anyone else have problems after ear tub surgery with hearing

Jennifer - posted on 10/12/2009 ( 10 moms have responded )

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just wondered if there was any other people out ther that had a child get tubes and go from a mild hearing loss to severe the same day and never improve i don't know if it was the surger or genetics (we are currently haveing that theory tested but no gaurntees for an answere my son does have a rare chromosome 18 disorder so it could be related to that i just think it is odd that a child with a mild hearing loss goes in for tubes tonsil and adnoids and comes out with a sever hearing loss the same day the dr told me it was due to inflamation and 2 weeks it would be better 2 weeks later and still nothing here we are a year later and still the same he now has hearing aids in both ears the drs said there is no possible way the surger had anything to do with it but i am not so sure i am thinking maybe since his chromosome disorder can make him have narrow ear canals which he does have that maybe it affected how his ear bones are placed and maybe since we didn't know about this before surgery maybe things just weren't in the normal place and when he had surgery something got disrupted just a thought i just wanted to see what other moms thought about this thanks

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Jennifer - posted on 10/27/2009

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UPDATE!-- went to the ENT today he now needs to go back for surgery to remove his ear tubes and ear wax the ear wax is so hard they have to put him under to get it out it has completely plugged the tubes so they are doing no good and is attached to his eardrum to boot also since he has had so many ear infections since the tubes were put in they are afraid that there has been some scarring around them and they may not heal properly on their own so they want to put a thin layer of skin cells over the opening to help seal up the holes and help it heal properly hopefully this will help him once they are out

Jennifer - posted on 10/27/2009

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actually that did help a lot i do feel his facial structure may have something to do with the way his ears are "put together" so to speak he has been to a neuruloplogist but for a different reason his facial tics which are still unexplaind unless it is part of his chromosome disorder which we are still waiting for those test results

Faith - posted on 10/19/2009

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Yes, My son was born with Pierre Robin Syndrome and he has had 4 sets of tubes..NONE helped his hearing or the infection's.



Once all medicines stopped working, we were faced with seeing a Neurotologist. This man made my son's world change. It required an operation on each ear called a Tympnomastiodectomy. My son too had narrow ear canals due to the cranio facial part of the disorder



This was all back in 2003, now in 2009...he just had his 10th cleft clinic and the hearing test came back NORMAL.



I hope you have a Neurotologist in your area, because no ENT can do this to correct the hearing.



I hope this helped a little bit.

Kristy - posted on 10/18/2009

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I believe you need to seek a secondary opinion. My daughter use to have clogged ears ALLLL the time, until the tubes got put in. We havent had a earache since she was 4 years old. We use to have all kinds of medicines that we've tried over and over and over again and nothing seemed to help. So I went ahead and put the tubes in and like I said no earaches nor inflammation of the ears what so ever for the past 3 years. Check with another peds or another ent. I went through 4 before I made my decision, bc again you never know with human parts that cannot be replaced.

Jennifer - posted on 10/16/2009

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well at least i know i am not alone in this it jsut struck me a weird that it happened the same day my guess is that he had the problem and either the release of pressure did something or helped it show up or maybe it was as the one lady said the inflamation that triggered the genetic issues to come to the fore front i amy never know i just have to make the decision as to wether or not to get tubes in y dd's ears she also has symptoms of this chromosome disorder and also has 20%loss right now due to fluid but she has not as of yet been diagnosed with the disorder i have been trying clariton hopeing it will dry the fluid up so we won't have to dfo the surgery i jsut am having a hard time agreeing to have this done i am so worried she will end up the same as her older brother what would you guys do ?

Kristy - posted on 10/16/2009

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The tubes are there to release the pressure so therefore not causing more ear infections. My daughter is hearing impaired as well, she has been since the day she was born, and we were lucky to catch it head on. She had tubes put in at the age of 4 and they have fallen out ,she's 7 now. There is a possiblity that when the pressure got released it did cause from mild to severe hearing loss. My daughter was born with moderate to severe hearing loss, I feel your pain

Wendy - posted on 10/15/2009

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my daughter has the same issue....after so many sets of tubes and repeated bad ear infections i demanded the ear tubes to be taken out! They were originally put in because my daughter has small ear canals and the wax builds up like crazy...also hearing loss and speech delay...but i feel the ear tubes only make matters worse from our experience.

