injuries and Allodynia. My Pain Management Consultant (a working Anaesthetist) has me on Lidocaine Infusions, Oral Ketamine, Oral Morphine and Tramadol. This may seem a lot, but even the touch of my clothes hurts… Anyway, the Lidocaine and Ketamine dulls down ALL Neurological pain. Opiates increase the effectiveness of Ketamine. Since having both, the Parathesia I suffer all the time is 50% less intense, and the attacks are less severe.
Side effects: Lidocaine Infusions, too fast can cause heart problems. Extreme tiredness for 24-36 hours after infusion.
Ketamine, tiredness, misuse can cause bladder problems, anti-depressive qualities(plus).
Keep us updated on your condition, and what you decide. Ask lots of questions - take a print out like I do.
Wishing you luck and loads of pain free days.

Dave.

Sorry, as an aside. One Gabapentin made it feel as though my head had split open and my eyes swelled up and bulged out of my head. I ended up in AandE. No more drugs of that family for me.
My TN, as with the Cluster Headaches I suffer from, is Chronic. I get no respite, no breaks, and the Parasthesia all over the left side of my head and face is 24/7.

Dave.

Dave, what you are going through is immense. Even more reason to thank you for your response. You must be in so much pain all the time, or if not in pain then at the mercy of the side effects of the drugs. I too get the cluster headaches with my neuralgia but only at certain times of the year - the changing of the seasons. Thanks for sharing your experience, and for your advice. I shall update with my decision once I have met with the surgeon next week.

Hello Sarah,

That's a very hard question to answer as TN effects everyone in a different way. I am in the US and I know over here they will not do an MVD if there is some relief thru medications. I also had TN and I did not respond to any of the 3 medications prescribed. Gabapentin I could not tolerate. Both Trileptal and Carbamazepine did not work. I went thru 12 months of switching meds, ramping up doses and then ramping down etc to start another one. It was pure hell. Finally my Neurologist referred me to a Neurosurgeon and they scheduled an MVD. By that time I was not able to eat solid food without having a severe "episode". In my case, the MVD surgery literally gave me my life back. That was 5 years ago and so far so good. The recovery from the MVD was trying for a couple of weeks but well worth it in my case. I too had multiple blood vessels "tangled" with the nerve.

I think if I could have controlled my TN with low doses of a medication, then I probably would have waited to have surgery but I would not have lived the rest of my life as a zombie which I was at maximum dosages of the medications.

Ken