Jump to content

Ivana Marinac

HearPeers Heroes
  • Content Count

    2,819
  • Joined

  • Last visited

  • Days Won

    94

Reputation Activity

  1. Like
    Ivana Marinac got a reaction from Julesrdh in Decision on implanting !   
    Interesting... Present thoughts of professionals are to implant the ear which has deafened latest, and then try the other way around.
    Before this era, it was different but scientists understood that the atrophy of the cochlear nerve is crucial for the success of the rehabilitation so it us better to start with better ear inspite of other reasons.

    Sent from my EVA-L09 using Tapatalk


  2. Like
    Ivana Marinac got a reaction from Julesrdh in Decision on implanting !   
    Julesrdh, you asked whether you should implant the affectd ear which has deafened years ago or newly deafened ear? Or you are considering bilateral implantation?

    Sent from my EVA-L09 using Tapatalk


  3. Like
    Ivana Marinac reacted to Adam in Cochlear implant day   
    Exactly Ivana. 
    I saw this saying which pretty much sums it up.
    "My Scars tell a story.....They are reminders of when life tried to break me, but failed."
  4. Like
    Ivana Marinac reacted to Adam in My personal presentation   
    YESSS!!?
  5. Like
    Ivana Marinac reacted to Mary Beth in Haidee from South Africa (introduction :-) )   
    He wears his Superman uniform well!  What a cutie!
  6. Like
    Ivana Marinac reacted to Cara Mia in Haidee from South Africa (introduction :-) )   
    I am sure you will. And we will be glad to laugh with you, too. Those crazy times are a good opportunity to cry and then laugh together to pass it faster and easier. Your Tiaan Superman is absolutely adorable! Nice to meet him, too.
  7. Like
    Ivana Marinac reacted to Haidee in Haidee from South Africa (introduction :-) )   
    Hi Ivana,
    Wow this is awesome to be chatting to someone with the same Dr even though we are so far apart!  Where do you stay?
    I have never been officially diagnosed as having Microtia/Atresia, my left ear and canal is present and correctly formed, it is just smaller than the right side.  The hearing bones and ear drum never really worked, they were a bit malformed, which led the ENT to replace them with a prosthesis, but it was not successful. 
    My son was a good candidate for the Sound bridge, because his anatomy inside the middle ear and his auditory nerve was in really good condition and he was still 3 years old.  As for myself, Dr Frenzel said that because I have not had normal hearing for so many years, the normal auditory nerve pathway in my brain have been used by other senses by now and I would not benefit from the Sound bridge.  My best option would be bone conduction, which is why I got the Bonebridge. 
     
    I have my follow up appointment with my local ENT tomorrow, she'll then decide if we are going to put a grommet in my ear to assist the blood from draining and hopefully relief the pain. 
    Where you in lots of pain after your operation?  If so, how long did it last?  Did you have a headache?  I'm really struggling with sharp earache and a headache that keeps coming back.  But I'm more than happy to suffer a bit for the hearing that I'll get later.  I'm so excited and cannot wait for the external device and switch on! 
     
    Ps.  I've attached a photo of my little man (he's convinced he is Superman!), if you ever chat to Dr Frenzel again, I'm sure if you mention him, he'll definitely remember Tiaan Superman  :-)
     
    Regards,
    Haidee


  8. Like
    Ivana Marinac reacted to Mary Beth in Haidee from South Africa (introduction :-) )   
    Small world!  Smile.
  9. Like
    Ivana Marinac got a reaction from Haidee in Haidee from South Africa (introduction :-) )   
    Hello Haidee,

    Dr. Frenzel is also my Doc [emoji3]

    I was born with bilateral microtia and atresia of hearing canals. Few months ago I have started the process of reconstructing my outer ears.
    Three years before that, I was implanted with Bonebridge - absolutely amazing device.

    If I can ask you, what was the reason that your son got the Soundbridge, and you - the Bonebridge?
    If I have understood you well, you both have - unilateral microtia/atresia.. ?

