Bundle of Nerves (Trigeminal Neuralgia, Glossopharyngeal Neuralgia, Geniculate Neuralgia — MVD)

[TomBradyGOAT]

Well I have been to a Neurosurgeon that works with weird Chronic Facial Pain cases. We did an MRI and on my left side I have Trigeminal Neuralgia, Glossopharyngeal Neuralgia and compression of my Facial nerve which might be Geniculate Neuralgia. On my right side the Trigeminal Nerve is compressed and possibly another nerve. Going to do MVD in August. The pills I take are making me tired and almost crash my car all the time. I am worried. In the back of my head I am afraid it will make my tinnitus worse but also making cure it. I was never a head phone user, concert person, no acoustic truama. Just tinnitus one day with horrible ear/jaw pain.

I do sometimes wonder if it was Tensory Tympani but I had two Neuro ENT's clear me of that. My Stapedial reflex is fine. Also my triggers really aren't always sound. Cold Wind can crush me and cause Migraines after a while. Bending over causes a heavy feeling around my ear. My jaw feels achy and tired. Done all the physical therapies out there. Wore multiple mouth guards. Did botox of my face.

Anyways just getting worried about the MVD surgery. It is brain surgery, but I feel like the pain has gotten to bad. Anybody else have a proven nerve compression on an MRI or exploratory surgery?

 

[Juan]

Well I have been to a Neurosurgeon that works with weird Chronic Facial Pain cases. We did an MRI and on my left side I have Trigeminal Neuralgia, Glossopharyngeal Neuralgia and compression of my Facial nerve which might be Geniculate Neuralgia. On my right side the Trigeminal Nerve is compressed and possibly another nerve. Going to do MVD in August. The pills I take are making me tired and almost crash my car all the time. I am worried. In the back of my head I am afraid it will make my tinnitus worse but also making cure it. I was never a head phone user, concert person, no acoustic truama. Just tinnitus one day with horrible ear/jaw pain.

I do sometimes wonder if it was Tensory Tympani but I had two Neuro ENT's clear me of that. My Stapedial reflex is fine. Also my triggers really aren't always sound. Cold Wind can crush me and cause Migraines after a while. Bending over causes a heavy feeling around my ear. My jaw feels achy and tired. Done all the physical therapies out there. Wore multiple mouth guards. Did botox of my face.

Anyways just getting worried about the MVD surgery. It is brain surgery, but I feel like the pain has gotten to bad. Anybody else have a proven nerve compression on an MRI or exploratory surgery?

So what are your symptoms.. tinnitus and migraine?

 

[TomBradyGOAT]

So what are your symptoms.. tinnitus and migraine?

That and some others. Ache in my jaw even when I haven't been chewing. Pain when inhaling that travels through my nose and causes ear pain. Pain/heavy feeling in jaw/ear when bending over. The migraines usually presents when cold wind gets into my ear canal. When it is really bad I can't turn my head without stabbing pains in ears.

 

[Juan]

That and some others. Ache in my jaw even when I haven't been chewing. Pain when inhaling that travels through my nose and causes ear pain. Pain/heavy feeling in jaw/ear when bending over. The migraines usually presents when cold wind gets into my ear canal. When it is really bad I can't turn my head without stabbing pains in ears.

Sounds pretty bad. I had never heard of some of those symptoms. In principle it does not sound like the typical set of symptoms related to hyperacusis, there may be something else.

 

[TomBradyGOAT]

Sounds pretty bad. I had never heard of some of those symptoms. In principle it does not sound like the typical set of symptoms related to hyperacusis, there may be something else.

Yeah sound isn't much of a trigger. Also

Sounds pretty bad. I had never heard of some of those symptoms. In principle it does not sound like the typical set of symptoms related to hyperacusis, there may be something else.

Yeah my LDL's have been around 100-120. I just have OCD and have a fear of sound hurting my ear. So that is why I was thinking TTTS but that has been ruled out also. That is when I decided on going to a neurosurgeon and he found the nerve compressions. Seems to be what is causing my ear pain.

 

[Laurie1961]

@Juan, I am wondering what triggered your tinnitus. Did you happen to have dental work? Did you buy a new mattress or pillow, new electronics, television, new carpet or work someplace where you might have been exposed to anything?

 

[Contrast]

I'm chipping in here just to say that I experienced facial numbness and face and ear pain from noise injury.

Also "hyperacusis" has no medical definition at all, it's a umbrella term to describe several unclassified audiotory problems. For example, burning ear pain from sound, amplified perception of sound and facial numbness from sound are three seperate problems all merged together with the word hyperacusis

 

[Juan]

@Juan, I am wondering what triggered your tinnitus. Did you happen to have dental work? Did you buy a new mattress or pillow, new electronics, television, new carpet or work someplace where you might have been exposed to anything?

Laurie, all my hearing problems have been caused by noise trauma, very loud noise. I never in my life remembered having any kind of hearing problems, or tinnitus, even when I was able to go to the movies. People report tinnitus after being in a loud environment for a while. I didnt usually go to loud places, but after the movies for instance, I never experience tinnitus. It was after noise trauma that it appeared.

 

[TomBradyGOAT]

Tentatively scheduled for July 12th to have surgery on my left side.

 

[ChrisBoyMonkey]

Tentatively scheduled for July 12th to have surgery on my left side.

How'd the surgery go?

 

[TomBradyGOAT]

How'd the surgery go?

Thanks for asking. Apparently I have no understanding of time. I meant August 12th. It got moved to August 14th.

 

[arctic loon]

Did the surgery lessen the symptoms you have been experiencing? I'm sorry you're going through this. Hope you're doing well!