According to information from the Trigeminal Neuralgia Association (TNA), there are several procedures which are effective in treating TN. Why is no one on this forum mentioning that? I am 79 and don't want
to spend what remains of my life on drugs.
The problem with TN is that there is no hard fast identifyable cause of it. There are so many places where the nerves can be irritated finding the EXACT location is big question.
It took my lot of 4 different kinds of specialists to determine mine was because of a very slow growing tumor on the left PARATIOD GLAND. That was removed and with it went the need for the stronger medications. I still have some issues but much reduced pain wise.
Just be very careful that any 'suggestions' you see or hear of are verified by YOUR MEDICAL TEAM before any type of surgery.
Good luck from a junior member (74)
Baudy!
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!
Hi,my friend has tn on one side of her face,docs blame it on dental work. She had to increase her meds to highest dosage for pain. The meds ruined her quality of life as she couldnt function normally. She just had gamma knife done. We have our fingers crossed for good results. Hope you find your snswer. Xx
Greetings,
There are several procedures that may be effective for some.
They are not all good for all people and they don't all last forever.
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.
Ive read gamma knife can be quite successful,id still check into it. THere are videos on YouTube showing procedure
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!
I do too,she took manageable doses for many years with no problems, hopeing that for you also.
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!
Hi Celia,
People do mention surgical procedures, I do as I had Gamma Knife Surgery in July and have sent letters to the discussion form. It made the TN worse for about 6 weeks then I had NO pain at all for a few weeks and then it came back, however, it is far more manageable. I have taken no drugs for 5 weeks. Some days it is difficult to drink, talk, eat and clean teeth but not as much electric, I can cope with the pain and carry on with life. I was offered both Gamma Knife or an injection through the cheek. If the Gamma Knife did not work I could the have the injection. Both procedures would only last about 3 years but the TN should be easier to manage after!! I also have progressive MS which is why I have TN and that is why any procedures don't last that long. I have tried so many different drugs not only do they all make me feel so ill but they also work against the MS. I am 67 and have had TN for at least 10 years. I live in the S West and had Gamma Knife in Bristol, it is not being done there any more, I was told London was the next nearest place. Good Luck I will look forward to hearing how you get on. I would recomend it.
Sally
Hey Up Celia
I'm a member of the TNA too and yes they do suggest quite a long list of procedures that have been used for control of TN. The easiest one to take care of (even if it is to discount it) is to have a high quality MRI which will reveal (or not) whether you have an artery compressing the root of your Trigeminal nerve. If you do, then the future is clear and your neurosurgeon will be quite confident in the diagnosis and suggested treatment (MVD). If not, he/she will be clear about the next route to follow.
Has your neurosurgeon or the team suggested this, or carried this out for you? It's best to get the real clinically accurate diagnosis before wading into the unknown of surgical and other interventions. You might have been down this route already - in which case I apologise for clogging up your inbox!!
Cheers
Big D
Thank you, army. I had an MRI scan when I was first diagnosed and nothing abnormal was found. The diagnosis is 'classic' TN. Since then, no further investigation has been done and none suggested. All I'm being offered is increasing medication, but it doesn't help at all so my life is on hold unless I can persuade someone to operate. All messages are welcome - and my Inbox is hardly groaning under the weight of replies!
The high resolution MRI scan is a Fiesta scan. Yes, if it shows a blood vessel on the nerve then they can perform a surgery called MVD. This is the mos invasive procedure, but it is a solution! Good luck!
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