CI Rehabilitation after Activation

@arj @joanhawsey went to Vanderbilt for her surgery and activation. Hopefully she will pop in and tell you about her experience.

Once you have been activated I think they could recommend an audiologist closer to your home. So you won’t have constant visits to Vanderbilt.

That is another thing I would have to consider if traveling at some distance for the surgery and mapping. I also wonder if there is any kind of time frame if or when you could fly after surgery.

Contacting the implant manufacturer might give you some other options if interested.
All 3 brands are great about helping.

Yes, I went to Vanderbilt. It’s a five hour drive for me. Since my surgery was late in the day, I stayed over at a motel in case of complication and my husband drove us home the next day. I would contact them and ask about their same day activation option for people coming from a distance. I know someone who was able to do that. I had hoped to, but wasn’t far enough. I now get my follow up from a great CI audiologist less than an hour from her. I chose Advanced Bionics and am very happy with it.

A couple thoughts.
I did my testing locally first to see if I qualified. Vanderbilt then did their own testing and I had to visit. However, I believe with the long distance arrangement they do their testing in the morning, surgery in the afternoon and perhaps activation the next day. People do fly home. You would want someone with you of course to help with lifting etc.
my experience with Vanderbilt was good. My surgeon called personally the day before to review the procedure and spent a foot but of time. I was stunned by that.

You can be activated but that doesn’t mean you have to wear your processor right away if it bothers you. That would be up to you. You would likely start with a stronger magnet due to swelling , but your AUD at home can change the stength in a follow up appt. There is research to support quick activation, not harmful. But scheduling usually is such that they choose to push it out. I requested sooner than a month since I had to be working asap, so I was about 20 days post for activation. Sooner would have been fine.

Being calm and positive will help your recovery.

Thanks @joanhawsey . I did actually call them and i spoke to a cochlear coordinator. She said as you did that I would need to be evaluated first and then send the results to them and they actually would re evaluate to schedule further testing by them I would guess. She was kind of brief and I think very busy. So now I would have to figure exactly how to go about this and get started which would first be to find someone local to test if I would be a candidate… I need to find out a bit more information about how to set this all up. Did you just call Vanderbilt or have your local audi set this up? Thanks again,

That’s great. You can do either, but I had my audi send my results to Vanderbilt. If you qualify hearing wise, you will also need an MRI ordered. My Aud took care of that. If you haven’t talked to a representative from the cochlear company(ies) of interest, that is very helpful. I zoomed with all three. I will say that Med El and Cochlear tend to be a bit harder sell and tended to diss Advanced Bionics without naming them. Others I have talked to had similar experiences, so just keep that in mind. As for the cochlear coordinator, if it is the same person I worked with a year and a half ago, I was not impressed. I had to do a lot of follow up and ended up getting more info out of others I contacted there, so I encourage you to press to get what you need. Everyone else was super helpful.

If you are interested in having a HA for the other year that works together with the CI, then AB might be the best choice. Their Phonak Link HA works with the same app and they help each other. Others can require separate apps for each and blue tooth only through the CI or with an additional piece of equipment. Mine work hands free and the CI mic picks up my voice. My phone can be across the room and I can listen and talk.

As for pain and issues - I didnt’ have much pain after the first couple of days. Think I took a pain pill the first night and then just Ibuprofen for a couple of days. No headaches or issues, really. Some very limited vertigo but it was just a couple of episodes and disappeared. My brain and anxiety over how it would sound made it seem harder than it actually was I think.

To your questions. This is surgery and involves about 1 1/2 hrs of it. There are good walk throughs on line that go into the details. Stanford has a very nice animation as do the CI companies.
So afterwards there is pain, but not great. You take Tylenol with or without codeine for this over ~ 4 days. I was fine with just Tylenol.
I didn’t have any headaches, just soreness and sensitivity around the surgical area…
Sleeping can be a bit touchy as it is easiest to avoid putting your implanted ear on the pillow for a few days. manageable.
I have numbness on the top of my ear (very common). This will come back in a few months.
The sensation in my implanted ear is more like fullness, not gurgling.
At this point I also don’t have any hearing in that ear. We’ll see how that resolves as time goes on, but I was prepared for that possibility and opted for a full insertion to maximize the frequency range that would be subject to stimulation and give me the best chance at richer hearing with the CI.

@jcech Thank you and all the best

While I am sure that Vanderbilt and even the U of I are great, so are other locations that might be very close to you. Iotamotion has a website and a very good representative who knows all those centers that are approved and set up to use their system. Reach out to her and ask where their IotaSoft is being used. Like the CI companies, she knows all the leading surgeons.

I selected Thomas Jefferson Hospital in Philadelphia, an din fact had the implantation done in Cherry Hill NJ where it was approved for use. It was the only location in the Philadelphia area that used it (too new).

I would be surprised if there wasn’t also a highly rated facility in FL or Atlanta, and both have to be much closer.

Oh okay, I had read about it being developed and first used at U of I. I didn`t realize that it is now being offered at other clinics. Thanks for the heads up…

I am always amazed how helpful people are in this forum. Recently I had a hearing test, and the audiologist scheduled me for testing to see if I am eligible for a cochlear implant. No, I have not posted my new audiogram yet. I won’t have the tests for eligibility until February 19. Assuming I am eligible, I will probably travel for the surgery. Honestly, I wish I could have rehab with an audiologist out of this area as well. Medical care can be spotty here, and I really want a good outcome. I am tired of missing so much sound! I have been wearing hearing aids for more than 15 years, and my speech understanding has gotten poor, particularly in my right ear (24% R, 60% L.) I have been reading about Envoy Medical’s fully implanted cochlear implant Acclaim, which will likely start clinical trials this year. (I have been a research coordinator and am familiar how those things work). If possible, I would like to participate in that trial. If that is delayed too long, I would like to go to a great center. So I am a newbie in this area and really appreciate what has been shared here. I am open to suggestions at this point.

@ibawaya said:

I am open to suggestions at this point

There is a lot of information about CI out there.
Most of it is personal because that is what they got so it’s the best.

After doing a bunch of research I was pretty much confused, not sure what direction to go in.

I learned they are all good. The difference is the surgeon, audiologist and local availability. I couldn’t justify driving a bunch of miles because someone I didn’t know said I should.

I ended up talking to a highly rated surgeon that gave me his thoughts on Cochlear Implants. So I went the direction he recommended for my area. That has worked out great for me.

Each of us has to do what we think is best. It’s a big part of the journey. After that it’s actually very easy.