Causes of hearing loss

Erin - posted on 01/19/2009 ( 27 moms have responded )

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I was just curious what causes of hearing loss are represented on this board. My children have enlarged vestibular aqueduct syndrome (LVAS, EVA, LVA, etc.) which causes a progressive loss in a step-wise pattern following pressure changes or blows to the head. It is a genetic disorder caused by the recessive gene my husband and I both (unknowingly and unexpectedly) carry.

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Kathryn - posted on 03/15/2013

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This past April I found out my daughter (14) is totally deaf in one ear. She had always complained to me about that ear being clogged up or hurting and I would take her to her doctor and they would say it was absolutely normal...nothing wrong with it. I insisted this past year she be sent to an ear specialist because it was bothering her more and more and it seemed to get stuffy and hurt all the time. Her Ear, Nose, and Throat doctor ordered an MRI and he found that there was no auditory nerve going from her brain to the inner ear. There is nothing. I was told the only way to fix it is to put another one in by way of brain surgery. I am not sure what caused her deafness except a birth defect or an abnormality that happened in the womb. I was given no other clues on that.

My daughter is a talented musician. She is very good in band and she plays the guitar (self taught) and sings. She speaks beautifully and is very intelligent. Her grades are doing well in High School although her grades in math are slipping to a low D. There are problems however, she has trouble hearing unless she is looking at a person directly, but can hear if you raise your voice. She also has a problem with equilibrium and dizziness and just plain being clumsy. This being said I would rather leave her brain alone and just keep her as she is.

My question is: Does anyone else have this nerve problem? Can a cochlear implant work because there is no nerve to connect to? Do any of your children have any balance problems or dizziness issues (especially those who's children are only deaf in one ear)? For those of you who do or have had those hearing nerve issues with your children did you decide on brain surgery to correct the problem or did you let well enough alone?

Kimberly - posted on 04/09/2009

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My daughter has bilateral sensorineural hearing loss also. She was diagnosed at age 4, now 4.5. We think she actually lost her hearing at 3.5. She has a profound loss in her left ear and a severe loss in her right ear. She currently wears hearing aids and will be getting bilateral cochlear implants in May. After her ENT examined her and did a CT, his cause for her loss is genetic. All her bones are correctly formed, no illnesses to cause the loss, nothing. For some reason the hairs of her cochlea are not passing the information along to the nerve.

Susan - posted on 03/24/2009

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My daughter has bi-lateral sensorineural hearing loss. The children's hospital ran all kinds of tests when she was diagnosed at school at age 5. They said the good news is they ruled out all kinds of causes. The bad news is they do not know the cause and have no idea if it will get worse. She is now 12 and it has progressed from mild to moderate. The progression has been off and on with no change some years. She has been wearing hearing aids and using an FM system (assistive listening device) at school since shortly after diagnosis. She has a very strong, friendly personality and has coped very well, but is getting a little more self-conscious as she approaches puberty.

We think it may be genetic, just an unknown gene. My husband has similar hearing loss that was thought to have been caused as a side effect of strong medication used when he suffered an eye injury as a toddler. Both of his parents have hearing loss but they thought his mother's was caused by injury and his father's by industrial accident or sound over-exposure.



We may never know the true cause of her hearing loss. She is the 2nd of 5 siblings and so far no sign of similar hearing loss in any of the others.

Stacy - posted on 07/19/2009

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My daughter has Branchio Oto Renal Syndrome (BOR) is a genetic disorder that includes malformations of the ear and cysts in the neck, hearing loss, and malformations of the kidney. My husband also wears an aid. Only one because the other ear is profoundly deaf, just as my daughters is. I found helpful information on this site http://www.boystownhospital.org/Hearing/... We know now there is a 50/50 chance any future children will also have this as well as their children. Our 1st born does not have the symptoms of this gene, but we have been told by a genetic doctor that she could still be a carrier. I'm glad I've found this site. I know I'm a little late on the post, but I have so much to say!

Cheryl - posted on 02/04/2009

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My son is 2.5 and has bilateral hearing aides.  He has a moderate-severe loss exactly like his dad.  His is genetic.  My husband and his brother both have aides as does his mom and all of her side of the family.  We knew going into pregnancy that we had a 50/50 chance of having a hearing loss or normal hearing (I have normal hearing)...so we were prepared for the news when he didnt even pass his hearing test at the hospital after birth.  We went through about 8 months of tests and such to finally come to the conclusion about where his hearing stood and after the last test in June 07, they found out his levels are almost exact to my husbands...and the good thing is that they got us hearing aides 2 months later and its been the best thing ever since.  Luckily, my husband's loss has stayed the same since his parents found out when he was 5...so I am hoping the same is there for my son and his loss wont change.  I am so fortunate for the technology out there to help him- some people think of it as a burden to have to mess with the hearing aides, but I am so blessed that they can give them to him at such a young age and can determine his loss now, instead of later when he has missed out on so many things...technology is good.

