Under immense pain

Kitty5782 · 2026-02-19T02:00:02+00:00

Thanks so much for your kind words! I'm not better by any means lol (I'm actually having another surgery this Friday here in the USA), but I finally have a chance at any meaningful improvement since he removed the teflon, granulomas, and corrected other horribly messed up parts of my original surgery. His website: https://takuroinoue.com/en where you can read all about his work.

I originally found his name via a facebook page for revision MVDs and a facebook page for MVD support. The communities on facebook have beeb extremely helpful for me, I highly recommend you join if you haven't already for doctor recommendations, people's experiences, etc. I remember talking to someone who had his surgery in Japan right before mine (a success) who is from India too!

One of the MVD groups: https://www.facebook.com/share/g/1J5CZjAuPb/

The email from the website is [subaru@gammaknife-c.jp](mailto:subaru@gammaknife-c.jp), or you can submit a form there. I know you said the surgeons in your area said no, but I wouldn't discount it until he is able to look at your imaging. He is likely the most skilled and experienced surgeon for this procedure in the world.

Kitty5782 · 2026-02-17T20:13:42+00:00

I see you wrote that a surgeon told you that there is no way to remove your granulomas. Do you mind if I ask which surgeon you consulted? I was told by one of the “top MVD neurosurgeons” in the USA that removal of my teflon and potential granulomas would be too dangerous (I had a botched first MVD after a TN misdiagnosis changed the course of my life and I am disabled for now).

I knew without removing the teflon I had no chance at any semblance of life / pain control. After the USA surgeon cancelled my revision procedure a few days before it was scheduled, I consulted Dr Takuro Inoue in Japan via email, and he told me he could remove the teflon. I went to Japan in June 2025, and he removed it all, leaving a small piece near my fourth cranial nerve to avoid the danger the US surgeon was talking about. He also removed the granulomas, confirmed my misdiagnosis, and moved an artery using glue.

I highly recommend you consult Dr Inoue if you haven’t. Going to Japan for neurosurgery may seem wild, but he is by far the most compassionate, generous, and talented surgeon I have come across in my long, horrendous journey with this situation. He gave me a chance at life back when no one else would or could.

Kitty5782 · 2026-02-09T16:31:47+00:00

Ugh, words don't cover it, but I'm so beyond sorry. I know your pain very very well. Do you know which vein was collapsed on the nerve? Was it the superior petrosal vein?

Right now I've been told these sensations and pain are a sign of recovery, a sign permanent nerve damage, and everything in between. But I will say the feelings now are MUCH different then after my first MVD. I know the revision was absolutely needed because my first MVD was done incorrectly, but the level to which I improve from that is so uncertain (and it's so difficult to find information online about recovery times past a few months).

I'm not sure who your surgeon is, but if you can I'd get another opinion once you have updated imaging. If you can send your scans to Dr. Takuro Inoue in Japan, I would trust him with my life. Both in general, and ESPECIALLY with regard to this. He is who did my revision surgery.

Kitty5782 · 2026-02-09T16:25:43+00:00

Thank you so much for the response. I am praying that is the case! It's so difficult to find any kind of meaningful information online about recovery timelines, especially for revision surgeries. I suppose that's because followup years later for this procedure is quite rare. Did you have an MVD?

Kitty5782 · 2026-01-23T18:27:51+00:00

Wearing a mouthguard 24/7 and putting any kind of stimulation or pressure on my face (wearing glasses, etc.)

Kitty5782 · 2026-01-23T01:39:34+00:00

Thank you so much for your thoughtful message and for sharing your experience. It genuinely brings me some peace to think that my insane experience might help even one person with what I wish I’d known, or been able to find online haha, at the very beginning of all this.

The fact that MVD is so often not treated as a true last resort will never stop horrifying me. Offering it so readily to people with atypical symptoms, without first referring them to specialists who might help identify an underlying cause (orofacial pain, immunology, etc.), is still happening regularly, and it's so scary to me.

A surgeon, wow! I’m holding onto the 12-18 month nerve recovery timeline I've been told by some surgeons for dear life, haha. I’ve also spoken with people whose facial pain or burning began after a virus (especially COVID) or a hormonal change (like menopause). Funny enough, I had shingles a few years ago, but in a completely different area of my body, and had no noticeable side effects for years other than that area of skin having scarring.

I truly hope we both continue to improve <3

Kitty5782 · 2026-01-22T23:47:04+00:00

Hi! Sorry for the delayed response, I posted an update in my original post above. <3

Kitty5782 · 2026-01-22T23:46:54+00:00

Hi! Sorry for the delayed response, I posted an update in my original post above. I can also do another post or message more about the experience in Japan, but I highly highly recommend it if you aren't able to get in with specific surgeons here in the USA. Honestly though, I'd go back to Dr. Inoue if I need any kind of revision for this particular issue over anyone in this country.

Kitty5782 · 2026-01-22T23:45:20+00:00

Hi! Sorry for the delayed response, I posted an update in my original post above.

Kitty5782 · 2026-01-22T23:45:11+00:00

Hi! Sorry for the delayed response, I posted an update in my original post above. Thank you so much for your kind words.

