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Do you have a hearing problem?

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From the lens Otosclerosis - a disease of the middle ear.

Are you one of the one in six people who have a hearing problem? Do you have Otosclerosis? Or do you know someone who has? Leave a message - I would love to hear from you - oops, did I just say that!

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otosclerosis

  • kjanzd May 16, 2012 @ 10:04 am | delete
    I am 33 and after being on antibotics for 4 of the last 6 months for sinus infection/ear infection, I finally asked to see an ENT. Yesterday, I had a CT scan of my head which came back completely normal. There was no fluid in my ears or sinuses. I mentioned the stuffy and ringing ear and he said we would look at that. He inspected my ear and mentioned my eardrum looked beat up. I have had sooo many ear infections growing up that I associated this to that. My left eardrum has ruptured twice and I've had tubes in my ears twice as a child. He sent me to get a hearing test and my right ear is good but not great but my left ear is only at about 50%. He then decided that since I was in the office he would cut a slit in my eardrum to make sure there was no fluid in there..I prayed there was and that a tube would fix it. There was no fluid. To me, I only noticed all my symptoms within the last few wks when I supposedly had this ear infection: stuffy ear, random pain in ear, ringing noise (really weird background noise), nausea, and loss of balance. The only time I feel half normal is when I'm laying down. So, due to being "sick" I rested alot. The doctor diagnosed me with otosclerosis. He says he gets about 2-4 people in his office a year with it. Next week, I go back to him to make sure my eardrum is healed and talk more about where I would have to go to see a specialist. I live in North Dakota-probably 9-10 hours from the nearest specialist. He mentioned hearing aid and surgery. The more I read the more confused I get...It's supposedly hereditary when no one in my family has had this. Hearing aids help now but as the hearing loss progresses may not help in the future. I'm scared because this generally ends up happening to both ears. I feel very alone and scared. Is the pain I feel in that ear nomal? Is the surgery worth it? Will the ringing stop? I have three young kids and can hardly hear them...Can anyone relate to this? Any input? Thanks for any and all input you have as this is rare and no one here understands what I'm going through! This is my story!
  • aj2008 May 17, 2012 @ 8:42 am | delete
    To get a diagnosis like Otosclerosis is quite a shock isn't it? Especially when you start reading up about it. All I can do is tell you what it has been like for me since i was diagnosed nearly 4 years ago and I hope you will be reassured.

    I am fortunate that I only have it in one ear, but when the symptoms hit they were very unpleasant and yes, my life has been impacted because of it. However, the brain is a wonderful thing and what seems to have happened to me is that it has readjusted itself, so that although I do still get symptoms, they are not as bad as they were. Of course my hearing in that ear will never improve, but if it has worsened then I have not noticed it.

    As for the ringing in the ears, yes I do get tinnitus sometimes but it is not all the time. I dont get any pain, but if your Doctor actually cut your eardrum then I am not surprised you are in pain.

    Because I still have normal hearing in one ear, I am not considering surgery and as for Otosclerosis being hereditary - my understanding is that it can be herdeitary but just because you have it, does not mean that anyone else in your family has had it.

    I do wear my hearing aid sometimes - my daughter was in a show a few weeks back and I knew I would struggle to hear some of the children, but most of the time I do without it.

    The thing is that the way Otosclerosis affects us can be different for each person and my advice to you would be to see a specialist who deals with this all the time. And you never know, it may be the damage to the eardrum that is causing your symptoms and not be Otosclerosis at all.

    I wish you well and hope you get the answers you need soon :)
  • Ajay Apr 11, 2012 @ 8:12 pm | delete
    Hello AJ,

    What a coincident, my name is Ajay and I use AJ abbreviation many times. I am also Otosclerosis patient.

    One more interesting thing is that my journey towards discovering this disease in me is almost at the same period (I was 1 year later than you) and in the same country UK.

    When I was reading your lens I felt I was reading my own story.

    However I should admit that my condition is not reached to the stage where one cannot balance while walking, may be because I am just 32 years old.

    After having number of hearing tests in UK and India finally doctors told me that I am suffering from Otosclerosis. It is in my left ear.

