[sarah2011]

Hi. I have had trigenimal neuralgia for about 5 years. For the first 4 it was bearable, just shock like pains when brushing my teeth or washing my face and only for a few months of year. A year ago the pain became incredibly strong, I could hardly eat, it was agony to move my mouth to read to my children. Even walking set it off. Gabapentin initially worked but after a few months, even at a very strong dose, it was ineffective. At that point I met with a neurosurgeon and we discussed MVD. He also suggested I try carbamazepine in the meantime and it worked wonders. On a pretty low dose I became practically pain free and now I'm not taking any medication.

As you can imagine, this is wonderful. If the pains trigger I take carbamazepine for a couple of days and it seems to be keeping it in check. Or is it? Is it just that for now the pain is in remission and any time it could hit me again like it did this time last year?

Despite feeling much better I decided to go ahead with the MVD surgery and have been on a waiting list. The date for the op has just come through and I'm due to go into hospital in 3 weeks time. Now I'm thinking what on earth am I thinking of. I'm terrified! It seemed to make sense to get it over with and I thought if I could do it as a non-emergency - ie not wait until the next time I'm in terrible pain - then it would be easier for us all. I could prepare the family, the children for it, have a chance to prepare my work for me being absent for a couple of months and time it so that it didn't interfere with big occasions in the year. But am I being daft going ahead with major surgery when I don't actually need it at this moment? Why am I putting my family through this? Every time I read up about the surgery the scary bits about it scream out at me and I'm petrified that something will go wrong. It's my children I'm most stressed about. It feels so scary.

Shall I just bit the bullet and get it over with now? I'm 47 and in good health otherwise, I have an experienced surgeon. TN can't just suddenly cure itself can it? The pain will come back. Or should I wait until the next bad episode - who knows, I might have another few years pain free.

[EnglishDave]

Hi Sarah,
MVD is offered as an extreme last resort over here because, well, it's invasive surgery. So I popped off and read up some US Hospital and Clinic sites and they ALL say the same. Candidates for MVD are those that do not get relief or control of TN from medication. Your TN is, thankfully, well managed - and I am very happy for you at this time.
However, it is the nature of TN that it does seem to get worse in most sufferers as the years pass, with attacks happening more frequently. Yet this could take years, and your meds might still give relief.
My opinion. If I was healthy and my TN/Parasthesia was controlled by meds and I was offered surgery NOW to control possible future pain, I would decline. I could always revisit my options should circumstances dictate. Alas, I do not have these options anyway.
Whatever you decide I hope you stay pain free with few attacks for as long as possible.

Dave.

[sarah2011]

EnglishDave - thanks so much for replying. I'm in the UK too and had my MRI done at Salford Royal Hospital. It's a really tough decision and I know exactly where you're coming from. For such invasive surgery with horrible potential risks it seems madness to have it when the pain is low and the meds work.

However, I developed a resistance quickly to the first meds (gapapentin) I tried and I've been told that it can also happen that the other meds will be become less effective over time. I've also noticed that when I up the dose of the carbamazepine the side effects increase. They make me feel quite depressed and I don't relish the thought of having to take a higher dose. The attacks have been coming closer together and the last one lasted months with very severe, almost constant pain.

Having spoken to the surgeon's secretary and to the specialist nurse they have both said they the surgeon wouldn't have a problem doing the operation when I'm pain and meds free. The nurse agreed it's a difficult decision but said that I had a chance, while I'm in good health and the timing is good (work, family etc), to get it over with now and move on with my life. She also said though that they would be happy to keep in touch with me and monitor it and I could have it at a later date. I'm meeting with the surgeon next week to discuss it further and hopefully will be able to make a decision one way or the other.

You mention you don't have the option of surgery, what is your situation?

[EnglishDave]

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.

[EnglishDave]

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.

[sarah2011]

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.

[Zatochi]

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