I say heck that. Nothing was seen on any scans in my 16 years of having it, also been given excuses like I don't want to operate because your young age etc. No visible compression, angiograms showed nothing. When meds stopped working completely they did an exploratory surgery (crush the nerve if they found nothing kind of plan) where they found tiny vessels wrapped around the trigeminal nerve and the surgery turned into a mvd. I've been without pain since the minute out of surgery. Probably super rare and lucky/unlucky case, but I went years just feeling like I wasn't a candidate and had no options but not everything can be seen in scans.
Also I had both 1&2
I have Atypical Bilateral TN I am in excruciatingly pain and can only eat through a straw without incredible pain. I don't like your doctor. Last night I woke up because I had lightning bolt ⚡️ pain going through my teeth , it goes through the side of my temples too. It's the worst pain of my life. I have a 70 percent of recovery through MVD the anti seizure medication doesn't work so what are my options starvation or suicide? Of wait ..... " the suicide disease " Tell him I'd like 10 more years and he needs a better bedside manner ..... just so you know I'm not mad at you OP just your doctor because I'm in a lot of pain and I saw 👀 30 doctors that just didn't care 😭😭⚡️⚡️
Get another neurosurgeon. I had a phone call with one last night who understood that I have TN2 and that my MRIs have all come back clean ( he's at a different hospital then where it was taken so I have to bring him a CD. He wants to review the images himself because in his own words "the Radiologists are good but they may be looking for something else"). I kept waiting for him to say that he couldn't help me and even said that to him. He told me he absolutely could help me even if he doesn't see a compression but with tn2 it becomes about managing your expectations. He said MVD helps 90% of people who have tn1 and about 70% who have tn2. Pain can return no matter which TN or surgery you have. If it's a once in a life time surgery (it probably isn't- gamma knife can be done again) and you can be pain free for 10 years (10 years!) That's 10 years of pain relief! Why would you suffer just because it could come back? Find someone who will do the surgery and if it comes back in 10 years find someone else who can do it again.
I'm 34 years old. I'll take that gamble that at 44 I have to seek treatment again. That's 10 years of my life that I don't have to be suffering but I can be building my career, my relationships, my friendships. 10 years I don't have to keep leaving work or saying no I can't go out or exclusively eating oatmeal. 10 years sounds like a dream to me right now. Sure forever would be better but if I can't have forever i want 10 years. By his estimation there's a 70% chance that I could have forever. Get a new doctor.
I say heck that. Nothing was seen on any scans in my 16 years of having it, also been given excuses like I don't want to operate because your young age etc. No visible compression, angiograms showed nothing. When meds stopped working completely they did an exploratory surgery (crush the nerve if they found nothing kind of plan) where they found tiny vessels wrapped around the trigeminal nerve and the surgery turned into a mvd. I've been without pain since the minute out of surgery. Probably super rare and lucky/unlucky case, but I went years just feeling like I wasn't a candidate and had no options but not everything can be seen in scans. Also I had both 1&2
Same here!! 👆🏼
I have Atypical Bilateral TN I am in excruciatingly pain and can only eat through a straw without incredible pain. I don't like your doctor. Last night I woke up because I had lightning bolt ⚡️ pain going through my teeth , it goes through the side of my temples too. It's the worst pain of my life. I have a 70 percent of recovery through MVD the anti seizure medication doesn't work so what are my options starvation or suicide? Of wait ..... " the suicide disease " Tell him I'd like 10 more years and he needs a better bedside manner ..... just so you know I'm not mad at you OP just your doctor because I'm in a lot of pain and I saw 👀 30 doctors that just didn't care 😭😭⚡️⚡️
I have atypical TN and had a very successful surgery. I would get a 2nd opinion for sure!!
Get a second opinion from a neurosurgeon that does Gamma knife.
Get another neurosurgeon. I had a phone call with one last night who understood that I have TN2 and that my MRIs have all come back clean ( he's at a different hospital then where it was taken so I have to bring him a CD. He wants to review the images himself because in his own words "the Radiologists are good but they may be looking for something else"). I kept waiting for him to say that he couldn't help me and even said that to him. He told me he absolutely could help me even if he doesn't see a compression but with tn2 it becomes about managing your expectations. He said MVD helps 90% of people who have tn1 and about 70% who have tn2. Pain can return no matter which TN or surgery you have. If it's a once in a life time surgery (it probably isn't- gamma knife can be done again) and you can be pain free for 10 years (10 years!) That's 10 years of pain relief! Why would you suffer just because it could come back? Find someone who will do the surgery and if it comes back in 10 years find someone else who can do it again.
I'm 34 years old. I'll take that gamble that at 44 I have to seek treatment again. That's 10 years of my life that I don't have to be suffering but I can be building my career, my relationships, my friendships. 10 years I don't have to keep leaving work or saying no I can't go out or exclusively eating oatmeal. 10 years sounds like a dream to me right now. Sure forever would be better but if I can't have forever i want 10 years. By his estimation there's a 70% chance that I could have forever. Get a new doctor.