    I would like to bring some interesting aspects from my personal experience mainly which have not been touched in this lens, which may help other peoples suffering from the same symptoms or you may also shed some light on these aspects:

    The first thing I suffer a lot from is that, I get lot of irritation from the sounds around me. I cannot resist sound of door closing, people talking in a loud noise, Night club is too much for me I started avoiding them long time.

    I always used my left ear for talking over mobile. I was wondering how people use right hand while talking on the mobile. The Otosclerosis in the left ear has forced me to use right ear and now I wonder otherwise !

    When I talk a lot (mat be in total 1-1.2 hours) on the telephone (of course on the right ear) but that causes lot of headache for me. It becomes normal again when I take sufficient sleep in the night (8 hours)

    The most important thing I notice in my case is that I can hear some crack noise from my left ear. It is similar noise when you notice from the bonnet of your car when something is not perfect in the machinery. This clearly tells me that definitely something has gone wrong in the ear bones.

    Finally I should confess that I feel shy to use hearing aids to my age. I will give a try to operate it this ear. Do you have any recommendation (any surgeon) in the UK who has handled many cases successfully in this area?

    Thanks for putting such a fantastic lens.

    Regards,
    Ajay
  • aj2008 Apr 16, 2012 @ 12:32 pm | delete
    Thank you for taking the time to share your story. I know what you mean about Nightclubs being too loud - I hate those places too :)

    And I can understand how you feel about wearing a hearing aid - I have to admit that I rarely wear mine, but I think I am going to have to start getting used to it soon - I find myself speaking very loudly sometimes :)

    I have no experience of any surgeons, so I am unable to make any recommendations. But here in the UK you do have the right to be referred to any Surgeon you wish, under the National Health Service, so if I was considering surgery I would go back to the Neurological Hospital in London.
  • Andyanna Mar 25, 2012 @ 9:57 am | delete
    Hi - not really a comment but a couple of questions. I was wondering if otosclerosis can be diagnosed from an MRI of the brain and ears alone/balance tests? Also does the condition go hand in hand with balance problems or can you just suffer deafness? Thankyou.
  • aj2008 Mar 26, 2012 @ 5:09 am | delete
    Well from my own experience it was the combination of the MRI scan, which confirmed the absence of a tumour, plus a CAT scan, that again confirmed nothing sinister plus the balance tests conducted at a Neurology Center, that confirmed the diagnosis.

    To be honest I cannot see any specialist making a diagnosis based on either a brain scan or balance tests. They need to do both, because sadly the sorts of symptoms that I had can also indicate a tumour - and this actually happened to a friend of mine. She had the same symptoms as me, but it turned out she had a tumour and ended up having serious brain surgery. I am glad to say she recovered.

    I do not know if you can just suffer hearing loss without the balance problems developing eventually.

    I my case I ignored my hearing loss for a long time. Then I started being aware of the balance problems a few years later. However, when I think back, I was being clumsy for a long time before I knew something was not right. I was also struggling with other things, like finding it hard to play tennis because at times I would have a sensation that I was going to fall over if I really slogged the ball hard.

    I also wrecked the side of our car, just turning left into our driveway. I completely misjudged it and collided with the brick wall. At the time I thought it was just me not concentrating properly but now I think it is because it is my left side that is affected the most.

    the main thing to do, is if you have any symptoms, whether it be hearing loss, co-ordination problems, dizziness, then you MUST seek specialist help, because it is only a specialist who can make a correct diagnosis.
  • Amkatee Feb 19, 2012 @ 5:15 pm | delete
    We are still waiting to rule out otosclerosis in my 7 year old. She has reverse slope hearing loss in both ears. I have been told that if it is otosclerosis then it should be monitored. If it reaches the cochlea it will eventually cause complete hearing loss and that a CI should be implanted before that happens. You can find out more on a facebook group. The leader on there is so full of knowledge!! Message me if you want the info.
  • aj2008 Feb 20, 2012 @ 9:15 am | delete
    I am sorry to hear about your daughter's hearing difficulties. It's even harder when it is a child isn't it?
  • CDL Feb 19, 2012 @ 3:33 pm | delete
    Hi, I had surgery 22 years ago in my right ear for Otosclerosis and will have surgery in my left ear in the next few weeks. I had great sucess with my first surgery and am praying for great results with my next surgery. My grandmother and two of my cousins were also diagnosed with Otosclerosis. One cousin had great success with the surgery and one cousin found the surgery didn't help. I was given the option of getting a hearing aid, but chose the surgery, as I haven't met anyone that has been satisfied with their hearing aid. The noises they make/cause would drive my crazy. Good luck in your journey.
  • aj2008 Feb 20, 2012 @ 9:16 am | delete
    I hope everything goes well for you and thank you for stopping by and sharing your story :)
  • WaynesWorld Nov 9, 2011 @ 6:16 pm | delete
    I don't have this disease, I drove a semi that had a 318 Detroit motor with exhaust pipes right by the door of the cab, no A/C so the window was down much of the time. These were known for their deafening noise, I think it affected some of my hearing.

