Another newbie

[Bryan]

Hello everyone well I landed here after searching and researching the CI. Thanks for having somewhere to come and read and ask questions and share experiences. Im in the process of starting this journey and trying to figure all this stuff out.

[Mary Beth]

@Bryan

Welcome to HearPeers!  Ask a my questions you have.  We are happy to help.

[Bryan]

Thanks  I guess I have so much going on it's about overwhelming I'm still trying to learn another word. In my case of hearing loss is about 4 months ago I went from having I guess normal hearing within about  2 hours I started having a severe ringing in my right ear to being completely deaf in my right ear and very close in my left ear. Next day started seeing a ENT I was told that I had sensorineural sudden hearing loss. I went thru 10 steroid injections and 20 hyperbaric treatments.about 4 weeks into it I gained very little sound back in my right ear and left has stayed where it is . since then I have gained severe tinnitus on the right side and left side is almost as bad. Now most all sounds seems to be amplified in my head I've had a very ruff time trying to find ways of dealing with this . So my audiologist recommended a hearing aid for my left ear and said she would not recommend a ci or hearing aid for my right ear because of the trouble I've had a long with some dizziness so they scheduled me for a surgeon and spoke with him he recommended a CI for my right ear and to wait on my left. There was a lot of discrepancies with the surgeon mostly not answering any questions and the conflict between doctors we decided to go for a second opinion.thats TOMORROW finally. I would like to hear from someone that's maybe had very bad tinnitus and problems of my nature before hand to see how a CI affected them after

[Mary Beth]

@Bryan

@Kylie may chime in as she had sudden hearing loss as well.

Which CI center are you going to?  I go to NY Eye and Ear in NYC.  I was most comfortable going to a large CI center as I figured they most likely had more experience with cases similar to mine.

For me, CIs greatly reduced tinnitus. @Jared Charney has shared a lot here about the reduction in his tinnitus as well.

Are you in the US?  Have you been connected with a Med-El rep in your region who can also help answer questions?

[Bryan]

Yes I'm in NC and was seeing a local ENT what little info I have has came from there.My first visit tomorrow is with wake Forest babtist. We have heard great things about them and can't wait to see what they say..I have not got any info from Med-El or anyone else yet.my surgeon was like this is what where doing . Thats what brought us to a second opinion 

[Mary Beth]

@Bryan

follow this link

https://hearlife.medel.com/en-us/local/us-pages/connect-with-medel

It will let you connect to your region’s Med-El rep and she will be able to give you a lot of information as well.

And keep asking questions here, we are a friendly group.

[Bryan]

Thanks Mary Beth I did reach out there. Where could I find more detailed information about working with a CI.things like wearing a hardhat I've seen a lot on sports and stuff with helmets (you can do whatever is comfortable at home) and very little for the work force .I did see a reference from one CI manufacturer on this and they reference to adding more padding where needed but under OSHA regulations no modifications are allowed to a hard hat. Has anyone ever had deal with this

[Mary Beth]

@Bryan

Yes this topic comes up.

There are two styles of CI processors.  One is a BTE (behind the ear) style.  For Med-El that is called Sonnet2.  It has a cable that connects to the coil that sits at the implant site magnetically.  The coil is called DL-coil and it is rather thin.  You can choose other wearing options with Sonnet2 that let you use a longer cable and clip the Sonnet2 to your shirt.  It may be comfortable to wear a hard hat with the DL-coil.  You may even be able to bring in your hard hat to an appt with your CI team and experiment a bit.

The second processor style is a one piece processor and for Med-El it is Rondo3.  It is much much thicker than the thin DL-coil and I doubt it would be comfortable under a hard hat.

Some CI centers in the US are what is called two processor centers and others are one processor centers.  How this works is…. At a two processor center with every CI surgery we get 2 processors in our kit so we start off with a back up processor.  The two processors can both be Sonnet2 processors or both be Rondo3 processors or can be a combination of one Sonnet2 and one Rondo3.

 

The only way to know if your CI center is a two processor center is to ask your CI audiologist.  Some large CI centers are one processor centers and some small CI centers are two processor centers so CI center size does not determine this.  It is a policy of each CI center.

[Bryan]

Thanks again. I have not heard any of that I guess. I will be going tomorrow for my appointment and that will be great questions that I can ask that I wouldn't have known of

[Mary Beth]

@Bryan

It is quite overwhelming at first for all of us.  We understand.

Keep asking questions.  We are here to help each other.

[Enegra]

Hey @Bryan! There are sure a lot of things to consider when deciding for a CI. As for questions asked to a surgeon, I have once seen a compiled list like this:
 

Quote

 

Questions to ask your surgeon:

How many cochlear implant surgeries have you performed using __ (AB, Cochlear, Med El)?

Do you have a preference between different manufacturers?  Why? (they should NOT disclose any bias)

How many revisions have you performed, and were they as successful as the original?

