I think I am getting to the bottom of the main cause of my flare ups

[cerebellarmaniac]

I think I am getting to the bottom of the main cause of my flare ups. I think it is some form of neuralgia/neuritis/neuropathy. Any suggestions would be appreciated

Quick run down:

Diagnosed with cerebellar tumor in 2013. The tumor was removed successfully, but I felt much worse after the surgery and had a terrible migraine/facial pressure continuously for over 6 months. Over the years this sensation flared up less often. However, it always sets me back for days, and sometimes weeks, when it does. I experience severe dizziness, vertigo, facial tension and thinking issues when it flares up.

The neurosurgeon always said you’ll get better, blah, blah. I have consulted with other docs, such as the renowned Dr. Hain, and they think my flare ups are migraine related. Semicircular Canal Dehiscence was ruled out.

However, I’ve always noticed that the weather seems to influence my symptoms. Recently, I have been seeing a vestibular physio who performed gentle massages around my ear and face, which I never tried before. The physio says it is “cranial sacral therapy”. I’m not sure about that or a believer of CST but whatever she is doing seems to have some truth behind it. She claimed she could feel tightness/stiffness. I felt soreness and mild pain. After I first saw her I began to suspect I have some sort of nerve issue or muscle issue.

These symptoms were never an issue before the surgery and I wonder if the trauma from the surgery caused some nerves to become impacted.

Recently I have noticed what feels like a nerve directly above my left ear (where the ear meets the head). I think this nerve may be one of the chief culprits of my flare ups. When I try to do gentle massage around the area close to this suspected nerve, the nerve moves. Interestingly I do not feel this nerve on my right side. I probably should avoid touching this specific area because I think doing so makes me feel worse.

So I also get migraine related vertigo/dizziness, and general dizziness (from picking up boxes, climbing ladders, watching TV) too but generally they’re more tolerable!

Sorry for the long post. I just feel like I need to see a neurologist who specializes in cranial nerves. I would greatly appreciate recommendations or suggestions.

[turnitaround]

Please keep the titles shorter and don’t double post if you can avoid it. I’ve made those edits. There is an edit tool that’s available for some time after first submission. Thank you.

[turnitaround]

A friend of mine had brain surgery and as a result ended up with positional BPPV-like dizziness. Surgery that is invasive into your CSF can cause temporary imbalance in the regulation of CSF pressure I understand. CSF pressure communicates with your ears via the Perilymphatic Duct. Unpredicted fluctuation of this might cause your ears and brain to get confused, ie dizzy (and worse). The anatomy limits this risk but seemingly doesn’t eliminate it.

As an aside I used to get dizzy lifting boxes. I suspect for a similar reason, except in my case the injury was to my ear. Over time this has gone completely.

I would imagine your neuro surgeon is probably right. It will simply get better in time as your body returns to homeostasis.

I doubt you are suffering from a different condition entirely. Too much of a coincidence? Nonetheless the treatment of the symptoms will probably be similar.

[Naejohn]

Hi @cerebellarmaniac, have you researched the Trigeminal nerve?
Here is a visual of its location. File:Trigeminal Nerve.png - Wikimedia Commons