Author Topic: Symptom progression without growth? Autoimmune issues?  (Read 1266 times)

mattel226

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Symptom progression without growth? Autoimmune issues?
« on: October 13, 2023, 06:23:32 am »
Has anyone found, that their symptoms have progressed without growth in your tumor size? 

I recently had a followup MRI in response to increased hearing loss, tinnitus and fullness, and it showed no growth.  While this was reassuring in one way, it also concerned me that I could potentially have a comorbidity of some sort which could cause that symptom progression - autoimmune inner ear disease being my biggest concern. 

Fortunately, my hearing test on my "good" side was in normal range, but broader autoimmune risk would scare me, beyond the reach of my unilateral AN, as this could put my good ear at risk of much more devastating results.

Hopefully it's just the neuroma causing mischief.... I am looking to get seen by a neurotologist in response, rather my neurosurgeon who isn't an expert in autoimmune considerations. 

Any anecdotes welcome!

mwatto

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Re: Symptom progression without growth? Autoimmune issues?
« Reply #1 on: October 13, 2023, 10:29:57 pm »
I had increased symptoms after the vax two years ago and covid 6 months ago. I think its increased inflammation and maybe microvascular too. Anyway my MRI this year showed further shrinking so thats reassuring. I have also found out my AN symptoms were partly caused by TMJ...!
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

mattel226

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Re: Symptom progression without growth? Autoimmune issues?
« Reply #2 on: October 15, 2023, 08:23:06 am »
That's interesting, because I actually started having TMJ issues earlier this year myself as well.  I've been wearing a splint to try and mitigate that.

Just anxious lately, because the first two years I had my very small (4mm) neuroma were mostly not a notable impediment to my life, whereas the past month and a half has felt a lot more burdensome, with the hearing loss, tinnitus, and fullness.  I know the non-cancerous aspect is a relief, that I'm not dealing with a life-threatening condition generally (especially considering it's not growing and threatening my brainstem), though I'm just sad of late that my symptoms are progressing... and of the expectation that it won't ever really get "better", even with any of the forms of surgery. 

mwatto

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Re: Symptom progression without growth? Autoimmune issues?
« Reply #3 on: October 16, 2023, 01:26:33 am »
Its difficult to really make sense of it all. I had severe earche for 2 years - stabbing pain which ultimately led to diagnosis. No hearing loss or balance or anything else why my doctors refused to even consider MRI. I was told my ears looked healthy and it was all in my head- as only during night. Then after CK I continued - in fact have had the stabbing pain in eye, ear, throat during might- 6 years now! Specialist said def not the AN - my AN has in fact shrank to half and every MRI has shown that. I was reffered back to dentist and a neck and jaw physio...told its TMJ. The mouth guard I only recently got but hate wearing it - however the pain is less and I am also doing certain exercises for TMJ (You Tube got good ones). Am grinding and clenching less confirmed today. I have no other symptoms at the moment. Good hearing, balance and heaps of energy - I have ADHD pretty sure - am never tired. Some cognitive fog and joint pain especially neck and back post Cvid. I play chess a few times a day to stay sharp, listen to music, try to aim for good sleep, reduce stress, light exercise.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing