My daugter is 17 yrs old and is losing her hearing gradually!!!
Ever since she was little as 2 yrs old or so she has had to have tubes placed in her ears due to repeated ear infections. At the age of 11 we were sent to a ENT who advised us that she had more than just simple chronic ear infections, she has Chronic Eustachian Tube Dysfunction and mild cholesteatoma.
At that time they would need to do a "reconstruct" of the left ear, (for it is in the worst condition of the two ears). They would also be placing yet another tube. Now she has had approx. 30+ tubes and 2 complete reconstructs to the left ear and to the right as well.
In June of this year, we were told by her ENT that there really is nothing that can be done for Breanna's "disease". She is in a "rare 1% group" of people who progress for the worse rather than get better. They can continue to do reconstruct surgeries and tubes, etc. but this will not give a cure or fix to the problem. He has said that he is just basically able to do "maintenance" on her ears.
Now she is thinking, why do anymore when it is obviously not going to change the end result of hearing loss. My daughter is on a state insurance program, but to continue this program for her care, she would have to be recognized by the Social Security Admin. as someone with a disability. But they won't give a final determination as long as her ENT continues to provide "maintenance" care for her. So she will lose her state insurance.
I am so frustrated and well very angry for her situation. She lives with this struggle daily. Her hearing right now fluctuates, somedays are better than others, but the surgeries are coming more often cause the procedures are not holding.
My heart breaks knowing that she is losing her ability to hear, but I know she is so strong and will do well in life in spite of it. I just simply don't know what to do. How do I not let them at least give what care they can to her to atleast keep some relief from the pain. If anyone can advise me as to what is best to do, I would appreciate it.
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