Surgical intervention for TN

Thank you, Baudy! My problem is diagnosed as 'classic' TN, but I do take your point about the difficulty of identifying the exact location of the affected nerve. My medical advisers are clearly not keen on any intervention except medication, no doubt for good reasons. Unfortunately, I was initially prescribed a much lower dose of Lamotrigine than I should have been on so didn't get the relief I might otherwise have done. Medication has now been increased and I'm not suffering as much as before. Even so, this condition is hell!

I have had two Gamma Knife procedures, but the effects are not immediate. For TN sufferers that is a HUGE negative. I found minimal relief after 6 months. I then saw another neurosurgeon for a stereotactic rhyzotomy. Because I have MS, I had a history of lesions in this area and this seems to be the problem. He asked me to have a Fiesta scan MRI and from that he ruled out vascular compression on the nerve...MVD was not the answer. The rhyzotomy yielded immediate relief which lasted 6 months. Now I'm having breakthrough pain which I attribute to the fact that he was very conservative about how much he burned the nerve to avoid bothersome facial numbness. He felt that it was better to be conservative and that I could repeat the procedure if necessary.  That is where I'm at now, but for a multitude of reasons now I need to pursue medication options instead. 

Hi Celia

Finding the RIGHT area to treat is really the 'elephant' in the room. Imagine how you would feel after surgery that failed!?

Medication depends on what your body will tolerate. I was on 200Mg Lyrica (Gabapentin) three times a day and 600Mg of oxcarbazine 4 times a day. Best described and 'Zombie Immitation' but it made the pain bearable.

I now use Paracetemol and Oral Morphine in small doses to handle what pain is left. It took Neurologists, ENT Specialists, Oncologists and many radiographers to interpret the countless MRI's, CT Scans, Ultra Sounds, and a PET scan with radioactive contrast dye to decide my fate.

Keep at it and never stop looking is all I can contribute. I wish it was more.

Good Luck

Baudy!

Thank you,Caroline. Your experience makes me even more doubtful about going for Gamma Knife procedure, especially when the beneficial effect, if any, takes so long to be felt. When I first learnt about it I got the idea that it was the answer to TN pain. Now I'm less convinced and am trying the medication route, but that also takes time to work - if it does. When the pain is at its worst, you don't care if your face is frozen as long as the pain stops! But judging by what others say about that it could be almost as bad as the condition its supposed to treat. Thank you, again, for sharing your story. I wish you the very best outcome of your medication option.

Hi, Baudy,Thanks for details about medication.The 'zombie'effect is what I dread most! Being able to function and carry on my usual activities seems important, even though the temptation is to give up! At present I'm prescibed increasing doses of Lamatrigine,until a level is reached which controls the pain. Meanwhile, I'm carrying on as well as I can.

Hi Baudy,

You seem to know more than most. I'm 79 and taking 600mg Tegretol per day which keeps the pain very manageable. I've booked in for balloon therapy but wonder if I should just continue with the Tegretol. I also take Xaralto pain thinners for adfib ans blood pressure tablets.

Your reply would be appreciated.

Cheers,

Geoff

Hi Geoff

I would never offer advice regarding medication for anyone. Your GP is the one who knows You and your conditions and is best placed to recommend the best solution for you.

Tegretol worked for me for a while. You are best placed to judge what changes you should make. I would ask your medicos before making any changes in dosage and frequency.

In my case none of the popular surgical interventions would have worked so were I in your situation I would want to be suitably convinced the suggested procedure is the correct one. The nerves go through so many places they can have issues anywhere.

Mine was in the PAROTID gland on the side of the face behind MECKELS CAVE and hence very difficult to find.

Sorry I don't have the answers you are looking for and I wish You well on your search for a solution.

Baudy

Thanks for your reply. I finally had the balloon operation after cancelling twice. My neurologist must be fed up with me. Anyway had it done ten days ago and at least the trigeminal pain has gone but most of right side of face is numb, have a constant sore throat, swollen lips, an ear ache, and can only eat soft food because of chewing difficulties.

Regards,

Geoff  

Hi, Lee. I do hope your friend has a successful outcome from Gamma Knife procedure. One of the worst aspects of TN is that the high doses of drugs needed to control the pain can affect quality of life in the way you describe. I'm fervently hoping I get relief before I get to that stage.

Thanks, Susan. This forum is making me realise that surgical procedures are much more problematic than I imagined. I had the idea that relief was instantaneous and that I'd be pain-free immediately. Not so, it seems!

My rhyzotomy was effective immediately, the important thing is finding the right doc. Research neurosurgeons in your area. Then discuss your options with him/her. I walked away from a top-rated one because I didn't like his 'bedside manner'. The NS I ended up with was also tops in his field, but I liked him better and much preferred the hospital he is affiliated with. Good luck!