    Your lens is a work of art, anyone wanting to know how to design a great lens should stop by and take notes. Thank you.
  • amira mohamady Nov 7, 2011 @ 2:02 pm | delete
    i have otosclerosis also 18 year ago ,it was stable then 3years ago it became worse ,i have also eustakian tube dysfunction that exacerbate the condition .vertigo is rarely to occur and no problem in the balance but i have episodes of something like auditory agnosia that last for few seconds i am in need of any hope for correction of my hearing as i started to suffer from loss of confidence and anxity it affects my work as i am a doctor.
  • Melanie Rounds Oct 26, 2011 @ 2:51 pm | delete
    Thank you for your post. The information was the best I have found Yet. My 4 year old daughter was just diagnosed today with Otoschlerosis. Of course I am trying to keep it together until shes in bed. Her hearing was only an issue in the left year as of last year and found it is now in both ears and worse. I am yet to find any information on children for all I have found is it is rear to get it under 15. Your story is definatly food for thought and will help in many ways to decide what we should do as parents or wait and let her decide when she is older. I will keep you in my prayers and hope you get better and better. Again Thank you very much I appreciate you and your story greatly.
  • aj2008 Oct 27, 2011 @ 1:52 pm | delete
    Melanie, I am so sorry to hear that your little girl has Otosclerosis. You certainly have a lot to think about and probably have to give a lot of thought to how best to help her.

    I would very much appreciate your returning here and letting us know what treatment your daughter has and how she is getting on.
  • LaraineRose Oct 15, 2011 @ 5:49 am | delete
    I just read your lens on APD and seeing the reference to this lens just had to read it too. I have a very bad case of Tinnitus - have a lot of tests and have another appointment with a specialist on oct.26th. I will discuss the possibility of my having Otosclerosis with him. Thank you for your thorough discussion on this hearing problem. The YouTube on the operation was very interesting. I hope I never need the operation but if I do, I will know what to expect. SquidAngel Blessing.
  • Ni5i Sep 12, 2011 @ 4:37 am | delete
    Hi there, very sorry to hear about your otosclerosis and your history. What a journey you are on, it must just be one day at a time. Thank you for yur insights which have parallels with my own symptoms and makes me link these back to the progress of this potential condition for me. Will check in with you again so keep up the great writing, as I will want to know what happens to you...
  • CruiseReady Jul 1, 2011 @ 10:49 am | delete
    I had never known much at all about thi before. This was quite enlightening, and I am glad you are finding ways to cope and travel. The dated diary like entries were of particular interest.
  • monkeyDluffy24 Mar 30, 2011 @ 1:36 am | delete
    I’ve had ongoing problems with fluctuations with my hearing for almost a year. I found your explanation quite helpful. You may want to pop by my blog to read of my experiences (starting Jan 2010) and what efforts I have made to determine what is wrong. It has been a year long project!

