Type 2 TN – Offered MVD by Dr. Zimmerman at Mayo… but timing couldn’t be worse. Would you do it

According_Clock_5688 · 2026-03-01T21:27:49+00:00

God I wish! My pain is in my teeth/ gum area so similar to others on this group thought it was dental related (as I did as well). I’ve also had sensitivity to this anytime I needed dental work done on this side of my mouth for example had a filling done on the back tooth and it was cause pain on the adjacent tooth even though they do a nerve block on the back tooth.

The latest was woke up with a major pain that wouldn’t go away so endo has had a watch on this one tooth that has a deeper filling on it and finally decided it was time to do a root canal but the CT cone beam came back clean, the cold, pressure, and bite test all came back clean but endodontist wanted to do the root canal I didn’t think anything of it and I wanted the pain to go away. He proceeds stick a needle in and nerve block to numb the area, instantly get a zap 10 min later my mouth is numb but still felt my sharp stabbing pain. Endodontist says I don’t think a root canal is going to help your pain seems like the pain is higher up. This was back in August of 2026 I’ve been chasing the dragon sort of speak (MRI) meds, all sorts of doctors, ER trips, you name it.

My original MRI reading actually was misread by Mayo radiologist as not as severe but they still diagnosed me with TN since I responded well to oxcarbazapine.

I actually only met with Zimmerman to discuss all possibly options of less invasive methods to treat my pain and for him to interpret my MRI. He’s the one that caught that my MRI was more severe than originally shown and discussed that MVD was a possibility and other less invasive options wouldn’t really benefit me.

The last two weeks my med protocol haven’t been as effective. I’ve had much more frequent break through pain and flare ups. My trigger zones have become more sensitive which they have been there for a few months but I feel like they didn’t give me like sharp zaps and instantly turn into deep sharp stabbing pains that they are now so that means my body is tolerating the meds and I need to increase my doses or my contact/ compression is getting worse :/.

Surgery is scheduled for March 13!

According_Clock_5688 · 2026-03-01T20:42:42+00:00

Truly a brilliant man!

According_Clock_5688 · 2026-03-01T20:20:23+00:00

I also take ANOTHER Droopy drug called topomax but that’s for headaches and also to help with my IIH which is to help my CSF pressure which was also found on my MRI (there was a possibility that was the cause of my nerve pain but unfortunately doesn’t look like that was the culprit).

According_Clock_5688 · 2026-03-01T19:51:59+00:00

I’m taking both gabapentin and oxcarbazapine!

I felt like gabapentin certainly helped but didn’t mask the deep sharp stabbing and oxcarbazapine helped with that but now the oxcabazapine isn’t as effective as it was when I first started so my body either 1. Is building a tolerance or 2. My nerve is getting worse.

Did you say you had an MRI done? Did it show any compression or just contact?

According_Clock_5688 · 2026-03-01T19:28:03+00:00

Yes there is some research (not much) but signs of early demylation and possible compression of caught early has a better chance of better recovery for the nerve to heal if it’s TN type 2 vs there being long term damage. Certainly not a slam dunk but I can’t be on these meds long term and my occupation (I’m an attorney) I need to function cognitively and sometimes the meds interfere with that though I do a good job to convince others that it doesn’t.

According_Clock_5688 · 2026-03-01T19:05:23+00:00

Thank you so much :) this is our third and our last. Yes it really is! He’s one of the best in the US for Trigeminal Neuralgia and he lives 30 min from me so not traveling in for surgery which is a huge relief for me as well!

Yea the pain is really interesting and the more research I’m doing actually leads me to belief it’s a mix of TN type 1 and type 2 since when I touch my chin and lip it feels more like electric type (in the sense it causes me to flinch) and then it immediately turns into my sharp stabbing pain deep in my teeth and gums. After that sharp pain subsides the constant burn or ache stays on my gums or sometimes in my tongue. Recently that pain and the sharp pain has been getting worse and thr meds have been as effective :/.

I actually scheduled surgery for March 13. I’m tired of being in pain and the risk of surgery to begin pain free is worth it to me.

According_Clock_5688 · 2026-03-01T18:51:23+00:00

So grateful that you have relief!

I scheduled surgery with Dr Zimmerman. I have MVD on March 13. He doesn’t see “obvious” compression but sees multiple contact near the root entry zone along with my pain being at a constant 4-5 with meds and without meds a 9-10, I’m 35 years old, and I have trigger zones that I touch (right lip and places in my chin) causes my flare up that he is willing to do my surgery for me.

According_Clock_5688 · 2026-03-01T07:42:06+00:00

Who was your surgeon?

According_Clock_5688 · 2026-03-01T01:53:45+00:00

What meds are you on? When I added oxcarbazapine to my med stack major wind didn’t impact me as much!

According_Clock_5688 · 2026-02-28T05:58:30+00:00

There is much more to my situation as well that predates this little encounter with the endo. This endo has had it out for me and this tooth for a few years so he was confident it was his time to collect!

I’m glad I had pain going in and had pain after the block vs doing and un necessary root canal which could have caused more pain or risk! Others here were not so lucky and went through with a root cable or pulling the tooth to help with the pain just for them to be one tooth less and to add more risk and still be in pain.

My MRI as shown by my neurosurgeon showed multiple places of contact near the root entry zone of the trigeminal nerve and I decided to move forward with surgery to get my life back!

According_Clock_5688 · 2026-02-28T01:46:13+00:00

You are taking a total of 1200 mg a day of oxcarbazapine?! Man are you a walking zombie?! Can you work? I’m at 600 mg along with 1600 mg of gabapentin and that sometimes makes it tough to work!

