Deaf4Life - Bringing the Community Together: Otosclerosis - Deaf4Life - Bringing the Community Together

Jump to content

Page 1 of 1
  • You cannot start a new topic
  • You cannot reply to this topic

Otosclerosis Any info appreciated

Posted 03 November 2010 - 11:47 AM (#1) User is offline   cat-friend 

  • Posts: 14
  • Joined: 31-October 10
  • Gender:Female
  • Location:SW England
  • Hearing Status:Hard Of Hearing

Hi :rolleyes:

If you have read my fist post, you will know that I've had a recent diagnosis of otosclerosis. The doctor I saw at hospital was quite brief and has discharged me from outpatients - so I have googled for more info. There seems to be a lot about the condition, but I have not found much on how it actually affects the person ;)

From what the doc said, I've got quite poor hearing in my right ear and it has gone from normal hearing to this level in about 6 years - I wear a hearing aid in this ear which I got in June and it has helped considerably. My left ear is now also starting to deteriorate, but I don't use any aid for it right now.

Is it possible to tell how quickly my hearing will go, and will it continue to deteriorate at a similar rate? Will I be completely loosing my hearing? Do operations help at all? - my doc said not at the moment because the op is so delicate that it could do harm.

Presumably some education in lip reading, body language and signing would be useful for me, but I don't know when or where to start this :cc_confused:

Sorry if I'm coming across as quite negative, but I'm at a bit of a loss about where to start...but this forum seems like a good place to me :)
0

Posted 03 November 2010 - 03:15 PM (#2) User is offline   Steve 

  • Posts: 1,864
  • Joined: 07-February 10
  • Gender:Male
  • Location:Cheshire
  • Hearing Status:Deaf

First let me comfort you into not thinking that any question you have is boring or in any way negative, we all have our down days..The best advice to start with is the doctor/specialist, then if you have any further questions they are the best people to ask.. "Medically".
Spiritually and support we can offer you, and if we know how to help we will, and we will give you our personal views and experience if possible. We can also put you in touch with anyone who can give you further support. ie.. give you Ideas and keep you up to date with the latest help available and whats new via blogs, and other resources..or help you in your daily life.

Otosclerosis is considered a deteriorating condition, but the onset speed and progression nobody knows, there is an operation available (stapedectomy) (stapedotomy) but like you already mentioned its not worth the discomfort in the early stages, as it may not progress but is worth it in the last stages when people have no useful hearing left. Hearing aids are most commonly the best solution until the last resort, BAHA's (Bone Anchored Hearing Aids)

Since I last talked on the subject, Ive found out that ethnic minorities don't tend to suffer from Otosclerosis, and they are developing fluoride medications further to inhibit progression.

Good luck when you visit the specialist, and please do let us know how, and what happens as far as I know you are the only future otosclerosis expert we have? :cc_confused:
Posted Image
0

Posted 03 November 2010 - 03:15 PM (#3) User is offline   tishcat 

  • TISHCAT
  • Posts: 1,063
  • Joined: 08-February 10
  • Gender:Male
  • Location:lancashire
  • Hearing Status:Hard Of Hearing

I have been severely deaf since birth but i have still had moments of worry and self awareness about my hearing loss
Like you, i don't know if it will get worse and have wondered what i would do if it did.
I am a great believer in learning to sign as much as you can. This will ensure you can communicate well with other deafies and are able to use an interpreter should the need arise.
It is only natural to worry or even grieve for the loss of a sense. If, however it starts to effect your wellbeing, you are best off talking to a professional of some kind.
All the deaf charities are very helpful and one in particular http://www.hearingco...k.org/index.php deals with a lot of the issues facing the newly deafened. Which is the category i think, you fall under.
Hope this helps.
Posted Image
0

Posted 03 November 2010 - 05:42 PM (#4) User is offline   stuart 

  • Posts: 777
  • Joined: 05-March 10
  • Gender:Male
  • Location:Southsea
  • Hearing Status:Deaf

I have had otosclerosis in Both ears, It can be abnormal growth of bone in middle ear, normally affects stapes bone, it does cause different types of hearing loss, from mild to medium severe and bam!! nothing....... as Sirgarg said we can only offer advice on this, As this condition affects people in different ways.

