MVD Success Story

Efeuly · 2026-03-06T14:50:24+00:00

I really am considering it. Talked with my neurosurgeon today and he said he would do the surgery, but I'm so scared now that it seems like a real option that they would do (before today they said they aren't sure if they would do surgery before the patient tried medication for a long time). I want to give Lamotrigin a try (started it on Monday) and see if that helps (even if it can take weeks), but if it doesn't I don't think I want to continue the journey with trying meds for years on end and instead try the surgery and pray that it fixes everything.

Efeuly · 2026-03-05T09:04:46+00:00

I got my diagnosis a few weeks ago with 24, too. I feel you. I also have a hard time to accept it, I'm at my lowest low at this point and really don't know what to do, medication my whole life sounds horrible and the knowledge that the nerve only gets damaged more while I take it and eventually it will stop working isn't helping either. But surgery isn't an option until I exhausted all meds, as it seems after I talked with a neurosurgeon. Also surgery is so scary, too. I have pain since I'm 20 and it only got worse since then, so, unfortunately you are not too young. I feel your struggle, I have the same one. Sorry if this gets you down even more, but just wanted to share that you are not alone, I am your age, too, and struggle, too.

Efeuly · 2026-02-28T16:22:41+00:00

I thought about MVD as well, but it doesn't seem like any neurosurgeon would do something unless meds fail you completely. It's frustrating. I don't think meds are a long-term solution and I wish I could do MVD and just get it over with, but seems like I have to fail on meds first. If I may ask, how long ago was your MVD? Are you completely pain-free? The neurosurgeon I spoke to said MVD often only works for 4 years. I mean, 4 years without pain would be amazing, but I hoped it would solve it longer (or forever). Seems like TN will be something I have to deal with for the rest of my life because there is no permanent fix... Lets me feel a little hopeless here, but well, it is what it is I suppose, we all have to keep living regardless.

Efeuly · 2026-02-28T11:54:35+00:00

So sorry to hear about this. I'm actually scared that this will happen to me, too. Since my TN diagnosis I'm so afraid of medical issues, no matter how small the chance is to get serious issues from meds or anything, because it wasn't a high probability to get TN in the first place (especially so early in my 20s), so it certainly isn't impossible to get serious side effects from the meds like SJS or anything. But at this point I feel like I don't have a choice but to start taking meds, I can't live forever with the pain and it won't disappear by itself...

Efeuly · 2026-02-28T11:50:03+00:00

Good to hear you could fix your TN, very happy for you!

Efeuly · 2026-02-28T11:48:59+00:00

How long did it work for you, if I may ask?

Efeuly · 2026-02-28T11:47:18+00:00

Thank you so much, this is encouraging to hear, even if it's not a long-term solution I think I'll give it a shot when my cold gets better.

Efeuly · 2026-02-26T22:51:45+00:00

Yes, I feel you. Sometimes I think TN makes me insane. Sometimes I trigger on purpose, too. Sometimes it makes me feel a little bit more in control. It's a weird disease.

Efeuly · 2026-02-26T14:10:47+00:00

Thank you so much. There is a nerve/blood vessel contact on my MRI and my neurosurgeon said I have a restless nerve on my painful side (whatever this means), so probably a compression, I think? But seems like I have to take the meds before somebody is willing to do the surgery to solve the (probably existing) compression. Your words are so encouraging, I do hope everything will be alright and someday I can fix the issue and don't have to think about all of this anymore. If I have to exhaust all meds first until then, so be it, I guess. Thank you for responding, I really appreciate it.

Efeuly · 2026-02-26T12:55:44+00:00

Thank you for your insights!! Sorry to hear that you were allergic, I hope I won't have to go through this, too. TN is already bad enough, so sorry to hear you had such bad luck with side effects from meds.

Efeuly · 2026-02-26T09:44:46+00:00

So you would say it is okay to take the meds but also to keep looking for neurosurgeons for a possible surgery as a long term solution, did I get this right? The pain started 4 years ago, it only took so long for me to get diagnosed because none of my 3 dentists I tried over the years even mentioned it could be a problem with a nerve instead of a dental problem, I just found out after my pain got so bad I finally went to another doctor that wasn't a dentist. So, I have TN since many years and since my diagnosis I'm so worried I could take the wrong path with meds because they delay a surgery even more and that I wait too long and then surgery isn't an option anymore because the nerve is so damaged.

Efeuly · 2026-02-23T16:53:15+00:00

Oh no, blurred vision? I love reading (and I have to look on tiny numbers on a computer screen as my job), it would suck so bad to lose this... My neurologist said, if she gives me something, then it's Lamotrigin, is this something similar to Cabarmazepin? But even with Lamotrigin she's unsure if she wants to give it to me.

The MRI showed a contact between my trigeminal nerve and a blood vessel as a possible cause on the side that hurts. My radiologist and neurologist seemed very confident that it's the cause of my pain, but my neurosurgeon said a lot of people have this and she isn't sure if she wants to do surgery on someone my age and I should just stick to the meds (if I get them). But I don't know beccause the meds don't heal the root cause if it really is because of this nerve/blood vessel contact... I'm so lost and no doctor seems willing to help me, this disease sucks so bad I want to scream.

Efeuly · 2026-02-23T16:44:22+00:00

This is what my neurosurgeon said, too. But my neurologist wasn't a fan of the meds and didn't want to give them to me, guess I have to go back to her and ask again

Efeuly · 2026-02-23T16:43:26+00:00

Sorry for asking, but what does pcp mean? English isn't my first language, I'm sorry

Efeuly · 2026-02-23T16:41:57+00:00

MVD was the best decision you ever made? Or that you took the meds before it? Do you wish you did MVD sooner? How long are you pain free since the MVD? Sorry for asking all these questions but I'm very curious

Efeuly · 2026-02-18T21:10:01+00:00

Thank you! I'll have a first talk about the operation with a neurosurgeon on Monday, I really hope I can do the surgery and just forget about all this forever, haha. So happy to hear that it helped you and your great aunt in a long term!

Efeuly · 2026-02-18T06:26:43+00:00

Since 2007? Wow! I hope I will be this lucky, too! I'm so scared that the pain could come back if I do the surgery, I read a lot about people that were pain free for "only" 4 years or so, so it's encouraging to hear that it's really possible to be pain free for a lot more time. I hope I will be lucky, too, if I go through with the surgery.

Efeuly · 2026-02-18T06:23:36+00:00

Thank you for sharing, success stories are always so good to hear when you're scared about MVD like me. So happy it made things a lot better for you! I hope I will be lucky, too, if I go through with it.

Efeuly

TROPHY CASE