I am up here in the wee hours of the morning sort of freaking out. (OK OK really
I had one atypical unilateral XXL acoustic neuroma tumor removed 2 years ago. Prior to that surgery I had 100% word recognition plus it was such a weird shape that some neurotologists were NOT convinced it was actually an acoustic neuroma in the MRI ( before the surgery). So nothing in my acoustic neuroma case has been typical.
All hearing was sacrificed in the AN side so I am SSD now. Since I woke up from the surgery I have had terrible hyperacusis in the â€œgoodâ€ ear. It never went away. I tried the various audio-desensitizing tapes, reducing earplug use etc- nada. In my support group meetings I am THE ONLY one who has to always wear an earplug in the good ear. This seemed to be the case when I attended the recent Chicago symposium also. â€œWhy did I get the hyperacusis, in the good ear, so much worse than the rest of them?
â€ I often ask.
The hyperacusis has not improved and some days I think it is gradually gotten worse.
I made a remarkable â€œbalanceâ€ recovery from that surgery- (my face I cannot brag about since I have synkenisis.) Over this summer however I am noticing a bizarre but subtle regression in my balance. I have been getting periodic tinnitus in the â€œgoodâ€ ear. This past month I have had some communication break downs where I have heard incorrectly- on the phone in my good ear (Similar to what I experienced in my old phone ear that is now 100% deaf- before diagnoses of the AN- as hearing on higher frequencies fastly reduced).
This morning I woke up with a full ear sensation in my GOOD ear. The hearing is muffled and the tinnitus (which is pulsating
) seems constant â€“ however at a different frequency than the other ear that had the acoustic neuroma removed. You would think with the muffled hearing the hyperacusis would be reduced
- NADA. No matter how many times I yawn- this will not go away. I do not have a cold or sinus issues at the moment (although I did at the beginning of August)
I DO have a family history of unilateral
deafness. The reasons never known as there were no MRIâ€™s in those days. My father has unilateral hearing issues, balance issues and some facial weakness. Both he and my sibling have constant tinnitus. He thinks the balance problems is due to the 2 hip replacement and the other symptoms are just due to age
(I have written to him- yet his ENT sees no need to do an MRI â€¦and he is Canada) My youngest child has had on going ENT issues and too is showing signs of hyperacusis. (I wonâ€™t even start in her early childhood radiation exposure â€“ with infant chest x- rays etc) When there is deep bass music in her dance class I see she is not maintaining her balance as the others in her class are. (I too had this issue in my youth) She is also showing facial asymmetry in her growth with her nose (as I have). She is just age 10 Â½.
As far as I know, because my tumor was huge and unilateral, that an NF2 pathology was NOT performed on the dissected tumor. I do not think NF2 was even considered a possibility in my case.
Quite frankly I feel I am showing signs now of an acoustic neuroma in the GOOD ear. I have woken up very deaf this morning (although not completely)
Freaking out here- not wanting to mention anything to my family until I get the follow up MRI results and talk with a neurtologist. (The MRI order is overdue with my Dr- as I wait for them to get their forms in.)
Did any of you NF2 folks ever have just one large tumor first- and then later the other one appeared? Or do these typically both appear at the same time at the same rate of growth? (Not that anything about my case has ever been â€œtypicalâ€)
I guess I am needing an ANA support group hugâ€¦ as I sit here at my laptop mulling over the possibilities of the recent symptoms: new â€œbalance regressionâ€, new â€œtinnitusâ€ in the good ear, new â€œsense of fullnessâ€ in the GOOD ear. (the quoted words I am all too familiar hearing- on this forum.)