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Haidee from South Africa (introduction :-) )


Haidee

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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

 

 

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Thank you for sharing your story.  You have been through so much.  I hope your pain eases and this is the beginning of a great hearing journey for you.

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Wow what a trooper! Happy international women's day! You made mine!! 

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Haidee, reading your story I thought what a beautiful spirit you have. I am sure you will be fine soon. Wish you and your sons all the best!

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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

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Small world!  Smile.

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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

Tiaan_Superman.jpg

Tiaan_Operasie.jpg

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On ‎2017‎-‎03‎-‎10 at 8:20 AM, Cara Mia said:

Haidee, reading your story I thought what a beautiful spirit you have. I am sure you will be fine soon. Wish you and your sons all the best!

Hi Cara Mia,

Thank you so much for your kind words!  And well wishes.  I am sure in a month or two, I will look back at all of this and have a good laugh at the crazy time.

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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.

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He wears his Superman uniform well!  What a cutie!

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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



Haidee,

What a wonderful photos of your son -- such a great character he is. [emoji4][emoji3][emoji3]

I live in Croatia, a small European country, and I was in his domicile hospital in Lübeck. Great person and magnificient wizard...[emoji4]

Regarding my implantation of the Bonebridge, luckily, I haven't had slightest issue: I didn't have pain at all. Actually, on forth postsurgical day I went' riding my bike for 30km and I felt great!

You, however, had a bad luck - if your ENT expects blood in your middle ear cavity, it seems to me that you have an open communication with the mastoid cavity. From what you have explained to me, it seems that the severity of your middle and outer ear is grade 1. I have more severe grade both: left without and right with narroe ear canal. Ear canal is present but - not too useful. In my case, it is the other way around: it happens that I am not a candidate for the BB, but might be for the Soundbridge. But before everything else, I have to finish my outer ear reconstruction which is why I plan to see Dr. Frenzel again very soon. He is the one of very few ENT surgeons who started to implant Soundbridge with atresia group of patients. Great man!
Did you have an opportunity to contact him regarding your postoperative accident?
Putting a grommet is a reasonable option if blood in the cavity has organized.

Sent from my EVA-L09 using Tapatalk

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