    best hearing aid Merrimac Ma
  • CHalloran Feb 6, 2011 @ 8:05 pm | delete
    Very interesting article. I love reading about things like this.
  • gobbleupinfo Jan 15, 2011 @ 9:32 pm | delete
    Wow! You're quite a lady. This lens, especially the journal, should be required reading for folks--whether or not they're dealing with deafness. Folks with chronic conditions (and I have one of my own) can't help but be encouraged by your "go get 'em" attitude. Hang in there girl and best of luck.
  • darciefrench Oct 27, 2010 @ 10:26 am | delete
    Dear AJ, I really felt for you reading this lens. I understand all about the exhaustion and what that means having a family to care for. It can be so debilitating. Glad you are hanging in there. Much love to you.
  • Susan52 Oct 21, 2010 @ 5:49 pm | delete
    Just stopped by to catch up and to leave you a SquidAngel blessing for sharing your story for the benefit of others. Blessed!
  • debnet Oct 11, 2010 @ 5:10 am | delete
    Wow, I just reread this through 'different eyes'. Is this what I have I'm asking myself? I'm amazed you went to a supermarket by yourself... brave girl! I've even given up going into the garden as the last time i did I ended up in a flowerbed!!
  • kab Sep 20, 2010 @ 8:36 am | delete
    This lens is being featured today on The Squid Calendar.
  • Tipi Aug 27, 2010 @ 1:55 pm | delete
    Wow lady, this is educational. I hadn't heard of octosclerosis. I was just visiting your bio-page and saw this link to an illness, and want to see what its about. Well Done!
  • LoKackl Aug 1, 2010 @ 7:43 am | delete
    So sorry you have had to go through such an ordeal in having and identifying this health problem. I'm sure many people will benefit from your story. Blessed.
  • Ellen J Jul 6, 2010 @ 11:48 pm | delete
    reading about Otsclerosis has helped me realise I'm not going crazy, I have suffered severe headaches for so long, bending over and stress always triggers my headaches. I have tried to alter my diet and see if it was a food alergy but now realise it's part of the symptoms. Reading through the diary entries has somewhat alieviated my worrying. Thankyou.
  • paperfacets May 20, 2010 @ 2:29 pm | delete
    Excellent lens and story/info presentation! A sign of one channel of recovery is the beautiful new avatar. It is so balanced too with the three views or divisions.
  • Ladyclodine May 18, 2010 @ 4:15 am | delete
    The review is very informative. I'll surely recommend this site to my friends who tried several digital hearing aids but not working properly. Maybe this article can give them information they might need.
  • Ladyclodine May 18, 2010 @ 4:07 am | delete
    I never thought i have a hearing disability in one ear until i have read the article and went for a check up, it's a mild case but my doctor advised me to use digital hearing aids while i'm under medication.
  • Spook Nov 19, 2009 @ 3:20 am | delete
    I do believe I have a hearing problem as well and my balance gets worse all the time. Blessed by an Angel.
  • MiaBellezza Oct 17, 2009 @ 7:41 pm | delete
    I have tinnitus and have been taking more vitamins which seem to reduce the ringing (particularly the B Vitamins and Zinc). I also have had an extremely hard time hearing people talk when in a room where music is playing, however this has been all my adult life. Your lens has been very informative and I can see you put a lot of work into it.
  • aj2008 Oct 7, 2009 @ 12:36 pm | in reply to Tracy | delete
    While hearing in crowded places may be difficult for you and your Dad Tracy, my research has turned up several scientific papers that state that some people with Otosclerosis also have Paracusis. In these instances, some sufferers can hear better in crowded places.

    I certainly agree with you about the clumsiness though!
  • Tracy Oct 7, 2009 @ 12:23 pm | delete
    This is a great website - but there is an error. You state that people with otosclerosis hear BETTER when there is background noise (e.g. in a pub) but the opposite is true - our hearing significantly decreases in these situations. I'm useless in a pub environment and so is my dad, who also suffers from this! But thanks for the "famous people" section - I had no idea I had this in common with so many famous people. :)

    My ear doctor tells me balance and clumsiness aren't related, but I believe they are because it seems those that have this disorder also have those problems.
  • aj2008 Sep 13, 2009 @ 12:16 pm | in reply to Photahsiamirabel | delete
    Thank you for leaving a comment. You can vote for this lens in the plexo list just above.

