u/BiteNotRight

Hi friends. Hope all of you are doing well, subjective as that sentiment may be.

I just received the date for my right side MVD surgery. It's going to be at the end of September. Gives me some time to do the pre-ops, take a trip to see family, etc.

I have bilateral pain that is both TN1 and TN2. The TN2 is more present, partly because I always feel it. The typical TN, the pops of pain, happen on both sides. I made the decision last week to do the right side first because it had been much more painful recently. Of course, a day later the left side was like "Oh, what now?" So both sides are battling it out, but I'm sticking with right.

I had an MRI that showed compression on both sides. The report said left side had more, but a neurologist said right side looked more. The neurosurgeon, thankfully a very well-respected surgeon for TN who is in SoCal, said basically it's hard to tell until he's in there. But, good that both sides showed something.

I've been told it's a 50% chance of 50% pain reduction. To start with the latter, 50% reduction in my pain would be a life changer. I tear up just thinking about that. 30% would be great!

As for 50% chance of success, if there was a slot machine with those odds I would never stop playing it. As the neuro said to me (seeing me during an excruciating flare), "You have to take those odds."

Any stories of success, especially for TN2, would be greatly appreciated. Some have shared before when I was looking into surgery, and they meant the world to me. Any advice is also appreciated.

We live about 2 hours from the hospital, so we plan to stay close for a while. In fact, the doctor requires it.

This community is more beautiful than I could ever have imagined or could now ever express. Prayers to all of you for joy and a life that is much more about love than about this awful disease.

Thanks

Hi friends. I'll try to keep this short (we all know how tough that is!)

I've had TN pain for 6 years, mostly TN2 that affect my teeth. Started right side, but in the last year is on the left as well. In the past year, I've had two teeth removed because oral surgeon said there "might" be something. Neither helped. Now, the one next to the tooth most recently removed is hurting, along with other teeth. X-Rays and CT scans don't show other dental issues.

I've been on carbamazepine and Lyrica, and just had my carb increased from 800 to 1000 because the pain is getting worse.

This past April, I had a Fiesta MRI that showed compression on both sides. I saw a very well respected TN neurosurgeon (I live in SoCal) who said MVD is definitely on the table, but he wanted me to be seen by MS neurologists because of other symptoms. I saw them yesterday after having another MRI. They said they can't rule out MS, but it doesn't seem to be affecting the trigeminal nerve anyway. They said that nerve doesn't show any lesions. But they confirmed that they see compression. And they suggest MVD surgery. They are part of the same medical group as the neurosurgeon.

I see neurosurgeon in a week. I'm guessing he'll say do the surgery (though I've guessed wrong before). I'm just nervous because he has said, as I know others say, that MVD isn't as successful for TN type 2. I have some elements of typical - some shooting pains, especially in the teeth. Like the nerves in them "explode". But the worst pain is the constant pressure and ache. Even the "phantom teeth" that were extracted hurt. The last week has been the worst yet, with pain so bad it leaves me in tears.

Anyway, wanted to throw all this out there for anyone who might have had similar experience and had the surgery?

Only we - those who have this disease and those who are loved ones of people suffering TN - know the despair it can cause. I'm fighting through that know, thanks to my wife and my faith. I'm clinging to both as much as I can.

Thank you so much in advance for any answers. Love and healing to all of you.

Hi everyone. I am so grateful for this wonderful community. As I have tried to find my way through this disease, there are so many times many of you have kept me going. Thank you for that.

I have an appointment tomorrow with a neurosurgeon. Someone who is mentioned here quite a bit and is in California. I got the appointment after I had a fiesta MRI that showed compression on both sides, more on the left. I mostly have TN2. I've had this for about 5 years but it's been really bad after dental work more than a year ago.

For those of you who have met with neurosurgeons after something showing up on your MRI, I wanted to see if there are specific questions I should ask. Or if the doctor gave you options, how you went about discussing them? If there's anything specific I should think about going into the appointment?

Thank you so very much!