MY SCHWANNOMA STORY (TUMOR)

[ainaaaaaaae]

Hello, my story began a year ago when I was 23 years old, I started to suffer horrible headaches, and after going to the doctor several times I was diagnosed with a tumor. 
After the detection and several weeks between the operation and months of recovery, I became deaf on the left side and today I'm still getting used to live with them. Soon I will have the Mel el cochlear implant and I am very eager to know if this can be of any help to me! Glad to be moving on after all 😊.

I am a student of tourism at the University of the Balearic Islands and I am doing my final degree project on labor inclusivity in the tourism sector for people with deafness and/or hypoacusis. I suffered a lot of headaches. The consequences of this removal have been deafness on the left side.
Could you help me by answering this form that I attach below and if possible forward it or share it so that it reaches more people? Thank you very much! ❣️
You can find the form in Spanish, Catalan and English.
Any help will be welcome!

I attach the link: https://forms.office.com/pages/responsepage.aspx?id=WDS7cV_XFkely2R82svArzNEqa_toGhHt4Na8MliXkBUMTY3VTdZNzBaT0c1UEtLNk9JSk5TRVRPNS4u

[Treb]

Hi ainaaaaaaae, I had a vestibular schwannoma diagnosed in 2012 after balance and hearing loss on my right side. I had it treated with gamma knife radiosurgery and it has since shrivelled away to almost nothing over the intervening years. I had tried to cope with the CROS hearing aid solution for my deaf side but it never really helped much, especially in noisy environments. 

My audiologist determined that my deaf ear was still responding to very low frequencies and that there might be enough functioning nerve for a cochlear implant to provide some restoration of hearing. I went for Med-el because of the long electrode which could get right up into the low frequency area of my cochlear. I had the implant in February 2023 and it was found that my brain responded to all 12 electrodes. Almost immediately after switching on everything sounded much better while listening with both ears. I have been diligently doing the daily training with each mapping, feeding all sound through the implant with rapid improvement which has now plateaued, but still improving. I can follow audiobooks, receive phone calls etc, all through the implant. Listening with both ears to full stereo now sounds awesome again. I’m now concentrating on listening to music through the implant, initially it was awful but is now improving to the extent I can recognise singers voices and some instruments. 

I am so glad I had the implant after thinking the schwannoma and the radiosurgery would have completely killed my hearing nerve. Hopefully your journey will be a good one as well. 

[ainaaaaaaae]

On 3/10/2024 at 2:08 AM, Treb said:

Hi ainaaaaaaae, I had a vestibular schwannoma diagnosed in 2012 after balance and hearing loss on my right side. I had it treated with gamma knife radiosurgery and it has since shrivelled away to almost nothing over the intervening years. I had tried to cope with the CROS hearing aid solution for my deaf side but it never really helped much, especially in noisy environments. 

My audiologist determined that my deaf ear was still responding to very low frequencies and that there might be enough functioning nerve for a cochlear implant to provide some restoration of hearing. I went for Med-el because of the long electrode which could get right up into the low frequency area of my cochlear. I had the implant in February 2023 and it was found that my brain responded to all 12 electrodes. Almost immediately after switching on everything sounded much better while listening with both ears. I have been diligently doing the daily training with each mapping, feeding all sound through the implant with rapid improvement which has now plateaued, but still improving. I can follow audiobooks, receive phone calls etc, all through the implant. Listening with both ears to full stereo now sounds awesome again. I’m now concentrating on listening to music through the implant, initially it was awful but is now improving to the extent I can recognise singers voices and some instruments. 

I am so glad I had the implant after thinking the schwannoma and the radiosurgery would have completely killed my hearing nerve. Hopefully your journey will be a good one as well. 

Hello @Treb, thank you for sharing your story with me, it helps me a lot to know i'm not alone in this. Have a nice day.