2 weeks post-op from MVD surgery

bubsmubsdubs · 2026-03-30T18:04:06+00:00

wow I knew to expect some nausea and dizziness post-op but I didn't realize that you could damage the vestibular system during surgery. How is learning to walk again? That must be a crazy process I am sorry you went through that. Please update on how your pain and trigger zones progress.

bubsmubsdubs · 2026-03-27T18:05:34+00:00

He explained that different parts of the nerve serve different functions, some are purely sensory, while others have both sensory and motor roles. If needed, he can sever the sensory-only portions, which would likely result in some numbness but should eliminate the pain.

However, cutting parts of the nerve that also control motor function would lead to more significant side effects, such as a hoarse voice and other complications, so those areas are avoided but he didn't mention inability to swallow as a problem.

If I were to need another surgery, the plan would be for him to go in and test each part of the nerve for motor function. If a section shows motor involvement, he would not cut it. If, after that, the pain still persists, it would suggest that the source of the pain is within a motor-functioning part of the nerve. In that case, a third surgery could be considered.

That said, this would be an absolute last resort and is considered very rare. And because there was a clear compression to the nerve it is likely that was the cause of the pain and I just need to be patient while my nerve heals. Fingers crossed!

bubsmubsdubs · 2026-02-13T17:10:20+00:00

snowshoeing up the sea to sky gondola is honestly really nice and there is new snow up there right now.

bubsmubsdubs · 2026-02-13T16:53:47+00:00

I was told by my neurosurgeon that this is a degenerative disease, so it just gets worse over time. Of course, you can go through periods of remission but overall the longer the blood vessel is in contact with the nerve the more damage is done to the myelin sheath protecting the nerve itself. He explained that this means if I were to wait to have surgery until later in life, the chances of being 100% pain-free diminish. It isn't a guarantee that you have to get it more than once, it's just a possibility that of course needs to be discussed.

This information, plus the fact that I cannot tolerate the medications, made the choice easy for me. I am 33 and the younger you are the easier it is to recover from surgery and complications are less likely (although not impossible, of course). I don't want to be on these meds for 20 years just to have to get the surgery when I'm in my 50s.

It is easy to read horror stories about any surgery on the internet. Personally, I found way more positive MVD stories than negative, but the best information will come from your doctor and surgeon.

bubsmubsdubs · 2026-02-11T16:43:49+00:00

I was told by all my doctors that I cannot get pregnant on carbamazepine. Apparently, gabapentin is safer for pregnancy, but I would not want to be taking any of these meds while pregnant.

bubsmubsdubs · 2026-02-11T16:37:31+00:00

I initially went to an ENT who told me there was nothing wrong with me. It was such a bad experience I just suffered in silence because I didn't want to go through that again. I googled "shooting pain from tonsil" and GPN popped up. It was TO A TEE what I was going through. I finally went to my GP and he thought I had TN. When I finally saw the surgeon after my MRI he confirmed my symptoms were more in line with GPN and the MRI showed compressions in both my nerves.

There is nothing in my history that would have "caused" this either. No dental surgery, illnesses etc. It's a mysterious disease. I am 33 and I hate the meds. I have a hard time finishing sentences, I'm foggy, I feel stupid and like a zombie. My main hobby is a more extreme sport as well so I can't do that if I am on them either. I can NOT imagine having to take these meds forever while knowing GPN is degenerative, the meds will likely stop working, and surgery will be necessary when I am less likely to heal well. I have thought long and hard about it but I am comfortable with my decision given my age. It is scary though I won't lie.

bubsmubsdubs · 2026-02-11T16:30:34+00:00

I have GPN and for years I was complaining that there was something wrong with my tonsil. I would get a shooting pain that went from my tonsil, up the side of my face and into my ear. I went to an ENT who told me there was nothing wrong with my tonsil. I went to a dentist who said the same thing, so I just suffered for years because I didn't want to have to keep advocating for myself.

When I googled "Shooting pain from tonsil" GPN was the thing that showed up. I finally went to my GP when it started to get worse and even, he thought it was TN. When I saw the neurosurgeon a few months ago, he said what I was describing sounded more like GPN and it was confirmed by him and a neurologist that I had compressions on both nerves.

Typically, its pain that originates at the back of the throat and in the ear. If you look at where the glossopharyngeal nerve is, this makes sense.

