Audiologist reprogramming my to my profound hearing loss .

Vorsia

Active Member
IMG_0410.JPG Hey all miss y'all so many new people I have trying to read lots of post .. my guide harpo is doing great my kids are all almost in high school both boys.and my daughter starts middle school soon . Wow time flies by so fast I'm no longer server profound loss anymore I'm profound hearing loss . Now I wear phonak nieda q50 ups questions will the audiologist be able to program with them to this loss.
 
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LoveBlue

Well-Known Member
The Phonak Naidas are power hearing aids. If they don't work for you you many want to consider a cochlear implant, if you qualify (speech discrimination and physically).

I've worn the Naidas for 6 years now. Though my hearing loss is not as bad as yours, my speech discrimination scores have plummeted in the last couple of years. I now qualify for a cochlear implant (with private insurance) and will be getting one in January. Unfortunately, medicare still requires your speech discrimination to be even worse than what the private insurance companies require.
 

Vorsia

Active Member
The Phonak Naidas are power hearing aids. If they don't work for you you many want to consider a cochlear implant, if you qualify (speech discrimination and physically).

I've worn the Naidas for 6 years now. Though my hearing loss is not as bad as yours, my speech discrimination scores have plummeted in the last couple of years. I now qualify for a cochlear implant (with private insurance) and will be getting one in January. Unfortunately, medicare still requires your speech discrimination to be even worse than what the private insurance companies require.
Hey wow I'm not a good candidate because I have myasthenia gravis a neuromuscular condition it's really controlled.. also I have epilepsy so I'm just going to chance complications but anytime in the future.. maybe I will consider is for sure .. that sucks love blue everywhere should approve CI for people who qualify like you .
 

Vorsia

Active Member
The Phonak Naidas are power hearing aids. If they don't work for you you many want to consider a cochlear implant, if you qualify (speech discrimination and physically).

I've worn the Naidas for 6 years now. Though my hearing loss is not as bad as yours, my speech discrimination scores have plummeted in the last couple of years. I now qualify for a cochlear implant (with private insurance) and will be getting one in January. Unfortunately, medicare still requires your speech discrimination to be even worse than what the private insurance companies require.
So this means in January your getting a CI ?
 

Jane B.

Well-Known Member
Yep. I have the surgery Jan 11th and will get activated (turned on) Feb 14th.

Have you decided which brand to have them use? My understanding is that if you use AB (Advanced Bionics) you can use some of the accessories (such as ComPilot) you may already have from your Naidas.
 

Vorsia

Active Member
Ok, got it. Same here due to Usher Syndrome Type 1.

Profoundly deaf since birth and my hearing test was all time worst, over 110.
Good to know Im not the only deafblind here , usher type one . Oh okay I know many DeafBlind with ushers. I'm profoundly deaf progressive from mild now profound my vision loss is from optic atrophy and myasthenia gravis and autoimmune condition.
 

Foxrac

Well-Known Member
Premium Member
Good to know Im not the only deafblind here , usher type one . Oh okay I know many DeafBlind with ushers. I'm profoundly deaf progressive from mild now profound my vision loss is from optic atrophy and myasthenia gravis and autoimmune condition.

Yes, Usher is majority portion of deafblind population. I have 90 degrees with both eyes and great acuity with contact lenses.

Interesting, does could progress into full blindness in later life? Do you have to take steroid medicine everyday?
 

Vorsia

Active Member
True about ushers that grate I know your side vision is gone so you can read print that great . I can't read regular print but zoom text helps a lot .. I can go fully blind one day I hope not I also have nystagmus shaky eyes . I'm on 30 mg prednisone , and monthly infusions called ivig .
 

Foxrac

Well-Known Member
Premium Member
True about ushers that grate I know your side vision is gone so you can read print that great . I can't read regular print but zoom text helps a lot .. I can go fully blind one day I hope not I also have nystagmus shaky eyes . I'm on 30 mg prednisone , and monthly infusions called ivig .

Yes, I know some people with Usher have to use zoom text and larger print, depending on gene mutation. My gene mutation is milder and full blindness is unlikely, but it is possible to be legally blind within decades and my specialist told me that less than 30% people with same gene mutation as mine went legally blind, usually occur in middle aged (over 50). I have cataract, it is early stage and the glare affect me very much. I can't go outside without sunglasses.

The retina surgeries could speed up the Usher's progression, make legally blindness or full blindness sooner, so my doctor advise me to avoid the LASIK.

Oh wow, I learn a new thing about your condition. I remember about prednisone - I had to take one for my colds and sinus infection after I max out the steroid injection. I prefer injection over tablet because it is easier with my stomach. Both works great to silent the immune system and prevent them from attacking like crazy (cause inflammation). I hopefully anyone could find a cure for your condition and Usher.
 

Vorsia

Active Member
So true I pray one day it will happen cure for both of us . I hate pred it makes me have a bad sweet tooth craving sugar that's what I don't like .yeah but I still love to bake all the time and yup you don't want to more surgery and mess up your vision more .
 

Foxrac

Well-Known Member
Premium Member
So true I pray one day it will happen cure for both of us . I hate pred it makes me have a bad sweet tooth craving sugar that's what I don't like .yeah but I still love to bake all the time and yup you don't want to more surgery and mess up your vision more .

Oh wow, I love to eat a lot of sugary foods. They tastes great.

I noticed that taste buds are getting less when you are getting older. :(
 
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