    I am involved in musical theatre and I sometimes wonder if what I can hear when I am speaking or singing is very different to what other people are hearing. I so far have only partial hearing loss in one ear but I do wonder if it distorts things when I listen to "me"!!
  • Photahsiamirabel Sep 13, 2009 @ 4:57 am | delete
    To me, as a musician, my hearing is the feedback I need to know if I have communicated correctly what is inside my head. I had some middle ear problems causing dizziness and tinnitis for a while - that scared me. Deafness is one of the most difficult conditions causing social problems for sufferers. I commend this lens but how do I vote? 5* favourite.
  • aj2008 Aug 22, 2009 @ 4:51 am | in reply to Georgina | delete
    I wish Georgina was contactable as I would be able to tell her that I get the most amazing musical tinnitus whenever I am involved in a musical. It happens when I am sitting quietly in my home office working on the computer! If only I could compose music - I would be able to produce some very original tunes!!
  • Georgina Aug 18, 2009 @ 11:23 pm | delete
    I am sorry to hear of the challenges you are facing but I am so glad that I came across your blog. I was diagnosed with otosclerosis soon after turning 30 after thinking that the left speaker in my car was dying...it actually was the stapes in my left ear. The tinitus I've had all my life is increasingly getting worse (ever heard of a 60 piece orchestra comprising trumpets and jet engines?). Your blog has given me hope in terms of adapting! Most of what you described (excepting the vertigo) is what I am experiencing and I was glad to read that I am not the only one. The information you have provided is really helpful. I wish you all the best for you and your children. Take comfort in knowing you are not alone...
  • puzzlemaker Aug 15, 2009 @ 9:09 pm | delete
    "...but because I have stopped doing certain things, my anxiety about the problems will actually make the problems happen." AJ, I've suspected this about issues in life and it brings me comfort to read your thoughts about it. I sincerely hope things continue to improve for you with 2 steps forward, no steps back.
  • AndyPo Aug 13, 2009 @ 4:32 pm | delete
    Excellent lens. Very interesting and useful information. Sorry to hear about your hearing loss.
  • sittonbull Jul 16, 2009 @ 10:57 am | delete
    AJ, I am very empathetic per your symptoms and at least from the male perspective understand part of what your are experiencing. I was diagnosed with Menaire's disease after experiencing sudden hearing loss in my early 30's. I initially experienced the accompanying sessions of severe vertigo and nausea (about 5 while attending public functions) and in my case there just wasn't any way not to feel miserably disoriented like my mind was spinning apart during those sessions. I remember being shocked to learn that there are people who suffer vertigo every day and that seems incomprehensible. Thankfully I rarely experience vertigo or nausea today, but my hearing is awfully limited even with a hearing aid. I later was diagnosed with nerve damage with contributing factors of genetic, artillery, loud music and hunting w/left ear totally gone and 35% hearing in right ear. I pray you can find the correct solution to make your condition more tenable. Keep the faith! Great lens!
  • a_willow Jun 26, 2009 @ 3:49 pm | delete
    Terrific lens! So packed up with informations! Well done AJ! Blessed!
  • JaguarJulie Jun 7, 2009 @ 9:13 am | delete
    You know, I had to drop back by to see what more I could learn about this -- see if there was anything that could help me understand what is happening to our dear Pug the cat. Her vestibular disease -- if that is what she has -- has wreaked havoc on ALL her daily movements. She is so terribly miserable. We are doing everything we can to calm and reassure her that she is safe in our care. But, she can't stand or walk without losing her balance. It looks like her whole world is spinning.
  • davidstillwagon Jun 5, 2009 @ 3:54 pm | delete
    I have meniere's disease so I know how difficult it is to deal with ear and hearing problems.
    great lens I'll give it a 5
  • speechsrl Jan 4, 2009 @ 11:33 am | delete
    AJ! You've written a wonderful lens on Otosclerosis! I'm sorry for the challenges you are having to deal with -- both with your own and your children's hearing loss issues! You are fabulous for writing about your personal journey, and I hope and pray that you will have success in finding ways to manage...if not cure...your and your children's hearing loss!
  • CherylK Dec 30, 2008 @ 3:27 pm | delete
    Wow...what an eye-opening lens! This is such important information. I'm just sorry you had to go through such an experience. Thanks for putting it all in a very readable format. And congrats on the LOTD, too. Well deserved. *****
  • spirituality Dec 30, 2008 @ 10:55 am | delete
    Interesting. I'd be interested to hear whether the physiotherapy keeps giving you improvement or if there is some sort of plateau.
  • spirituality Dec 30, 2008 @ 10:55 am | delete
    Interesting. I'd be interested to hear whether the physiotherapy keeps giving you improvement or if there is some sort of plateau.
  • inkserotica Dec 18, 2008 @ 5:04 am | delete
    I finally managed to get myself over here! You're a very brave and strong lady and I wish you luck with dealing with this condition. Let me know when you're in London next so I can give you a hug ;) 5*
  • GrowWear Dec 16, 2008 @ 3:40 pm | delete
    AJ, that's tough. You are one strong woman dealing with all of that. I wish you and your family well.
  • seedplanter Dec 16, 2008 @ 10:20 am | delete
    AJ, this is an insightful lens. When I first read about Otosclerosis, I thought it sounded like Meniere's Disease. I wonder what the difference is? It is neurological also, and affects both balance and hearing.

