Hi @kfs, as you know, glomus tumors are also known as paragangliomas. Do you have a glomus jugulare tumor (near the temporal bone of the skull)? What treatment if any have you had?
I developed facial twitches on the left side of my face. I finally told the Doctor about them. Also my ear drum was always inflamed. They always asked did I have ear ache. I didn’t but the twitches were corner of the eyelid, left nostril, edge of my lip and under my jaw. I was referred to an ENT. After having a mri I was told it was a glomus jugulare tumour. I had 5 was of radiation in May 2017. I have continued to have twitches but no where near as often as I used to. I have also discovered that the tinnitus I have had for at least 40 years may have been The tumour causing it. I also have a pretty bad loss of hearing in that ear.
Soo since the treatment I have had several very bad falls. It was said by my family that I have always been clumsy. However these falls I feel are sudden movement causing a form of dizziness where I can’t keep my balance. I have been lucky I have not broken any bones I had 3 months physio for vertigo I have had 3 falls between Dec 24 & Feb 25. Included one in middle of the night that severed an artery in my forehead. Requiring stitches, and being treated for concussion. The veryigo has changed its form and it’s now not when I lie down but I can’t stand and look up without feeling I’m going to fall. So as well as the vertigo & fussiness I sometimes don’t know how to swallow ( it’s quite scary), sometimes the twitches and my hearing is deteriorating. Apparently the tumour had completely filled the cavity behind the eardrum, and had breached the fine bones wall between the jugular burn and the carotid artery so it needed to be stopped. It was not able to be removed because of it being in the artery. I have tried to explain that the falls are not from being clumsy as only once did I try to save myself and in all cases I have not used my arms to try to save myself. Just one minute I’m standing and the next I’m face down and in pain and bleeding. Actually I’m sick of it. I just wish it could be normal. I am also turning 80 in march 2025
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I developed facial twitches on the left side of my face. I finally told the Doctor about them. Also my ear drum was always inflamed. They always asked did I have ear ache. I didn’t but the twitches were corner of the eyelid, left nostril, edge of my lip and under my jaw. I was referred to an ENT. After having a mri I was told it was a glomus jugulare tumour. I had 5 was of radiation in May 2017. I have continued to have twitches but no where near as often as I used to. I have also discovered that the tinnitus I have had for at least 40 years may have been The tumour causing it. I also have a pretty bad loss of hearing in that ear.
Soo since the treatment I have had several very bad falls. It was said by my family that I have always been clumsy. However these falls I feel are sudden movement causing a form of dizziness where I can’t keep my balance. I have been lucky I have not broken any bones I had 3 months physio for vertigo I have had 3 falls between Dec 24 & Feb 25. Included one in middle of the night that severed an artery in my forehead. Requiring stitches, and being treated for concussion. The veryigo has changed its form and it’s now not when I lie down but I can’t stand and look up without feeling I’m going to fall. So as well as the vertigo & fussiness I sometimes don’t know how to swallow ( it’s quite scary), sometimes the twitches and my hearing is deteriorating. Apparently the tumour had completely filled the cavity behind the eardrum, and had breached the fine bones wall between the jugular burn and the carotid artery so it needed to be stopped. It was not able to be removed because of it being in the artery. I have tried to explain that the falls are not from being clumsy as only once did I try to save myself and in all cases I have not used my arms to try to save myself. Just one minute I’m standing and the next I’m face down and in pain and bleeding. Actually I’m sick of it. I just wish it could be normal. I am also turning 80 in march 2025