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Melissa - posted on 10/13/2013

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I wonder if I should be concerned by my three year old plugging her ears in the car and cries when she is hearing music and lately keeps telling us to be quiet. Do you think it is possible her hearing is bad.

Romina - posted on 08/24/2013

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My son was diagnosed at birth with a moderate to moderate-severe hearing loss. We did genetic testing and everything came back negative. He is just one of the statistics with unknown origin, but I have 2 theories. first, I went to a club for my friend's birthday when I was 24 weeks pregnant and it was early in the night (cus I was pregnant and not a partier lol) so it was pretty empty, which meant the music was super loud. I once read somewhere that loud noises can cause vibrations in the amniotic fluid which can potentially cause damage to the cochlea hairs. My 2nd theory is, when my son was born, I did not really have to push, he just slide out and because of this the doctor was not in the room because she was doing a C-section. I didn't even know he was out because he wasn't crying. My husband believes he was without oxygen long enough to cause hearing loss, but no medical documentation reports this.

Nicola - posted on 08/05/2013

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Hi I found this site today after being told my 13 year old daughter is deaf in her left ear. She is entering high school in a month, very popular, plays the flute and piano , loves to sing and wants to major in communications. I feel so torn about this. She seems to be dealing with it but, I on the other hand need answers. How and when did this happen. She was a honor student up until her 8th grade year her grades started dropping and teachers started saying she was smart but rude. Like your daughter ,when she mentioned not hearing I thought maybe it was wax build up nothing more. She did have many ear infections as a baby but they were always treated with antibiotics

The doctor has ordered an MRI and recommended hearing aids. She's already complaining about how they will look. She will have to sit in the front of her classes and do her best to protect her good ear. This is very stressful. I just pray the MRI reveals something that may give us a surgical option.

Elizabeth - posted on 01/15/2013

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i just had my 9 year old son tested by audiology, they said he had severe hearing loss, that it had to progress over time, they couldnt even tell me what it was ive been looking all over the innernet for imformation on hearing loss. its to the point where he has to read lips. im still in shock and denial this is happening to my son... im kinda wondering now if its genetic but his father aint in his life, and he wont give me no answers to his family's health history.... im stressed to the max they want him to go to ann arbor to the best doctors to figure this out. he has disabilities he even has bad eye sight, i just dont know where to turn, im just trying to find parents that are going threw the same thing, i can not stop crying over this, it really sucks hes dealing with this...

Fawn - posted on 11/02/2012

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My 6 y/o was just diagnosed with EVA about three weeks ago. She has mild-mod loss L and mild R. She will be getting her hearing aid for her L ear in a few weeks. It has been very heartbreaking for me, but she is coping rather well. I think it takes something like this to make you take a step back from the daily grind and appreciate all you have and how precious and resourceful kids can be!!

Melia - posted on 04/01/2011

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My daughter has bilateral sensorineural hearing loss also. Mild to Moderate hearing. In the spring and fall she has allergies and her hearing is worse. Her loss was discovered at the hospital in newborn screening. No cause known. I did have the flu and was on medicine and didn't know I was pregnant. Alway thought that has something to do with it.

Allie - posted on 12/28/2010

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Hey there..
Both of my girls also have LVAS....it has been a whirlwind of emotion. I have a 13 year old and a 7 year old...we were told that my husband and i each have a gene alone it is fine but connected it creates a deaf child....i would love to chat, compare...or just listen...I am never on this circle of moms, but i am on facebook allie mumma winans...or my email is alycat124@hotmail.com

Amy - posted on 12/28/2010

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my son is 14 months old and was diagnosed at birth with a severe unilateral sensorineural hearing loss. we are currently undergoing tests to find out the cause of it all as there is no history of it on either my side or his dads side of the family.

Sara - posted on 07/30/2009

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My daughter also has LVAS/EVA she was diagnosed at birth and has a moderate bilateral loss. The loss was unilateral until she was about 8 months and then it progressed and is now bilateral.