    You've created a lens that is bound to help others. Thank you.
  • Stazjia Dec 16, 2008 @ 9:26 am | delete
    I really feel for you. I've had occasional attacks of extreme vertigo from time to time which made me vomit if I moved at all so having it combined with deafness and other problems must be excruciating. I think you're very brave to write about it so clearly. I hope the cognitive behavioural therapy helps you.
  • Samantha Dec 15, 2008 @ 5:55 am | delete
    Fair enough, must be a different presentation of Otosclerosis than the one that runs heavily in my family. Good luck, I know dizzyness can be dibilitating.
  • aj2008 Dec 14, 2008 @ 8:08 am | in reply to Samantha | delete
    Yes, the diagnosis was Otosclerosis. The diagnosis was made by specialists at Neurological hospital in London, which has the reputation of being one of the best in the UK.
  • Samantha Dec 14, 2008 @ 7:06 am | delete
    Are you sure your diagnosis was Otosclerosis? Otosclerosis causes a conductive or later a mixed hearing loss (a gap between th air conduction thresholds and the bone conduction thresholds, the audiogram posted has a pure sensorineural hearing loss. As otosclerosis is a fixation of the stapes bone in the middle ear it results in the transmission of sound to be restricted resulting in a conductive hearing loss. Also a stapedectomy can only resolve the conductive component to the hearing loss it would only be recommended if you have a significant conductive hearing loss. I do not doubt the dibilitating nature of you balance symptoms but I am not sure otosclerosis is the cause.
  • dc64 Dec 12, 2008 @ 12:59 pm | delete
    I would hate to lose my hearing, but you seem to be facing this challenge head on. I hope and pray for nothing but the best for you and your children. You've done a great job on this lens, by the way.
  • Spook Dec 11, 2008 @ 8:00 am | delete
    I know what you are going through, so just want to say be persistent and persevere and above all try to keep your spirits up. If it comes to the worst ( God forbid ) it's not the end of the world. By the way I admire your courage. Keep it up.
  • Ener-G Dec 1, 2008 @ 2:14 pm | delete
    Hi AJ,
    My son has a severe hearing impairment in one ear, so I am slightly familiar with what you are going through. It takes a great deal of courage to deal with it all. Give yourself permission to have a "fetal position" day when it's all just too much. Strangely, not always having putting on a bright face actually helps!
  • NancyOram Nov 13, 2008 @ 6:01 pm | delete
    Really excellent information and thorough lens. I hope your recovery is steady and complete in time.
  • Rajays Oct 16, 2008 @ 12:30 pm | delete
    Wonderful information you have here AJ. I have learned a lot today from this lens. 5* and lenrolling on my Tinnitus lens.
  • Margo_Arrowsmith Sep 22, 2008 @ 10:07 am | delete
    Interesting that the percentage is so much higher in the US than the UK. Wonder why that is.

    This is important and will go on my squidoo library lens!
  • tdove Aug 28, 2008 @ 5:42 pm | delete
    Thanks for joining G Rated Lense Factory!
  • aj2008 Aug 27, 2008 @ 1:07 pm | delete
    Oh but I do stress sometimes as it is hard for my children. The condition is "invisible", it would be much easier for them to understand why Mummy has no energy if my leg was in plaster and I was on crutches! I think I should probably add this point into the main text.
  • mosaic Aug 26, 2008 @ 10:17 pm | delete
    This is a very complete lens. Excellent! You are very honest about the condition, and I'm glad you're not stressing out about it!
  • mulberry Aug 26, 2008 @ 7:53 pm | delete
    Outstanding lens, solid info, and great visuals.

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aj2008

Otosclerosis is a disease I had never heard of until I was diagnosed as having it. Now, I know a lot more about it as my family and I learn to live with... more »

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