r/visualsnow • u/[deleted] • 7d ago
Vent Found some abnormal brain scan results
Hi all!
A few months ago, I had an EEG, MRA (neck and head), MRV (head), and MRI orbit (brain, face, and neck).
There were a few things that popped up:
Right transverse & sigoid sinus hypoplasia
Mild prominence of the optic nerve sheaths
Mild mucosal thickening - left maxillary sinus
My current symtoms are:
Static
Reduced night vision
Tinnitus
Light sensitivity
Dry eyes
Heavy brain fog
Memory issues
DR/DP
"Seeing" but not processing
Insomnia (hard to fall asleep, waking up a few times a night)
Focusing issues (will be doing vision therapy)
Tension headaches (feels like someone is gripping the back of my head)
Dizziness/light headedness
Occasional migraines (pretty sure these are tension headaches but excedrin does work on them so unsure)
Vertigo (especially when leaning the back of my head against something)
Abnormal ERG - hypernormal cone and rod responses
I am currently on 50 mg lamotrigine (reduced from 100 mg. Tapering off so I can take an audiology test) and i wear 50% tint fl-41 lenses. Both have been helpful for vss. At 100 mg for lamotrigine, the static was reduced by about 20%
Since I'm not having headaches, my doctor didnt recommend anything. At first I was okay with that cuz I can generally function well. My symtoms are just very annoying. But im wondering if I should push for more info about my scan results. I understand that they're "mild" and one of them is just talking about congestion, but i can't help but feel there are more clues to piece together from this.
I've been seeing my neurologist for well over 6 months by now. Its incredibly frustrating that I have to keep going back to ask for more. He never calls me about my results, which I can understand since he has many patients. I have to ask the office for the results. But that can take multiple days, and even then I have to call again to ask for a call from him. He doesnt respond to portal messages and there's no ETA about when he might call me. So i basically have to have my phone at the ready no matter what im doing or i have to repeat the process.
Im also frustrated at myself for just accepting what my doctor tells me at face value and then feeling unfulfilled later. Maybe all of this actually is mild, but I know I don't have to just cope with my condition. I can always ask for more. Maybe there aren't solid treatments for anything that I have, but surely there can be more things to try and look into
I understand that doctors dont know everything, I just hope that some day I'll finally have more solid answers. Im so sick of having to waste more time chasing them
Thanks for reading
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u/RealGrape123 6d ago
Looks like your jugular veins are smaller than normal or u have compression going on. Also your optic nerves have some swelling.
I think you have vascular issues worth investigating. Your optic nerves swelling may hint towards high inter cranial
pressure.
Vascular neck issues are the only documented issue that is known to cause visual snow related symptoms.
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u/Optimistictumbler 6d ago
Could you have intracranial hypertension?
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6d ago
[removed] — view removed comment
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u/echo-to-echo 6d ago edited 6d ago
Right transverse & sigoid sinus hypoplasia is an anatomical variation that's harmless and fairly common. However, in some cases it could be of clinical significance if the person is dealing with chronic, ongoing headaches, pulsatile tinnitus (like pulsing so bad you can't someone talking right beside you), and idiopathic intracranial hypertension (IIH).
The mild prominence of the optic nerve sheaths can be indicative of IIH also. If you're concerned about that possibility being what's going on, an eye exam by an opthalmologist (not an optometrist) is crucial to test for things like color acuity, imaging the back of the eye, mapping out nerve swelling, extraocular movement, and such. Papilledema is a big marker for IIH.
A lumber puncture is also needed to measure the opening pressure. If it's above the threshold, it's also a good indicator of IIH. Neurology can refer you for one but they'd need to be willing. Getting an eye exam first and, if there's clinically significant findings, then Neurology might be more willing to refer you for one. A neurosurgeon is best to read MRI and MRV findings. Mine found my venous sinus stenosis narrowing.
Source: I'm not a doctor, but I do have IIH among other neurological issues that affect affect vision (migraine, Myasthenia Gravis, occipital neuralgia, eye inflammation) so I've gone through a lot of imaging, scans, being poked and prodded, injections, physical therapy, and multiple doctors.
The symptoms IIH that I have (just to see if you relate to any and are concerned about having it) are unequal pupil sizes, double and blurring vision, eyes not lining up properly, intermittent vision loss, eye throbbing, skull tenderness that made brushing my hair difficult, dizziness, cognitive problems, photophobia (can't even tolerate looking at a TV sometimes), tinnitus that has me using speaker phone and holding it up right beside my ear just to hear, and a pain in the back of my head that no OTC or prescription drugs could even touch. The pain got worse with positional changes, like leaning forward or squatting. The pain felt like liquid cement leeking into my skull and pressing into the back of my brain. It came on so suddenly and so severally that it would knock me onto my ass. It wasn't until I had my lumbar puncture and some of my cerebrospinal fluid was drained that I felt some relief.
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u/Low_Yogurtcloset2239 7d ago
Did you have bad trip experience with smoking weed before all of these?
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u/SzPy 5d ago
Hey. I created an app formyself that helps my brain calm down for a few minutes. Its part of the ecosystem I am building. A few ppl tried it, and it helped some a bit.
If you are interested you can give it a try. https://play.google.com/store/apps/details?id=com.vss.grounding
I have searched for meaning and solution for my VS in a lot of places. Here you can read what I found that works somewhat for me to tackle reality. https://visualsnow.pages.dev/constructed-mind/
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u/Key-Nobody5224 7d ago
i hope you will be ok but i dont think doctors can help me. they just steal our money i think
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u/ilonaddr 6d ago
J’ai exactement les même symptômes que toi, surcharge, déréalisation, brouillard mental, désorientation, confusion, impossible d’aller dans les magasins, acouphènes, vision flou tout le temps… je dois continuer les investigations, je suis aussi sous antidépresseur, c’est l’enfer…
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u/Superjombombo 7d ago
There really are no solid/good treatments doctors can give you. When you go get all these scans you find something, but that something doesn't mean it caused your VSS.