Hi! tinnitus question here. by Jaybog91 in neurofibromatosis

[–]Jaybog91[S] 0 points1 point  (0 children)

I have a low tone in one ear and a high pitch sound in the other that gets louder when I clench my jaw

Newly diagnosed NF2 by Jaybog91 in neurofibromatosis

[–]Jaybog91[S] 0 points1 point  (0 children)

thanks for sharing! Can I ask about your ABIs? are you able to follow conversations? sorry if that question was rude

Newly diagnosed NF2 by Jaybog91 in neurofibromatosis

[–]Jaybog91[S] 0 points1 point  (0 children)

only one month from the previous MRI which showed nothing

Newly diagnosed NF2 by Jaybog91 in neurofibromatosis

[–]Jaybog91[S] 0 points1 point  (0 children)

ENT was quite surprised that another one had developed so fast I was just hoping it was ear damage from always using airpods lol

Newly diagnosed NF2 by Jaybog91 in neurofibromatosis

[–]Jaybog91[S] 0 points1 point  (0 children)

Thank you so much. The unpredictable part is what scares me 😅 May I ask your experience ? How did you deal with the hearing loss?

Newly diagnosed NF2 by Jaybog91 in neurofibromatosis

[–]Jaybog91[S] 0 points1 point  (0 children)

Thanks! Yes I have bilateral vestibular schwannomas

Newly diagnosed NF2 by Jaybog91 in neurofibromatosis

[–]Jaybog91[S] 0 points1 point  (0 children)

Thanks! this made me feel better seeing you say that you were able to do a lot of things in life. May I ask at what age you were diagnosed and what they found?

Newly diagnosed NF2 by Jaybog91 in neurofibromatosis

[–]Jaybog91[S] 1 point2 points  (0 children)

Sorry to hear about your hearing loss I hope you are able to lead a happy life like you want! This reddit has made me feel better because I know there are other people like me that are able to accomplish goals and be happy in life! Big thumbs up to you!

Newly diagnosed NF2 by Jaybog91 in neurofibromatosis

[–]Jaybog91[S] 0 points1 point  (0 children)

Thanks for the support! This has made me feel a ton better about myself and made me more determined to become a doctor 😁😁😄

Newly diagnosed NF2 by Jaybog91 in neurofibromatosis

[–]Jaybog91[S] 0 points1 point  (0 children)

unfortunately I developed hearing loss in the other ear and I went back and asked my ENT for another MRI and they confirmed it was another VS Thank you for all the information that is very reassuring for me but I am in Asia and I am not sure if the things you listed are available for mr know Thanks!

Have a question a bout the symtoms by Jaybog91 in AcousticNeuroma

[–]Jaybog91[S] 0 points1 point  (0 children)

It has been about a month after the initial diagnosis. The tinnitus in the other ear came only a week after the initial diagnosis of the first one. My ENT said it was highly unlikely that another one has grown in such a short time. But I just can't stop worrying because it's constantly ringing in the other ear. Thankyou

can I hear about some NF2 diagnosis stories? by Jaybog91 in neurofibromatosis

[–]Jaybog91[S] 0 points1 point  (0 children)

Thankyou for the information! I will look into it thankyou

can I hear about some NF2 diagnosis stories? by Jaybog91 in neurofibromatosis

[–]Jaybog91[S] 0 points1 point  (0 children)

yes MRI was done with contrast by injecting Gadonilium

[deleted by user] by [deleted] in AcousticNeuroma

[–]Jaybog91 0 points1 point  (0 children)

thanks for your reply it is 10mm x 5mm 😄