I started my journey like many, with dental work. After a while, I was diagnosed with TN and placed on anti-seizures. I tried about 6 meds and combos of each for about a year, but my crashes into pain got worse and worse. I finally went to the mayo clinic to find a solution. I was scheduled for MVD, but they were concerned that I was only 30 and there wasn’t obvious compression in my MRI. I also had a dental X-ray, which those results ended up causing my surgery to be canceled. They had my go to a local endodontist to fix an infection sitting on the nerve. I was so excited that I had answers and they were so much better than brain surgery! But…my pain got worse and his treatment was going to take 4-9 months. So I ha the tooth extracted. I had immediate relief, but I’m in week 4 and the pain is back. It was supposed to heal in 6-8 weeks. To add to it all, the endodontist was 100% sure my pain was from the infection an the oral surgeon felt like it was a neurological problem. I don’t know what to do!!! I scheduled an appt for acupuncture, but don’t know if I should expect any relief.
Does anyone have other ideas for me? I don’t feel like I’ve waited long enough to go bak to Mayo, but I’m not sure. I feel like if I go, he will just slice the nerve instead of do the MVD. That’s where the surgeon was leaning when we went. There is something causing this. Why can’t anyone figure it out?
If you get an MVD for type I in the first 7 years it is most successful
I flew from MO to Michigan to have Dr. Ken Casey do my MVD - he learned under the inventor of MVD.... he does initial consult by email, a few questions, a pain scale questionaire - then he booked me for two months later - I met him day before and drove home, consulted by email for post op and local neurolologist
I would do it all again
they have a place you can come and rent a cheapo but nice apartment for the night before hospital and night after hospital.
He does not do MRI for compression - only goes on patient story/data
I can't guarantee anything, but I tried taking vitamin B 12 tablets along with doing this excersise>>stand next to a wall and reach for the ceiling hold your breath, do this three times a day. T he pain went away for about three weeks then came back.,so I stopped everything. I started taking the B12 again and the pain went away,and i"m still taking the vitamin and no excersises, Now it's been about three weeks. So far so good
I would PM Red and tell him what what has gone on. He might be able to give some suggestions on what to do next. Is it also possible you still have some infection? I wish I could give some better advise, but I’m not sure what to do next. I do hope you get the relief you deserve very soon. Take care and hope you have a pain free day.
The reason for the nerve slice is if during the MVD he doesn’t find any impressive compression, he wants permission to slice the nerve instead of completing the MVD. He didn’t really expect to find compression.
The OS seemed like he couldn’t tell how the infection was doing for about 6 months, because the bone will have to grow back in before it will show differently in an X-ray. The pain is from my bottom “fang” tooth on the right side to the back of my jawline. It has been mostly in that front tooth area lately though. I also feel pain at times like a pull of the skin connecting my tongue to my jawline. The tooth I had extracted was the back tooth on the bottom right. That’s where all my pain started 18 months ago. It has moved up and down the nerve since it started.
If it was me, I'd take a wait-and-see approach because you're in a gray area.
Do you really want to rush into a fairly major surgery with an iffy diagnosis?
If you don't have surgery right away but do continue to have TN pain, you've had to suffer for a while.
If you do have surgery and your TN pain was actually nerve pain caused by an active bone infection, you could be risking all of the nasty complications that can accompany MVD surgery for no good reason.
I understand your frustration, I've had TN since I was about your age (I'm 40 now) and I still haven't learned why I have it. I'm bilateral and there has never been any evidence of compression on any of my MRI/MRAs (although I do have lesions, none seem to be anywhere near the trigeminal nerve). Sometimes it's just idiopathic.
All of this discussion of an infection of the trigeminal nerve is quite interesting to me.I have had TN for about two years now. I'm sixty three years old now. My neurologist has me on tegretol, neuron ton ,and baclafin. I think they have all helped me, but ware off over time. I have asked my neurologist about the nerve going to my front teeth as that is where the pain seems to end up,but he says its TN. Right now the pain seems to have subsided, so i'm going to blame it on the B 12 tablets. Take care.
How do you get ahold of Dr. Casey? I am in serious pain and I am only 23. I know I need MVD but everyone’s telling me not to rush. I don’t want to be on meds my entire life … I am terrified and I want the pain to stop. I live in Ohio… it’s a long drive to Michigan but I would do it if I had to.
If you are thinking MVD, make sure you do plenty of research, they don’t always work & can have serious side effects, it is possible to end up with other permanent problems on top of the ones you have now.
Do the research on all the options consider all the risks & make an informed decision.
I personally think there is a relationship to neck & posture, but do not have enough evidence to prove it.
Hi…email me directly at kcdancerkc at yahoo. Was the best decision of my life to go to the top doctor in the country before he retires! Still in business I assume. Email me direct.
At this point, I would wait the few months to see if the pain subsides. From what I’ve learned in the last four years from having ATN is the pain is going to be there if it’s really some sort of trigeminal pain. If you’re lucky in a few months and your pain settles back down then praise God!!! In the meantime I would plead with my doctor or ask for a referral to a pain clinic for some sort of opiate pain meds. If the pain goes away great and the can slowly take you down from any kind of addiction you may have from the pain meds. During that time I would do with the folks here with suggested and research. Research doctors research procedures get all the information you can to make a fully informed decision. Right now you’re bouncing like the rest of us were and just wanting the pain to be gone regardless of what we have to do. I think most of us are still there we’ve just learned that it’s not that easy. Then if you need to have that MVD The doctor suggested then go for it. Perhaps you’ll find an even more experienced doctor that can help you better. Take the time to talk to the very experienced folks here, and then when you’re ready make the decision and do what you need to to get out of pain. Then I please let us know how it works.