    Regarding the BB, you're gonna love it - you'll see it! [emoji6]
    If there is anything I can help - just shoot!

    Sent from my EVA-L09 using Tapatalk


  10. Like
    Ivana Marinac reacted to Haidee in Haidee from South Africa (introduction :-) )   
    Hi everybody,
    As I mentioned before, my name is Haidee, I live in South Africa.  I can remember from when I was very little, probably around 4-5 years old, being in a hearing booth testing testing testing.  My mom took me to so many audiologists and ENT specialists over the years, because she suspected something was not right.  But unfortunately all of them told my mom, not to worry, there is nothing wrong with my hearing, my left ear and canal is just smaller than the right. 
    In 1996 I had my first son, he was born with little growths in front of his one ear, I cannot even remember which ear it was.  Nobody really thought anything of it, I had a plastic surgeon remove it when he was about 4 months old and that was the last of it.  He had hearing tests done before going to school and luckily there was nothing wrong with his hearing.
    Some time during my adult life, I started realising that I cannot hear well.  Long story short, I've been to more audiologists and ENT specialists, had a few ear operations where the middle ear bones were replaced with prosthesis etc.  I found these operations extremely traumatic and after none of it actually doing anything to increase any amount of hearing I had, I just thought well that's it, I'll live like this and deal with it. 
    In 2013, my third son was born with Microtia/Atresia of the left ear.  The audiologist who came to visit us in hospital to test his hearing, was absolutely astounded at what I've been through and still could not hear. 
    With her help, I ended up getting a BAHA on the abutment in 2014, which was amazing.  Only then did I realise what I've missed all my life.....and why I hated school with such a passion!!!  I've been ridiculed, teased and was always in trouble for being disobedient and not listening....
    We've now been blessed with a group of Doctors who are all angels in our lives!  My little man, Tiaan, received his Vibrant Sound Bridge in September last year and is doing so well.  He loves it and seeing his little eyes sparkle every time I put it on, is amazing.
    Prof Henning Frenzel from Germany came to South Africa and performed Tiaan's operation.  So when he saw my BAHA abutment and how I'm struggling with constant infections, he suggested that I get the Bonebridge.  Prof Frenzel came back to South Africa now a week ago, he removed my abutment and screw and implanted the Bonebridge. 
    Unfortunately the day after being discharged from hospital I started having extreme pain and was admitted back into hospital.  A hematoma formed and pushed blood from behind my ear, through to my eye....hahaha, looks like I've been in some hectic bar fight.  I've been discharged, but is still experiencing quite a bit of pain and headaches, I'll give it a few days and then give the ENT specialist a call again. 
    For now I'm really exited to get the external device fitted and switched on, but will have to wait a while for the scars to heal and swelling to go down.
    Myself, another mommy with a little one with Microtia/Atresia and a friend we've made who also have Microtia/Atresia and Goldenhar syndrome are trying to spread awareness and find assistance for children in South Africa, as here isn't really much info or specialists with knowledge in this arena.  And I would do anything to help a child to not go through life, specially school life, like I did.  It is heart breaking. 
    Regards,
    Haidee
     