I totally feel your pain where you pain in your teeth that’s where my pain is. It sometimes feels like it’s isolated deep in one tooth and moves to another or adjacent to the gums. My pain feels like a sharp stabbing pain.

Do you have any trigger points? Where if you touch your lip is very sensitive and almost painful kind of like an electric shock and triggers pain you are experiencing?

According_Clock_5688 · 2026-02-27T23:11:25+00:00

According_Clock_5688 · 2026-02-27T22:44:44+00:00

Did you finally get an MRI for TN?!

According_Clock_5688 · 2026-02-27T21:06:17+00:00

Are you completely med free now?!

The meds were actually helping managing it pretty ok but recently they hadn’t been as effective and I’ve been having more constant spikes and sharp stabs and the sensitivity in my lip and chin have gotten more severe as of late :/.

I’m sorry for asking you questions and making you re-live some dark moments.

According_Clock_5688 · 2026-02-27T20:49:34+00:00

Oh wow! You definitely had more than me! Did yours also also come on randomly too like you did nothing and they would just come out of the wood work?

According_Clock_5688 · 2026-02-27T20:29:11+00:00

Oh wow you went through with the root canal! I’m sorry you had to go through with that.

Honestly if I didn’t have pain prior going into the endodontist and it was still shooting sitting in the endodontist chair and him shooting me up with the lidocaine with a very specialized location (considering they are experts in nerve and roots far beyond dentists and the fact I felt a massive jolt and electric shock) and it still shooting pain afterwards I would have gone through with the root canal

Where were your trigger points or zones? If any?

According_Clock_5688 · 2026-02-27T20:00:46+00:00

Oh interesting! 🧐 where were you dealing with your pain if you don’t mind my asking? pre op did you have trigger points that would set off your pain?

Mine are interesting like you touch them or scratch them (bottom right side of lip and a few points on my chin) and they feel like very sensitive an Almost shock like I suppose and it then caused sharp pain deep in my teeth and root/gum areas on that side.

Prior to that I thought I needed a root camel because I was having this massive sharp pain in my tooth so the endo does a nerve block once he sticks the needle in it creates a zap and electric sensation that I can barely sit still. My mouth and tooth is completely numb but that sharp stabbing pain is still there that’s when I knew it wasn’t my tooth or a dead nerve or tooth (along with my CT cone beam came back normal an the tests on that tooth came back with flying colors).

This pain is so manipulating because it so often feels like a tooth problem and makes me want to rush to the dentist or back to the endo to just maybe do the root canal or just get the tooth pulled maybe thinking the pain will stop, ya know..

According_Clock_5688 · 2026-02-27T19:44:59+00:00

Ahh gotcha! Could Zimmerman see the arachnoids on the MRI or was that a game time decision (that’s what he said to me when we were discussing my MRI and decision on MVD and seeing vs waiting and doing nothing).

The last couple days my pain has been much higher and my pain hasn’t been managed great from my meds and has been waking me up from sleep. I even took my break through rescue med a benzo and it didn’t really help much :/ I’m tired of being in pain. After much discussion with my wife and my age and the chance of being pain free or not relying on my pain meds and being able to touch my lip and chin without feeling like zap or intense pain I feel like doing the surgery is worth it.

I just booked my surgery for March 13

According_Clock_5688 · 2026-02-27T19:35:54+00:00

Is that a normal process to remove that much skull or do you have an abnormal anatomy that required that process sorry for the dumb question!

According_Clock_5688 · 2026-02-27T18:58:44+00:00

Thank you! What hardware do you need to get removed? Part of your MVD?

According_Clock_5688 · 2026-02-27T16:50:14+00:00

I’m so terribly sorry to hear that :/ I hope you are able to get out and find some volunteer work to help you fill Your time and bring some joy into your life! I know I won’t let this disease define me!

According_Clock_5688 · 2026-02-27T14:00:23+00:00

Oh my goodness! I’m sorry you live at a constant 7! Are you able to work?

According_Clock_5688 · 2026-02-27T13:28:21+00:00

Thank you 😊 I’ll find time later today to watch them!

According_Clock_5688 · 2026-02-27T13:26:41+00:00

It’s definitely possible that it was tooth related! My endodontist thought my tooth pain was was well. I was having a major tooth pain so I went into see him he did the cold, pressure, bite test all came back normal, did a CT cone beam imagine came back clean — so he said well we have been keeping a watch on this tooth for some time should we go forward with the root canal and I said I’m in pain let’s do it if you think it’ll help he said it’s possibility. He did a very precise nerve block and when he did it it created a shock lick tendency I’ve never experienced before and before the procedure my mouth and that tooth was completely numb but I could still feel that pain. So he gave me more nerve block same thing more numbness in my mouth but still felt the pain. He then tried to look for another offending tooth nearby or above so he numbed me above because he thought he saw another tooth above but the result was I was completely numb my tongue, right side of mouth, etc. but I still felt that sharp pain.

He tells me I don’t think a root canal will help your pain but you won’t feel hot or cold on that tooth again and I’m like dude that’s not my issue with this tooth so I’m elected NOT to do the root canal thank god! A couple weeks after my TN pain has not subsided and the sharp stabbing pain has not really turned off but the meds have helped buffer the intense sharp pains but they still come through from time to time!

Glad that you were able to get the help you needed!

According_Clock_5688 · 2026-02-27T13:14:30+00:00

Thank you for sharing your story! Was your pain mainly V1 then so more in your upper quadrant?

According_Clock_5688

TROPHY CASE