Could it be an Acoustic Neuroma?

[equipix]

Hi, I'm new here and would like some guidance. I was sent to the emergency room this week for a possible stroke. I woke up with hearing gone in my right ear. It came back later that day. The next morning I woke up with muffled hearing and the right side of my face completely numb, a bit of mouth droop, trouble forming some words, some mild jaw pain and cheek and eyebrow pain, and a bit of a headache above the right eye. After a complete workup in the emergency room and an overnight stay, the only thing they could suggest to me was a TIA (all tests were perfectly normal) My MRI without contrast showed no tumors or MS. Interestingly, TIA's resolve within minutes to 24 hours. I am now on day 5 with the numbness in the face and now tinnitus that waxes and wanes in the right ear. In researching on Dr. Google, the only two things that appear with these symptoms is TIA's and AN's. I have been clumsy since I was a teenager (54 now), but have fallen to the ground over my own two feet in the last 3 months. Also, I was having some lightheadeness in the last 3 months which prompted my Dr. to send me to a Cardiologist. I'm as healthy as a horse, so to speak. I do have a video appt. with an ENT (because of the Coronoa virus, no physical appt.). If he finds nothing, then back to the Neurologist for more ideas. How often to AN's show up in MRI's without contrast? Is it possible there is one causing these symptoms and it was missed? Thanks for any suggestions and insights.

[Kristyll]

It has got similar symptoms but you need a diagnosis and assurance it is NOT an AN before any other decisions could be discussed. It must be worrying if not terrifying. Good luck xx

[equipix in reply to Kristyll]

Thank you! Yes, I have the initial appt. set up by video with an ENT, but not a physical appt for another month (assuming we can even do that) Hoping somebody finds something...I still have the numbness, tingling, tinnitus and intermittent hearing issues on that side 7 days later. I'm not hanging on to the TIA diagnosis, those symptoms wouldn't still be happening. I will keep this post updated as I learn more. Thanks for the quick response!

[Kristyll in reply to Kristyll]

There is any possibility of many things including AN,but continue until you get a definate diagnosis as until then you cannot really be advised. Good luck xx

[Tabbycat]

Good morning equipix, sorry to hear about all you are going through, made even more difficult by having to cope with the current Covid-19 situation I should think.

The gold standard test for diagnosing an Acoustic Neuroma is an MRI scan with contrast, if possible. When I was referred to an ENT specialist with loss of hearing on my right side, they gave me an MRI without contrast at my local hospital 'just to rule anything sinister out'. The ENT consultant said he thought it might be an AN, but referred me on to the skull base team at the nearest specialist hospital, where my scan results were looked at by no less than two brain surgeons and a consultant radiologist. They confirmed the diagnosis.

Acoustic Neuromas are quite rare; they need to be diagnosed by a specialist in that field.

Since my initial diagnosis 6 years ago, I have had an MRI scan with contrast every year at the specialist hospital . I've noticed that the quality of the image is much better than the original one, which makes it easier to measure (and presumably to diagnose in the first place).

Stay well and safe!

[equipix in reply to Tabbycat]

Thank you so much! That's exactly what they did to rule out a TIA. Image showed nothing but some white matter change deep in the left side of the brain, but it was without contrast. They did refer me to an ENT. 7 days later, I still have numbness, tinnitus and varying amounts of hearing on the right side. Something isn't right, but exactly what it is won't be known until I can at least see an ENT. Just a waiting game at this point. Thank's for some insight as to your experience!

[handmaid]

I have a left sided AN it was picked up with out the contrast, followed up with an MRI with contrast to get a clearer picture. That was 20 years ago, I have an annual hearing test & MRI luckily there has been no change.

I also have "Charcot Marie Tooth Disease" I have very weak ankles, my feet are floppy i trip over my toes so I wear splints to keep my toes up. It also affects my hands very poor grip. i had appt with the neurologist who organised blood tests & electrical conduction tests. May be worth googling?

Look after your self & stay safe, please let me know how you get on.

Shani

[equipix in reply to handmaid]

Shani, I hope they can do something to help you! That sounds so horrible to have happen. I will google it. It's hard to tell what causes a lot of my general symptoms as I have Fibromyalgia (since 1998) and had a really bad Lyme case in 2012. A lot of issues are residual (mostly arthritis and slight memory issues) I've been very fortunate. These symptoms came on suddenly and were so bizarre that I don't think they have anything to do with my other issues (as those two ailments have been under control for a few years now) I've never heard of "Charcot". I'm curious as to what I learn. Please take good care of yourself!

[Tabbycat]

Good morning equipix and hello handmaid

I think the waiting and not knowing is in some ways the worst part of all this. I was on 'wait and watch' for four years after diagnosis and each time there were long gaps between getting an appointment letter; having an MRI; getting the results letter; and finally seeing the skull base team to discuss the next steps. Now I am two years on from Gamma Knife Surgery and my annual MRI has just been cancelled - so that's when my imagination goes into overdrive!

Keeping you both in my thoughts,

Tabbycat

[equipix in reply to Tabbycat]

Waiting is certainly difficult. I think I will be happier knowing what it its. Issue for me is, based on the symptoms, it's either hereditary TIA (which I have no control over as my arteries are clear, my heart is fantastic, etc.) or according to Dr. Google, an acoustic neuroma. Neither is desirable. Although the AN might be something that can be worked with and possible fixed...the TIA may eventually lead to a massive stroke

[thesoundguy]

I'm not a doctor, but it sounds like this could be Bell's Palsy. Unfortunately, your window for treating it quickly has probably passed. Has anything changed since your post? Hope you're feeling better

[Basco77]

I can only speak for myself but my AN showed up with out the contrast. I was then given a MRI with contrast for a more detailed check.

I hope u get answers soon, it's probably more worrying not knowing.

[Burble]

I'm waiting to see a specialist about unilateral tinnitus and possibility of acoustic neuroma. I've been waiting for a month since referral but have head nothing from hospital. How.long have you been waiting?

[equipix in reply to Burble]

I got in within a month to my ENT. Since then, I've had a battery of tests. It's not a neuroma. I had biopsy for Small Fiber Neuropathy and that is positive possibly secondary to Sjogren's Syndrome or another autoimmune disease. I wish you good luck! Everything is backed up due to covid.