Mine affected major bone and I ended up having bones removed but that was after a few bone scrapes.The bone can spread to COCHLEAR that i think is called (cochlear otosclerosis) and can cause sensorineural hearing loss..

But as sirgarg and myself has said Ear Specialist IS 100% THE PERSON YOU NEED..I cant explain my problems when I had it, as Im difficult patient with many or should i say who had many problems maybe 90% of possible problems that are ear related lol....

But progressive hearing loss typical of otosclerosis..Do you suffer Tinnitus as it also causes that as well Im sad to say...:-( And how is your balance ?

I have nothing at left in my ears I MEAN NOTHING lol I had Complete Obliteration of everything that i had left, as I had nothing that was working...

This is good forum to chat, so chat away we will help best we can....

yours
leading ear Consultant Stu haha Im joking

seriously Good Luck.

This post has been edited by sirgarg: 03 November 2010 - 06:48 PM

Dont Shout,Im Deaf
0

Posted 03 November 2010 - 07:11 PM (#5) User is offline   stuart 

  • Posts: 777
  • Joined: 05-March 10
  • Gender:Male
  • Location:Southsea
  • Hearing Status:Deaf

Quote

I had Complete Obliteration of everything that i had left, as I had nothing that was working...




1 of the reasons for Obliterations was otosclerosis had done a lot of damage :-(


Inner Ear problems can cause many things 1 cant explain all, and that was NOT fair comment on Brain either as that also had Damage Caused by Ears....Think 1st.

? :cc_confused:

This post has been edited by sirgarg: 03 November 2010 - 10:38 PM

Dont Shout,Im Deaf
0

Posted 03 November 2010 - 10:01 PM (#6) User is offline   cat-friend 

  • Posts: 14
  • Joined: 31-October 10
  • Gender:Female
  • Location:SW England
  • Hearing Status:Hard Of Hearing

Thanks for your replies - it is good to chat and to find out different ideas and experiences. I realise that I don't know anyone who I know is deaf including my family, friends and work colleagues!

I think that the doc was hinting that I will loose all my hearing eventually. I do have tinnitus which started in my right ear around 8-9 years ago and has more recently started in my left. I am very used to it and it doesn't usually bother me unless I'm ill or feeling low. I don't have any particular balance problems but I do get bad motion sickness in cars/coaches.

I will speak with my GP on Friday to see what further advice she has to give and hopefully I will get a referral to someone who can give me specific medical advice about my situation.

The grief of loosing a sense is very real including things like wondering how much of my daughter's singing and piano playing I will be able to hear in later years. Also I am a classical music fan...I now appreciate how much I can still hear and hope I will be able to hold onto those memories as my hearing goes downhill.

I do have many concerns about the future, but at the same time I realise that it is no good worrying about the what-ifs that may never happen, and get on with enjoying all the good things I have :cc_confused:
0

Posted 03 November 2010 - 10:42 PM (#7) User is offline   Steve 

  • Posts: 1,864
  • Joined: 07-February 10
  • Gender:Male
  • Location:Cheshire
  • Hearing Status:Deaf

Quote

Inner Ear problems can cause many things 1 cant explain all, and that was NOT fair comment on Brain either as that also had Damage Caused by Ears....Think 1st.

? ;)


Please accept my apologies Stu obviously its a sensitive subject, and quite right too... :cc_confused:
Posted Image
0

Posted 04 November 2010 - 07:37 AM (#8) User is offline   stuart 

  • Posts: 777
  • Joined: 05-March 10
  • Gender:Male
  • Location:Southsea
  • Hearing Status:Deaf

 sirgarg, on Nov 3 2010, 10:47 PM, said:

Quote

Inner Ear problems can cause many things 1 cant explain all, and that was NOT fair comment on Brain either as that also had Damage Caused by Ears....Think 1st.

? ;)


Please accept my apologies Stu obviously its a sensitive subject, and quite right too... :cc_confused:

I thank you Sirgarg, yes mate very sensitive, I still have appointments many years on. Anyway lets forget...cheers

Stu
Dont Shout,Im Deaf
0

Share this topic:


Page 1 of 1
  • You cannot start a new topic
  • You cannot reply to this topic

1 User(s) are reading this topic
0 members, 1 guests, 0 anonymous users


IPB Skins by Skinbox


Enter your sign in name and password


Sign in options
  Or sign in with these services