I had translab surgery July, 2022. About 7 months later I noticed a decrease in taste sensation and over time felt I was dripping fluid from the roof of my mouth that needed to be sucked out.  The taste of that secretion has gotten worse.  Occasionally it leaks from my nose, and down my throat and the taste is rancid vinegar.  It's awful not tasting food, barely getting sweet. I can taste salt (even in Ice Cream which I have no tolerance for - its too cold and feels as though it burns my mouth).  MRI an CT scans have conclude negative for CSF yet  that how it feels. Occasionally cranial pressure, leaking, occasional nose bleeds, blah blah blah. Any thoughts or guidance would be very much appreciated.  I am very frustrated and have a har time sitting up for long periods of time. Symptoms worsen with exercise. I do feel better lying down. thank you for listening to my rant.

Hey carriekartman,

I normally don't check these forums frequently enough but this one stood out, due to my personal experience.
Not sure if you're still checking these, since it's been a few months.

I had my dx on Oct 24, 2023 and a couple weeks afterwards had appointments back to back with all three of these doctors. It was a rough day. Lots of information. I had my partner with me and she helped take notes.
I saw Dr. Xu, then Sheridan then Pross. Pross is the ENT and was probably the most helpful and most emphatic. He pointed to some studies, he is the one who let me know about the AN website, which I feel is a must for anyone newly diagnosed, and felt like I could have a conversation with and ask questions.
He also responded quickly to any emails afterwards with additional links to various recent information.
Dr.Xu talked mostly about microsurgery details, different approaches, outcomes and she seemed to be running through all the jargon w/o allowing for any questions until she was finished. Dr.Sheridan seemed a little standoffish to us. He was very brief. He said radiosurgery is possible but very likely hearing loss would be inevitable from the procedure, otherwise, he almost seemed uninterested or not concerned?
Anyway, all of them at the time suggested to wait and see (due to my tumor size) and seemed like they tried to reassure me that I might not even require surgery. I feel they were knowledgable but I did not feel a lot of confidence or reassurance (maybe that's unfair given this condition).


 

Hi.

I had mono-aural tinnitus for 4 years. At the time the doctors (I live in the Netherlands) thought that the monoaural tinnitus was not enough to warrant an MRI.
I also had a lot of issues with clicking and popping ears over the years, and my (non-tinnitus) left ear hurt very often, along with some mild dizziness, so I didn't imagine this could be a neuroma, just the same stuff on the other ear.
Two years ago I was sure I was hearing worse from my right ear, so I went to the doctor. They found a loss of -5 dB, but told me that was not realy worrisome at all, called me crazy, sent me home.

Later (1 year ago), the tinnitus was increasing again, and becoming much more erratic, and I started noticing sound distortions in voices (in retrospect, they were already there 4 years ago, but they just become more pronounced).

As the tinnitus and the hearing got worse, I sank into depression - anxiety, constant stress...As part of an attempt to improve my general health condition I went again to the ENT. This time the hearing test showed a -35 dB loss on my right year, and I finally got an MRI. When the results of the MRI came, I was diagnosed with an acoustic neuroma 1x1.5cm, right side.

Now, that was 2.5 months ago. Since then, I had one appointment with a Neuroma specialist who set me up for am MRI in June. Besides that, I got a balance test - for which I don't know the results. So the specialist seems to treat my condition as slowly developping and told me not to worry too much, and carry on with my normal life.

However, in  terms of symptoms, the last 2.5 months have been awful.

-My tinnitus increased a lot, and varies intensity and type (from single frequency to a "fridge"-like noise) often. Worse, I never had problems sleeping, now the tinnitus wakes me up at night. I am now without sleep for 3 nights in a row, with a lot of anxiety in the mix (chest pains, palpitations).
-The hearing on my neuroma ear (the right one) is noticeably getting worse every day. I can now almost not understand any speech if I block the other ear, nor hear birds chirping oustside - and they are pretty loud. The distortion makes it difficult to hear many things, and I often plug it, but then the other ear hurts more. 
-I had a nose infection 2 months ago and since, my other ear hurts and clicks all the time. Today I noticed I am also not hearing as well as usual from it. My complaints about issues with the left (non AN) ear have always been left unresolved by doctors since I was a teenager (I am now 48), but over 30 years I had many crisis of bad hearing, pain, and dizziness. The ENT that saw me for the neuroma told me my other ear was fine, even as I told him about the pain.
-I am often dizzy, and I noticed some balance issues.
-I am often in panic, with the idea of becoming SSD, but also, given the problems with my left ear, that I can become fully deaf soon.

Now, I am telling you all this because I am feeling quite desperate. The ENT set me up a phone appointment for 2 weeks from now. In the meanwhile, I have no accompaniment except for a psychologist that is trying to give me coping techniques to deal with all the symptoms.
I feel terrible most of the time.

I am not seeking medical advice here, obviously. But my family tells me I need to find more medical help. I am fine with trying that, but I do not know what or whom to ask for.

Right now I have an MRI scheduled for June, a call with my ENT in 2.5 weeks, and a psychologist specialised in neuro with whom I talk every week. I am taking some supplements and since Friday, because of not sleeping, my GP gave me a mild anti-depressant.

Any ideas on what I could I do, what type of doctors/therapists should I see?

Edit: lots of small corrections… I am without sleep for three days, it is taking a toll on my linguistic skills.

I am brand new here. Not yet diagnosed, but expecting to be diagnosed as I have self-diagnosed with AN. But here is my simple question - was your hearing restored?

Greetings Rumen -

I hesitate to answer your question.  Please remember everyone's journey is different. I can only let you know my journey and it is in no way any advice to you!

Feb 2019 tumor diagnosed. consulted U of MN and Mayo.  Decided on Mayo.  Both gave the option for either Gamma or surgery.  Decided I would rather not open my head up if I didn't have to.

July 2019 Gamma at Mayo.  Knowing that it was fast growing they calculated the highest safe dose.  Follow up MRIs annually - showed some dying, but Nov 2022 MRI clearly indicated death of only 1 side of the tumor - the other side continuing growth. Surgery recommended now as a second dose of radiation would likely have same outcome.

Worried for surgery as radiation can turn tumors "sticky".  January 2023 Mayo surgery to remove the tumor - surgeons feel like they got it all!  Doing very well post surgery!  Now MRIs only every 2 years.

You need to weigh the risks and benefits for you.  No one else will have your exact tumor or circumstances.

PEACE!!