Julia - posted on 07/23/2009

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My son has a bilateral mild to moderate sensorineural hearing loss. He is 4 and failed the newborn hearing screening at the hospital. We have had genetic testing done for Connexin 26 but that came back negative. We too have done CT Scan - Petrous Temporal Bones and everything is normal. When my older daughter, who also has a mild bilateral sensorineural hearing loss asks us why she and her brother hear differently than everyone else, we tell her "God made you special. Only you can hear the special things He has to tell you."

Traci - posted on 06/04/2009

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My daughter has bi-lateral profound sensorineuoral hearing loss. Her deafness is due to a virus i got when i was pregnant. Cytomegalovirus (CMV). This is a more common virus than people realize, but is little known by the general population. If any of you have unexplained hearing loss, talk to your pediatritian about this. It may give you an explanation to some of your childrens problems.

Mandy - posted on 04/11/2009

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My son has fibrous dysplasia which is a disease where bones enlarge. He was diagnosed when his school did a routine sight and hearing check in Year 1 (he was also found to have poor vision on one side). We were not aware of the sight or hearing problems until then as he was performing very well at school, and had no noticable speech difficulties. He did turn the tv up (but so did his older non-hearing impaired brother!). He was diagnosed with moderate loss in both ears. The loss has remained stable in the 5 years since. He wears hearing aids (when he hasn't misplaced them!!!!). He is almost 10 and doing very well.

Julie - posted on 03/23/2009

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My son got meningitis at age 7 months. Severe loss in both ears. He was diagnosed with the loss at 1 year old and is now 18, getting ready to graduate. He went to School for the Deaf for 7 years, 4 to 11, then went to public school from 12 to 18.

Carman - posted on 03/23/2009

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Quoting Erin:

Causes of hearing loss

I was just curious what causes of hearing loss are represented on this board. My children have enlarged vestibular aqueduct syndrome (LVAS, EVA, LVA, etc.) which causes a progressive loss in a step-wise pattern following pressure changes or blows to the head. It is a genetic disorder caused by the recessive gene my husband and I both (unknowingly and unexpectedly) carry.



My daughter was born 15 weeks early weighing 1 lb, 11 oz.  She spent 5 months in the hospital and 4 of those months on a ventilator.  She developed a yeast infection and had to be treated with a life saving drug where one of the possible side effects was hearing loss.  There were so many factors and knowing wasn't going to correct her hearing so I opted for the doctors to leave it be.  Her hearing loss is congenital.

Cindy - posted on 03/20/2009

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My son, too, has EVAS along with a genetic disease called Pendred's Syndrome.   Your situation sounds very similar to ours.

Melissa - posted on 03/14/2009

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My son has profound sensorineural hearing loss. His too is caused by connexin 26. He recieved bilateral cochlear implants when he turned 1. We will have a 25% chance that the rest our children will be deaf as well.

Bobbi Lynn - posted on 03/12/2009

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Our daughter was born profoundly deaf (bilateral).  We had DNA tests done and she has Connexin26.  It is a recessive gene that my husband and I carry.  We had no clue, we have no history of deafness and have two other daughters that are hearing.  We feel so blessed to have our little one, she is the happiest, best natured baby ever. 

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we have a bi-lateral sensorineural hearing loss. Cause, we believe, is genetic (from what we don't know)  from my side of the family but it affects the girls more than boys. So we have 6 girls possibly 2 more and 2 boys. My hearing loss has been pretty consistent since I was 3. Both of my kids have loss some more hearing since they were babies.

Tamara - posted on 02/15/2009

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my daughter had a heart transplant at 5 weeks of age.  she has bi-lateral  moderate to severe high frequency loss.  we can only attribute it to possible ototoxic drugs she was on during her illness/recovery

Jamilah - posted on 02/07/2009

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My son's hearing loss unknown.. he was diagnosed immediately with hearing loss after birth.. severe/profound loss. Before having CI, we had done CT Scan - Petrous Temporal Bones. Every single things in there perfectly normal. DNA results - none. None in our family. His doing fine with CI on his left ear. Now in mainstreamed school and getting more talkative now.

Tamra - posted on 01/25/2009

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I have been told that Cody's hearing loss is neurological. everything in the ear formed correctly, just the whole signal is not getting to the correct place. He was 3 1/2 when we found out, and now 5. from last year to now his hearing got even worse. he went from 75% loss to 95%. They don't know why and right now we are focusing on getting his Cochlear Implant started.!! finally our first appt is comming up. We can't wait.

Kimber - posted on 01/20/2009

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My son also has EVAS with mondini syndrome (only half a cochleah formed).  Diagnosed at birth with a mild and a moderate loss, now almost 5 years later has progressed into a severe and severe/profound loss.  He still wears aids, and is just at the cusp of possibly getting a CI.

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