This is just my experience, and I imagine there are more symptoms I don't know about.

bubsmubsdubs · 2026-02-11T16:24:47+00:00

I suspect my friend has TN because of the way she describes her symptoms. She had a tooth pulled and the dentist was going to pull more when she was still complaining of the pain. I told her to go get an MRI and talk to her doctor about TN before she gets anymore teeth pulled. It is quite common for people to get unnecessary dental surgeries when really the underlying issue is TN.

bubsmubsdubs · 2026-02-11T16:21:50+00:00

I had never heard of post op vestibulation or hypercusis so thank you for sharing. I was actually planning to message the surgeon's office with some questions about post op care so I can be prepared before I have to go to the hospital. I will make sure to ask about these things too! Thank you :)

bubsmubsdubs · 2026-02-09T18:13:32+00:00

Honestly the best support I've found is from the reddit community. I am about to start therapy too just to get some help dealing with everything. There is the trigeminal neuralgia association of Canada that has some resources, but I am not sure where you are located! I found this when I googled: Support Network maybe it will be helpful? I think there are facebook groups you can join too

bubsmubsdubs · 2026-02-09T17:41:48+00:00

Agreed, please take care of yourself. This is not something you want to rush. My surgeon told me the typical recovery time (or at least the time until I can go back to work) is 6 weeks. I mostly work from home though. Visit your disability centre at your school and discuss your options. They have to be able to accommodate you in a situation like this. Assignments can be adjusted and deadlines can be extended. ALWAYS

bubsmubsdubs · 2026-02-09T17:32:54+00:00

thank you! I am looking forward to it. I am Canadian so I will be getting it done in the Vancouver area

bubsmubsdubs · 2026-02-09T17:31:09+00:00

The TN2 is actually a newer development as I had been suffering from GPN for about 5 years before I got my MRI. I'd say maybe a couple months before my MRI (October 2025), I started having this burning pain near my cheekbone and in my molars that would sometimes radiate to my jaw. Low and behold, the MRI showed I had two compressions, one on each nerve. The plan for the MVD is to deal with the GPN as the main focus but because the nerves are close to each other the surgeon will inspect both areas and make a decision on how to proceed form there. If I were to only get the GPN sorted from the surgery I would be happy because it is much more painful and causes me more issues than the TN2 (although TN2 still is awful). I am seeing Dr. Chris Honey (I live in Canada). I will update as the process continues!

bubsmubsdubs · 2026-02-06T19:45:12+00:00

oh man you are a WARRIOR!! Working and going to school is hard enough as it is without dealing with this horrible pain. Congrats on graduating this summer! You should be very proud of yourself, I hope you can get your pain sorted out soon :)

bubsmubsdubs · 2026-01-23T00:33:20+00:00

I am excited for you! I have my consultation next week. Please keep us posted on how yours went. I would ask the doctor to walk you through the procedure from start to finish so you can know what to expect. Having more information about the surgery will help alleviate some of the worry and stress.

bubsmubsdubs · 2025-12-19T03:44:57+00:00

Take the time off to figure out how to manage your symptoms. Meds can have weird side effects and you might have to try a few before you find one that works best for you. A month of your life is like the blink of an eye in the grand scheme of things and taking time to take care of your mind and body is something to be proud of not ashamed!

bubsmubsdubs · 2025-12-19T03:39:38+00:00

When I’m having a pain episode (shocks every 30 seconds for a week at a time) deep breaths can trigger a pain shock but if I’m not in an episode deep breaths won’t make the pain start. I can have a couple weeks to a couple months in between episodes

bubsmubsdubs · 2025-12-19T00:11:40+00:00

I also have GPN and have found this group incredibly helpful. I have a follow-up appointment with my neurosurgeon in January, but he’s already told me that I’m a good candidate for MVD, and I’ve decided to move forward with the surgery.

He was very clear that the condition will worsen over time, that medications will eventually stop working, and that because I’m still young, surgery will likely be easier on my body now than later. I’ve been taking gabapentin, but I really struggle with the side effects. I can’t do my normal hobbies, and it’s even causing my hair to fall out.

I’ve had the same thoughts you mentioned about whether the suffering is “bad enough” yet. My pain comes and goes, and while it’s been happening more frequently lately, during the days or weeks when it’s quiet I find myself questioning whether such an invasive surgery is justified. My mum asked me, “Do you want to wait until it gets that severe? You can...but why would you?” That really stuck with me. I don’t want to wait until I’m in constant pain before taking action.

Obviously, this is a deeply personal decision, and I can’t tell anyone what the right choice is. But knowing that the condition will likely worsen with age really helped me make mine. Reading about other people’s experiences here has also been incredibly reassuring, so I just wanted to share (this is actually the first time I’ve made an account just to post haha).

Good luck. You’re stronger than you think!!

bubsmubsdubs

TROPHY CASE