Ellie was diagnosed with Auditory Neuropathy when she was about 4 years old and every year she has a hearing test to check that her good ear is still good and that her bad ear is still bad. She is totally deaf in her right ear but has amazing hearing in her left.
In 2020 we didn't have the greatest appointment at the hospital, he was a stand in doctor so at the appointment in the middle of December I was expecting another new doctor and that is what we got. I would like to say he was a massive improvement on the previous doctor but he wasn't. He got off to a bad start reading the notes on his computer about a different person and started talking about cochlear implants. The nurse put him right and he apologised. I just rolled my eyes and thought here we go.
The doctor was so arrogant questioning why Ellie hasn't got hearing aids, we have always been told that hearing aids wouldn't work and why she has never had a MRI scan? We said no to it when she was little as she was recovering from heart surgery and then when she was older the doctors have said they only want to do it for their own research and nothing would benefit Ellie. It makes you feel pretty crap when doctors are questioning things without actually realising what Ellie has been through in her life. I am thinking that the training doctors get in bedside manner is given to the nurses and assistants as they are always amazing and the doctors are arrogant, rude and have no people skills.
The doctor mentioned a type of hearing aid which wouldn't need surgery and Ellie and I got interested. CROS hearing aids are designed for people with hearing loss in one ear like Ellie has. These are made up of a conventional hearing aid that sits in the hearing ear and a microphone that looks like a hearing aid which sits in the ear with no hearing. The hearing aids pick up sound from the side with no hearing and feeds it into the hearing ear.
The doctor was asking me if I thought this type of hearing aid was a good idea and would Ellie like to give them a try? I said yes, it sounds like a great idea but it's not up to me to decide for Ellie, it's her body, her choice. Ellie didn't look convinced by what the doctor was saying but the nurse told us more about them and how they come in most colours that you could want and you could even get them to match your hair colour so they are not noticeable. The doctor said that if she feels self conscious about the hearing aids she doesn't have to wear them at school which I thought was a bit stupid as that would be where she would get the most benefit. Ugh. Ellie ended up agreeing to give them a try, she has nothing to lose apart from a couple of afternoons at school.
The doctor did say that he would like to give Ellie a MRI scan to investigate more about her hearing loss and as she is at an age now she won't need knocking out or sedating and it could be done at the same time when she gets fitted for her hearing aids which we have agreed to, well Ellie did. She loves all things medical and said she can't wait for the scan.
I don't understand why this type of hearing aid hasn't been offered to Ellie before? All the previous doctors have either said nothing can be done to help or she would need hearing aids involving surgery. It's frustrating that Ellie has got to 14 years old and she just seems to be getting the help that she needs.
We haven't had long to wait to get an appointment for Ellie's MRI scan, she has it on Saturday. I am dreading it but she is looking forward to it, she loves anything to do with hospitals.
My son enjoyed his MRI scan and thought it was so cool. I hope the hearing aids work and that she's willing to wear them.
ReplyDeleteI can totally understand how frustrating it must be to have waited this long to get help. At least things are moving in the right direction now. Ellie must be super excited. xx
ReplyDeleteHope the scan has gone well Kim. I really need to get my ears sorted out too. So pleased she's finally got some help for her hearing
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