Jump to content

Ci candidate with malformed cochlea seeks like-malformed individuals!


Abi
 Share

Recommended Posts

Have been accepted for a CI, have been advised I have two malformed cochlea and that it is likely I will require custom made electrode arrays. Desperately seeking anybody who has been in the same boat. This has fairly knocked me for six as I have been advised of high risk of CSF leakage and risk of sub-optimal outcomes. 

Link to comment
Share on other sites

  • HearPeers Heroes

Abi,

 

I hope you find some other custom electrode array individuals here.

The title of your post shows your strong spirit.  I love it!

Link to comment
Share on other sites

  • HearPeers Heroes

Hi Abi,

Leigh Ferguson and Ben Hodgson from MED-EL Austria are the administrators for this forum. They will assist you with your needs. Leigh is on holidays. I will tag them both. 

@Bhodgson

@leighf

 

Link to comment
Share on other sites

  • HearPeers Heroes

Hi Abi! Welcome to Hearpeers! I have survived a double CSF leak during surgery. Plus I have had a fantastic outcome so far!! Keep you hopes up. There always a chance. Best of luck!! 

 

Kara ?

Link to comment
Share on other sites

Flipping heck, do you have a malformed cochlea? What did they with the leak? Did you spend longer in hospital? What was your hearing history beforehand? Thanks for getting back to me.

Link to comment
Share on other sites

  • HearPeers Heroes

No my cochlea is fine. I had a herniated section of my brain that they didn't see,  and an EVA. Which they also didn't see till surgery. Even with the MRI and CATSCAN. I have sensor all neural hearing loss and an EVA. Which a genetic defect making the semicircular canal larger at the section where it allows the fluid to flow through. Which is a risk for CSF. They patched the herniated section with a fat graft. The rest they didn't tell me. I was in hospital for three full days. As they were concerned about a possible leak in my sinus. 

Link to comment
Share on other sites

  • 4 weeks later...
On 6/11/2017 at 5:30 PM, Abi said:

Have been accepted for a CI, have been advised I have two malformed cochlea and that it is likely I will require custom made electrode arrays. Desperately seeking anybody who has been in the same boat. This has fairly knocked me for six as I have been advised of high risk of CSF leakage and risk of sub-optimal outcomes. 

Hi Abi, thanks for reaching out to the HearPeers Community. Many MED-EL cochlear implant recipients have benefited from our custom-made electrode arrays. The best thing to do is to get in contact with your local MED-EL Representative who can offer you more information and support on your specific case. I have sent you a private message to find out where you're from. Kind regards, Leigh - HearPeers Community Manager

  • Like 2
Link to comment
Share on other sites

  • 2 months later...

Hi there, in 2001 I had been told I had deformed cochlea and had to use medEl for the custom electrode was the best for for me. I had issues with the implant being too close to ear as the magnet would attach to processor (instead of implant) if I moved to quick. I went back 2003 and surgeon just pulled it and placed it further out. That created issues to my facial nerves and I gave up! I had enough! Then found a highly recommended and successful surgeon for reimplantation of a newer updated medEl in 2015. I don't think they had any other issues during reimplantation surgery. No facial nerve issues and placement was perfect. I continued to be highly sensitive to stimulation and progress is still very slow. I only "feel" the sounds so far. It rocks my brain at every readjustment appointment with Audi. I cannot wear CI for more than few hours. I get headaches. That's my summed up journey, not too happy. Hope your journey will be better! Have a happy day!

Link to comment
Share on other sites

  • HearPeers Heroes

You have had a tough journey Angelina.  I am sorry to read about that.  I hope things improve for you.  

Link to comment
Share on other sites

  • HearPeers Heroes

Hi Angelina,

Welcome to our forum. I am glad your found us. Like Mary Beth said, I also believe your situation can be significantly improved with some special efforts and, especially, with professional help. Please, have hope in your body ability to heal and adjust to a new addition. Just give it more time and be even more open to your experience.

Please, find more strength to continue your journey.

Link to comment
Share on other sites

  • HearPeers Heroes

Hi @Abi!  That is understandable.  There are so many emotions as we get ready for surgery and your wait for surgery was more complicated due to the need for a custom electrode array.  I think I was fortunate in hindsight that my first CI surgery was scheduled even sooner than I anticipated.  It did not give me much time to feel anxious.  I was not anxious at all for my second CI surgery because I already knew how awesome CIs were for me.

Do you have a surgery date yet?

There are never any promises for any of us prior to CI surgery.  In a way, we have all taken a leap of faith.

 

I am wishing you the absolute best!

Link to comment
Share on other sites

It's on the 5th of October. I've had some contact with a Medel rep, still not feeling reassured at all. All I have to go on is the surgeon's assurances.

Link to comment
Share on other sites

  • HearPeers Heroes

@Abi, I will keep you in my thoughts on October 5th.  I hope your surgery goes smoothly and your recovery is easy.

Link to comment
Share on other sites

  • HearPeers Heroes

Best of luck Abi! I will be thinking of you also on the 5. 

Link to comment
Share on other sites

  • 3 weeks later...
  • HearPeers Heroes

Try to get a little sleep. This is a great support group. Leigh represents the best of MED-EL. We will all be thinking of you and look forward to working with you to help you get the most from your CI. Go to sleep. :)

Link to comment
Share on other sites

Hi Abi, 

It's totally understandable that you are feeling nervous, I think most people feel the same way leading up to getting their first CI! Remember that the HearPeers Community will always be here for you, and we will do our best to give you support, advice, and information throughout your journey to improved hearing!

Let us know how it all goes on your big day, and take care!

Thinking of you,

Leigh 

HearPeers Support Team

Link to comment
Share on other sites

  • HearPeers Heroes

Thinking of you Abi and wishing you the absolute best!

Link to comment
Share on other sites

On 9/16/2017 at 10:30 AM, Angelina salas said:

Hi there, in 2001 I had been told I had deformed cochlea and had to use medEl for the custom electrode was the best for for me. I had issues with the implant being too close to ear as the magnet would attach to processor (instead of implant) if I moved to quick. I went back 2003 and surgeon just pulled it and placed it further out. That created issues to my facial nerves and I gave up! I had enough! Then found a highly recommended and successful surgeon for reimplantation of a newer updated medEl in 2015. I don't think they had any other issues during reimplantation surgery. No facial nerve issues and placement was perfect. I continued to be highly sensitive to stimulation and progress is still very slow. I only "feel" the sounds so far. It rocks my brain at every readjustment appointment with Audi. I cannot wear CI for more than few hours. I get headaches. That's my summed up journey, not too happy. Hope your journey will be better! Have a happy day!

Hi Angelina,

Thanks for reaching out to the HearPeers Community. Everyone's hearing journey is different, and I'm sorry to hear about the challenging time you've had so far. I recommend to stay in close contact with your CI team including your medical professional, surgeon, and audiologist about all of your symptoms and experiences, and to also speak with your MED-EL Representative. Let me know if you need any contact details, or if you would like me to forward this information on to your local MED-EL Representative for them to get in touch with you to offer further support. Wishing you all the best.

Kind regards,

Leigh 

Link to comment
Share on other sites

  • HearPeers Heroes

Welcome to the CI club.  When is your activation?  Rest easy.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
 Share

×
×
  • Create New...