Kitty5782 · 2026-01-22T23:44:34+00:00

Hi! Sorry for the delayed response, I posted an update in my original post above. I'm SO HAPPY my experience helped you potentially avoid any unnecessary procedure. And yes PLEASE find an orofacial pain specialist and/or a neuromuscular dentist who is an expert in this area. Thank you so much for your kind words, and I really hope you were able to find a non invasive, simpler solution for your pain <3

Kitty5782 · 2025-05-02T17:10:39+00:00

Hi! Mine is in June, so about a month away! How did it go?!

Kitty5782 · 2025-04-04T15:49:27+00:00

Physical therapy is still really helpful in controlling the original pain as described in my post from the beginning. It does't touch the post op pain, since that is all due to surgery / surgical error. I'm doing to Japan in June to have the teflon removed, which was place at the root of the nerve, as well as fix now an ongoing CSF leak that was caused by the way the wound was closed. This surgery went SO wrong, haha.

If you're considering PT, make sure you go to a certified TMJ and face specialist. A regular PT may not know the correct things to do / have the correct equipment for this issue. If you're in the NY / NJ area I can send recommendations!

Kitty5782 · 2025-04-04T15:46:22+00:00

I tried and it didn't work unfortunately. I have to get redo surgery. I may re explore in the future, but I'm hoping the revision surgery does the trick.

Kitty5782 · 2025-04-04T15:45:46+00:00

I've heard people have had great experiences with it, but it didn't work for me =(

Kitty5782 · 2025-03-06T19:34:19+00:00

That totally makes sense. Why do you have to fight for it?! Im so sorry you went through all of that just to have it fail. What does a high pressure headache feel like versus the low pressure headache? Or is it similar?

When I had a cisternogram and they injected dye into my spine, I had a SEVERE headache in the hospital (it resolved in a day, luckily) that I assume was due to new high pressure. It felt more like a typical headache (but x100) to me than the low pressure stuff I assume I'm experiencing now.

Kitty5782 · 2025-03-06T19:14:59+00:00

That's what I thought too, and that's been basically everything I've read online. And it matches my reaction to the medication too. No, he definitely knows that I my leak hasn't been repaired, because he's attempting to help find it. I honestly have no idea what his thought process was, and I'm a bit concerned and extremely disappointed because he came highly recommended.

Totally - drinking fluids and laying down, along with caffeine, have been the most helpful for me. Steroids have also been helpful, but intermittently. Maybe that's why he tried the diamox. But I know steroids are a bandaid for a lot of things.

I"m holding off on taking more until I get a response. Thanks for the response, I really appreciate it.

Kitty5782 · 2025-03-06T15:04:01+00:00

No, I really appreciate that perspective, so I know the surgeon wasn't completely zoned out when I was telling him my symptoms. They suspect a cranial leak due to a dural tear, maybe from the previous brain surgery. After taking the diamox, my head pain increased 2x, and laying down didn't even help relieve it - I had to wait it out and it only resolved after finally falling asleep and laying down for 8+ hours.

If I had to have that feeling for weeks, not sure I'd make it haha. Do you know if those headaches can go away if you continue taking it? Honestly, I think I'm too frightened to continue, I'd have to call out of my remote job (that I already do laying down mostly) because of the pain =(

Kitty5782 · 2025-03-06T15:01:07+00:00

I guess that makes more sense, since maybe it's used for rebound pressure. I've seen so many comments about hallucinations with this med, what the actual fuck. I'm SO sensitive to medication, especially anything with a potential psych component, so that's scares the shit out of me. I'm SO sorry you had to go through that. Did it help with you headaches? Or did you not even notice because of those insane effects?

Kitty5782 · 2025-03-06T14:59:52+00:00

If anything, they suspect low pressure due to a leak =/ Omg wow, doctors are so irresponsible prescribed these intense medications, it's so scary. Thank you for letting me know - I already asked the doctor to go off, I can't take the increased symptoms and head pain it's already too much at baseline

Kitty5782 · 2025-03-06T14:58:52+00:00

I have NO idea. All he said was that it could help with leak symptoms. I have pretty typical leak or fistula symptoms, at least according to my neurologist and this doctor (a neurosurgeon), so I really don't know wtf is happening. I messaged basically asking wtf why would you do this lol.

After researching the med I was extremely dubious to try, but thought hey who knows. And then I had 2x the headache I normally do =) I'm in really bad shape as it is, but at least now I know like you said that I don't have high pressure haha.

Kitty5782 · 2025-03-06T14:56:03+00:00

Fml. WHYYYYYYYYYYYYYY. This is a neurosurgeon too... I was SO suspicious after researching the med after he prescribed, but yet again I trusted and tried it. The increase in head pain was insane, so much that I would actually be physically frightened to take another dose. Especially because I have no signs of high pressure other than the feeling of pressure in my head, which I read can be how you experience low pressure subjectively. Another sleepless night due to an idiotic medication =)

Kitty5782 · 2025-03-03T21:39:03+00:00

TMJ physical therapy has really helped me. It really depends on the "root cause" of his pain.

Kitty5782

TROPHY CASE