     
  11. Like
    Ivana Marinac reacted to Adam in Cochlear implant day   
    Some people where I live are more discreet about it as they are curious. I totally get that. 
    The fact that I have many scars bumps and valleys on my head ( my barber just loves me ?) some people are pretty blatant and stare as if they saw a monster. 
    It still bugs me a little as if they would just ask, I'd be glad to share. It isn't like they are going to catch anything. 
    I prefer a flat top haircut down to the skin on sides and the back. If I were to grow my hair out just to hide the processors, then the people that are ignorant about CIs and don't have manners win. 
    I decided I was not going to live my life like that. You can either take me for who I am, scars processors and all, or you can avoid me and still be uneducated about a pretty awesome technology. I will live my life on my terms, hopefully educating a few people along the way. 
  12. Like
    Ivana Marinac reacted to Adam in My personal presentation   
    You are right Ivana, Mary Beth is a total Rockstar!!
  13. Like
    Ivana Marinac reacted to Adam in My personal presentation   
    Thanks Ivana, that means a lot. 
    You taking that step will help so many people! Your influence has only scratched the surface. 
  14. Like
    Ivana Marinac reacted to Mary Beth in My personal presentation   
    You are too kind my friend.  Looking forward to a time when our paths cross.
  15. Like
    Ivana Marinac got a reaction from Cara Mia in My personal presentation   
    MB, You literally fascinated me by your quest for persisting improvement within all fields: technical details, equipment, rehabilitation process, your commitment regarding the understanding of the matter...
    Awhhhh....[emoji3]

    Sent from my EVA-L09 using Tapatalk

  16. Like
    Ivana Marinac got a reaction from Mary Beth in Foreign accents on TV   
    You know what... This is another great question, Adam.

    When I started using my Bonebridge, I have started to notice a lot better dialects which are obviously different and those which are just slightly different.
    I haven't done this before... [emoji53]

    Sent from my EVA-L09 using Tapatalk

  17. Like
    Ivana Marinac got a reaction from Mary Beth in My personal presentation   
    MB, You literally fascinated me by your quest for persisting improvement within all fields: technical details, equipment, rehabilitation process, your commitment regarding the understanding of the matter...
    Awhhhh....[emoji3]

    Sent from my EVA-L09 using Tapatalk

  18. Like
    Ivana Marinac reacted to Adam in My personal presentation   
    Would be interesting to hear her comparrison.
     
  19. Like
    Ivana Marinac reacted to Mary Beth in My personal presentation   
    Adam, I am a very understanding teacher.  Smile.
    Alessandro, Your English is way better than our attempts at Italian.  Smile.  No need to be concerned.
     
    Very interesting indeed.  I can't wait to read about your experiences once you are activated.  Thanks for sharing.
  20. Like
    Ivana Marinac reacted to Adam in My personal presentation   
    I am curious to hear your thoughts on the 2 differences. 
    Dont worry at all about your English. English is my native language and I'm sure I drive Mary Beth crazy as she is a teacher
  21. Like
    Ivana Marinac got a reaction from Cara Mia in Hearpeers in Germany   
    Well, they have just add a direct link toward our forum, but I think - that' s the point; not separating us than connecting us. If there is possibility to add sort of translation service like in FB where almost any language can be translated into a domicile one.... This would be great... [emoji1]

    Sent from my EVA-L09 using Tapatalk


  22. Like
    Ivana Marinac got a reaction from Cara Mia in Hearpeers on Tapatalk...   
    Me too GirlZ [emoji39][emoji7][emoji7]

    But, I wasn't sleeping - I have worked on a home project, hopefully I will find some time within next few days to write few lines ...[emoji3][emoji8]

    Sent from my EVA-L09 using Tapatalk


  23. Like
    Ivana Marinac got a reaction from Kara of Canada in Hearpeers in Germany   
    Well, they have just add a direct link toward our forum, but I think - that' s the point; not separating us than connecting us. If there is possibility to add sort of translation service like in FB where almost any language can be translated into a domicile one.... This would be great... [emoji1]

    Sent from my EVA-L09 using Tapatalk


  24. Like
    Ivana Marinac reacted to MED-EL Moderator in From South Africa   
    Hi Haidee, thank you for reaching out to the HearPeers community. If you are experiencing pain, I strongly recommend getting in touch with a medical professional as soon as possible. Your local MED-EL Representative will also be able to offer further support - I have sent you a private message with more information. 
    Kind regards, 
    Leigh
    HearPeers Support Team
  25. Like
    Ivana Marinac reacted to Kara of Canada in Hearpeers on Tapatalk...   
    Glad your back and this sounds great! I often see myself increasing the text size as well. 
×
×
  • Create New...