Anyone has had translab + cochlear implant?

[mendozaulises78]

Hi all,
I am relatively new to the forum.
My story:  Noticed gradual hearing loss on both ears but around 2020 loss more pronounced on left side.  I went to Costco to get a hearing test, and they said I would need hearing aids but since insurance doesn't cover costco hearing aids I decided to wait and see an ENT.  They did a test, showed me the audiogram and explained that there was a huge difference between right and left ear.  I have mild hearing loss on right, and moderate to severe on left side.  The ENT said that normally this big gap indicates a tumor on the bad ear, so they ordered an MRI and when the MRI came back they confirmed an acoustic neuroma 8x5x4 mm.  He sent me with a Neurotologist and he gave me the 3 options.  Wait and see which he would recommend, or surgery but I would lose my hearing on the left side or radiation.
I decided to wait and on my 1-yr follow-up MRI the tumor grew 2mm on one dimension and 1 on another, so now it's 10x6x4 mm.  My hearing did not decline further and my word recognition score is at 50%
At this point the neurotologist recommended to be treated, and he mentioned that if I really wanted to keep whatever hearing I have, some centers are doing translabyrinthine approach and put a cochlear implant at the same time and that I had about 60% chance of being able to hear on that side.

I haven't found much information about that approach, so I wanted to ask this forum if anyone has heard of that approach, or better, if anyone has had it and how difficult it was to adapt to the cochlear implant.

[donjehle]

Hi mendozaulises78,

Welcome to the ANA Forums!  Thanks for posting your experience and asking your questions.

I have not had either translab or a cochlear implant, so I'm not the best one to answer your questions.

However, since you are relatively new to the forums, you may not be aware of how you can search for answers.  You have to go to the Home page to do your search (if you do it in here, you will only get answers from this thread which is not what you want).  So go to the Home page, find the Search area on the right side, type in "translab" and "cochlear implant", and it will give you results which mention both translab and cochlear implant.  I think you might find some of those posts very interesting.

Best wishes on your journey!
Don

[mendozaulises78]

Thanks Don, let me search that way.
I had a consultation with Dr. Friedman at UCSD and he mentioned that this would be one of the possibilities I had but that it is still in experimental phase.
According to him the patients that have tried this approach it has worked for them and are very happy. 
They told me they will try to contact the other patients and see if they can share their experience with me.

[donjehle]

Thanks for sharing that!  Keep us posted on what you find out!

[RickJ4]

I'm new here and joined because I am scheduled to have translabyrinthine surgery and cochlear implant surgery in the same procedure in June 2023. I have done some research and although this procedure is somewhat newer in the field of acoustic neuroma surgery, it has been done successfully at some university-based hospitals such as Duke University. I am getting my surgery done at Wexner OSU Medical Center in Columbus. My acoustic neuroma (schwannoma) is relatively small at 6mm but the decision for surgery was made because it has doubled in size in six months and the overall success rate seems to favor smaller tumors. I am down to less than 40% word recognition in the affected ear and have constant tinnitus that fluctuates quite a bit. The medical team seems confident that I should be able to preserve some of my hearing via the cochlear implant, depending on how badly the acoustic nerve has been damaged by the tumor. In conjunction, I lost 50% of my hearing in my left ear 10 years ago, but since my right ear was good up until last July, I didn't get a hearing aid. All that has changed and I pick up a my new hearing aid for my left ear in 2 weeks.
So in answer to your question, the translabyrinthine surgery and cochlear implant have been done successfully and I hope my surgery adds to the success rate!
I'll post results after my surgery.

[donjehle]

Hi RickJ4!  And welcome to the ANA Forums!  I hope that you will find our community here a wonderful place to receive answers to your questions as well as care and support.

It appears that you have done your research.  The Ohio State University Wexner Medical Center is one of the top places which specialize in acoustic neuromas.  I am sure they will do an excellent translab and cochlear implant surgery for you.

However, I am a little surprised that you are receiving a new hearing aid in a couple of weeks.  When a friend of mine (who doesn't have an acoustic neuroma but has had hearing issues since a child) had cochlear implant surgery, he was told NOT to get a new hearing aid until a few weeks AFTER his surgery.  If I understood what he said correctly, his hearing would change after the cochlear implant surgery, so to get a new hearing aid before surgery would not be productive.  At least, that's how I remember our conversation.  You might want to doublecheck with your audiologist.  Perhaps, that is the best way to go in your situation, but it just causes me to wonder about it.  I would have thought they would have wanted you to wait until your surgery in June and then have you get a hearing aid after that -- if it's even needed then!

I must admit that I'm jealous of your 40% word recognition score.  Mine is only 12% in my AN ear.  And when I forget to put my CROS hearing aids in, I cannot hear very well.  Please keep us posted on your procedures and how they went!

Best wishes on your journey!
Don

[RickJ4]

Thanks for the warm welcome Donjehle!
To clarify, the hearing aid is for the left ear and the cochlear will be in the right ear. I'm getting the Oticon Real 1 which came out around 6 months back. I grilled the cochlear req (MedEl) and the audiologist and they both said with the most recent technology I can get my hearing balanced out with the cochlear. I am sure it will be a learning experience and I think a lot depends on how much of my auditory nerve can be preserved through the surgery. So we'll see how matters progress but it has been pleasant finding this forum to learn and share.
I should add that 12% WR would be extremely difficult--I wish you the best!

[donjehle]

Thanks, RickJ4, for that update.  I have often wondered how it works when one ear has the cochlear implant (which I understand takes months of training to recognize words) and the other ear has normal or reduced hearing.  I guess I don't understand how the two types of hearing balance out.  I will be anxious to learn how it will work in your experience!

Best Wishes!
Don