Jennifer - posted on 10/13/2009

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thanks to both of you i am not trying to necessarily blame the dr that did the tubes i am just looking for answeres i do think it is most likely due to the chromosome disorder but it was the timing that made me wonder he did have a hearing test at the hospital shortly after birth which he failed then passed at 2 weeks the audiologist chalked it up to having narrow ear canals which now i know is possibly part of his disorder so for several years i didn't really think too much till his language wasn;t wuite right he had a big vocab but couldn't pronounce the words correctly at that point he was also banging his head rythmically on any hard object i got involved with the early interventions got into therepy for him speech and pt and ot which helped they said he had sensory problems and was banging his head for sensory input and he was always drooling so we then chalked the speech up having low muscle tone in the mouth but he only improved with the drooling not much in the language which promted me to think it was his ears thats when we started doing tests on his ears and didn't find anythin wrong till last year at wich time we did the tubes tonsils and adniods for the fluid build up he never really had a lot of ear infections though the dr said he has sensory neuro in one ear and mixed in the other so i do doubt it was the surgery i am just exploring all options i can think of so i can stop worring that i made the wrong decison and make a decison to either do tubes for my daughter or to avoid doing them for her for longer hopeing it will go away on its own i am now just nervous after what i ent through with my oldest son as far a s what to expect with heraing aids i am now getting to be a pro with them depends on what kind the child has and how old they are my son has widex he has the silicone earmolds and he has never complained about them being uncomfortable when he first gott them everything was too loud for him only because he had never heard most of those sound before i think he got used to them in less than a week i don't know how old your child is but when they reach school age they have this wonderful technology they can use to get rid of background noise called an fm system the kid weras the hearing aid witha tiny boot attached to the battery compartment of the hearing aids and the teacher weras a microphonne and can then talk directly to the child without the confusion of all the other noises in the room very helpful since my son likes to walk by himself down the hall at school he dosn't like to be walked by his aide anymore but she can say his name and he spins around like she tapped him on the shoulder if you have any questions you can feel free to ask me i will do my best to help you best advice keep them dry and be preparded to explain their use and how to care for them to anybody that will be careing for your child at least a dozen times all his teachers were so scared to tuch them i had to go to his classroom over a dozen times to show them how befoer they got comfortable with them good luck i think you will be amazed at how much they help

Dawn - posted on 10/13/2009

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I just posted pretty much the same story on another conversation, but my son also has a chromosome disorder (partial trisomy 11 with unbalanced translocation and microdeletion 5p). He had an ABR as a baby which was fine. Somewhere along the way his hearing declined. We think it was somewhere between age 2 1/2 and age 3, because that is when he lost language skills. His ENT at Mass Eye and Ear in Boston (who should know better) said there was no way the chronic ear infections would cause "significant loss" so he would not order a new ABR even though I asked. Finally, a month ago, the new ENT at Boston Childrens ordered a new ABR and we found out Conor is 60% impaired. He got new tubes at the same time since his tubes had fallen out and the audiologist said there was so much fluid and pressure that he was probably 80% impaired before the new tubes were placed. No wonder the poor kid is having trouble learning. He's getting his hearing aids on Friday.

Sorry about the rambling. About your question: Did the audiologist tell you whether the hearing loss is mechanical (the bones don't conduct sound right) or sensory-neuro (the cochlea and/or the nerve isn't working right)? That might make a difference as to whether the ear tube surgery could have caused a problem.

Also, Conor's audiologist said it is "not uncommon" for kids with chromosome disorders to have progressive hearing loss where either it gets worse and plateaus or gets worse and keeps getting worse over time. So, it might be that your child would have been susceptible to losing more hearing anyway and either the timing was a coincidence or the inflammation triggered something that was going to happen eventually. Not that that would make you feel better, but it is a possible explanation.

Since you've been through this, anything you can tell me about what I should expect with the new hearing aids?

Ann Marie - posted on 10/13/2009

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Jennifer,



Based on what my ENT told me, where the tube is placed should not have affected his hearing in that manner. He said:



Inflammation would explain the immediate hearing loss even in a child who had no hearing loss before. The prolonged loss is not explained by the tubes, but may suggest the tubes were not as effective as they should have been, and the original condition requiring the tubes still exists. Without knowing the dx for the chromosome disorder, he did not want to make any guesses.



If you give me some more information, I would be glad to ask for more help.



Ann Marie

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