My husband was dx’d with TN three years back. One course of tegretol was enough to put him in remission. He tapered of the tegretol, and was symptom free for two years.
Then it came back with a vengeance last August/September.
The problem is that the ONLY med that alleviates his symptoms is tegretol. But the side effects are completely life-altering for him. By time he gets to a dose that alleviates the symptoms, he can barely function. He has tried several other meds, and nothing works.
He has been unable to work (he is a elementary school teacher) neither with his symptoms, nor with the side effects from the tegretol.
His neurologist referred him to a neurosurgeon, which he consulted with today. He is going to perform another MRI/MRA in a couple weeks because its been three years since the last one, and the first MRI didn’t show a vessel compressing the nerve.
I guess my question is this (and I have no idea why I didn’t think to ask the surgeon this):
Will trigeminal neuralgia always show a vessel compression? Will they do the surgery even if a vessel doesn’t show up on the MRI?
Any info/advice is helpful.
We are not sure about the surgery as of yet, anyway, but he is getting frustrated to the point of desperation with the endless cycle of pain/side effects.
To answer your questions quite often there will be no compression evident when the MRI is done. Its not unusual at all for it not to show. Also a neurosurgeon will reccomend, and do the surgery without proof from an MRI if they feel that is the best option. In my case I never even had an MRI done, that was 30 yrs ago though. My neurosurgeon went strictly on my symptomns and was 100% right finding 2 veins surrounding the nerve and an artery pulsating on the same nerve .It is also very common for the tegretol to lose its effectiveness after awhile and the side affects really are difficult to deal with as they keep increasing the dosage. Good luck and hoping for some quick answers and a solution for you. There are a number of options beyond the meds
Thank you! Is it possible that they would go in via surgery and NOT find any compression? Just starting weigh all the pros and cons.
It is possible that they find no compressions when they do the surgery. This is a big fear of mine as I head towards my MVD next week. My life now is a shadow of what it was preTn. Having the MVD seems like a final grasp at being pain free. Not sure what I will do if the surgery is not successful.nall that being said my neurosurgeon is confident he can help me. There are relatively few risks when balanced with the success rates. Make the best choice or you. All the best.
My MRI/MRA were both normal. My surgery revealed 4 compressions involving multiple nerves. I also was so afraid to have a MVD without physical evidence of a compression, but I am sooo thankful I did. I guess I knew that something had to be causing these horrible symptoms and I was confident my surgeon would find the cause.
Good Luck to both of you, CJ and Patty!!
Hi. I’m sorry to hear of your husbands situation. I understand. For many of us the dose of meds that keeps the pain away can be just as debilitating as the pain itself, with all the side effects.
In my situation my TN came out of remission with a vengeance too…it became resistant to any and all meds. I’ve had bilateral TN for 11 yrs however I was very fortunate to have lengthy remissions on both sides. 8 yrs right side and 10 yrs left side.
No compressions were ever seen on any MRIs throughout the years.
My neurosurgeon decided to perform an mvd because my pain was progressing and no meds were touching it. We both knew there was a chance no compressions would be found, but I had nothing to lose by trying. Yes it is an invasive surgery, but if it is performed by a highly qualified NS the risks are minimal. MVD is not damaging to the nerve if done correctly.
In my case 3 compressions were found.
I woke up TN pain free.
It is a personal decision, one that cannot be made lightly. It is not a cure, although many have benefitted from years and years of relief others only get weeks or months.
Why? We don’t know. Until a true cause can be found for TN we’ll never know…
I wish you and your husband all the best as you go forward.
(((( hugs )))) Mimi
PS. Read through the MVD group as well as the failed procedures group to understand a little more about successful and unsuccessful procedures.
It wouldn’t let me edit to add…
I still have TN on my right managed by tegretol, and my left side is no longer med resistant, I was able to wean off 2/3 meds but can’t seem to lower my dose past 1200mg. I didn’t want to mislead you that I am tn-free. I am pain free.
Its is possible that they wouldnt find a compression but very unlikely. A surgeon wouldnt due surgery unless symptoms are the very typical TN symptoms. The MVD surgery has a good success rate but there are some potential side affects . Your surgeon should lay out all the odds to you but the odds are clearly in his favor. Good luck
I've just finished my third attack of TN over the past 28 years. I had gamma knife successfully in 2003 and was going to do it again this time but had trouble with insurance.
Tegretol worked for me the first attack but I hated the side effects, too. I was a zombie. This time it didn't work & a neighbor with TN suggested Lyrica. It worked in a relatively low dosage for about a year. I don't think it's a commonly prescribed drug for TN.
The neurologist I saw down here in FL was the first to suggest that it might not always be caused by a compression. Based on the widely differing cures and my own experience with diet, I agree. I think it can be a general inflammation of the nervous system. I just learned I have diabetes and I'm beginning to think that may have caused nerve damage.
i went on an anti-infammatory diet and have been pain-free without meds for 2 months. I highly recommend trying it. It costs nothing but it's a big effort to change eating & cooking habits. Most important, it's not destructive like surgery & it's healthy.