What does a scar typically look like after surgery?

How do you decide on the location of magnet placement under the skin?

Are you able to preserve any natural hearing when you do CI surgery?

What does the timeline on surgery day look like?

Do you use AIM technology for AB surgeries?

How do you know if I am a good candidate for a CI?

Should I implant just one or both ears? Why?

Will having CI surgery affect my tinnitus or balance?

What are good ways for me to learn to hear/rehab after being activated?

Are there any medical procedures I shouldn’t have with a CI?

When can I exercise and lift things again after surgery?

How many times will I see you after the surgery?

How many times will I see the audiologist after activation?

Can you connect me with another patient who has had each brand of implant I am considering?

Are there any vaccines I should get before being implanted? (Meningitis is common vaccine)

Do you close the surgical area with glue, staples, or stitches? Will I need to return to have those removed?

Do you verify internal placement of implant electrodes with an xray prior to closing up when surgery is completed?

Ask for detailed post op instructions: when can you wash hair, care of incision, pain meds, cup removal, Will you see surgeon for post op checkup?

 

About hard hats, is it possible to wear a slightly looser one with adjustable straps to fasten it? That's what did the trick for me with a bike helmet at least.

[Bryan]

Thanks for the replies and the list will help a lot definitely needed that. As for the bike helmet I'm not sure yet about the hardhat lot more restrictions when work related and I guess the type of work I do  not sure how I'm going to cope with a implant either 

[Andrew42]

@Bryan

This list @Enegrasuggested is frankly, excellent and I hesitate even to suggest anything else. Her first questions are very important for where you have the operation. From the answers your need to interpret which they do more of  and which they prefer and why. My experience is they tend to shy away from direct answers. You can also ask the local manufacturer reps the same questions. I met with both Med-El and Cochlear reps before deciding.

Another area to explore is communications between the implant and a mobile phone, for example. If hard hats are an issue for you, I guess you have a work environment that requires one. How do you handle telephone calls now and how would you handle them with a cochlear implant? You may want to investigate that whole area very carefully.

Good luck. I'm rooting for you.

[Bryan]

Thanks for the reply Andrew. That has been the main concern so far  no one wants to give a direct answer. And what I'm seeing with a hard hat is I'm not sure by OSHA standards that you can legally wear a standard hard  with a implant unless the coil is placed higher or lower than what I'm thinking that's going to be a question today for the doctor I hope . I don't want to get myself in a situation where I can't do my job legally and safely. Maybe today my new doctor will answer some of my concerns 

[Jared Charney]

Good morning @BryanI'm so sorry to hear what you are going through. Almost six years ago I lost all hearing in my right ear and also left with a tinnitus that plagued me beyond anything I was equipped to handle. Much of my work is in loud environments and instead of my tinnitus getting masked in these situations it would only get worse to the point that I was essentially deaf. About a year and a half ago I got my CI in Boston and even though the tinnitus was worse for that initial month afterwards (as I waited to heal) the moment they placed the outer processor on the tinnitus disappeared. It has reopened so much of my just not hearing the tinnitus. I still hear it if I take it off to shower, etc. but it no longer holds anything over me (like killing a parasite) as I know for nearly 95 percent of my waking hours it can't harm me. I wanted to also answer your question about hard hats: bec. of the type of photography I do I have indeed been in several situations where I have worn a hard hat. Once most recently at a shipyard in Boston. I wore exactly what everyone else wore and I didn't experience any issues w/my Sonnet 2. I don't know how well it would work w/the Rondo 3 but I feel like the Sonnet 2 is a good candidate between the anchor and of course being magnetized. It took me maybe about a year but another thing I love about getting 2 different processors: I use the Sonnet 2 up until bed time and I now sleep (it took my practice bec. I can't lay on my right side really with the processor) w/the Rondo 3 on to not hear the tinnitus. LMK if this helps or if you have any more questions and best of luck!

[Bryan]

Thanks Jared it's good to hear from someone with what sound's like exactly what I'm going thru .the tinnitus seems to be progressing daily Im not sure how to deal with with it's about to the point of not being able to hear or make out any speech or many sounds like i could when this started.thanks for the hard hat info I'll check in on the different types as I get closer to that. I guess I'm just shocked that there's not anymore info out there on this subject when i first started looking i assumed that I could find about what ever I could come up with and especially with work related safety equipment anyway thanks for the replies so far it has been a great help

 

[Jared Charney]

@Bryankeep the questions coming. Probably the biggest deciding factor for me was watching a report that was done at the University of North Carolina with people who had single-sided deafness and tinnitus And all of the subjects were greatly benefited not just with better hearing but with relief from tinnitus I do think that the helmets will be fine again I’ve used them several times with no issues

[Roy]

As someone who’s worked hard-hat jobs and worn CI processors - just never at the same time - I can see the issue with the headband overlapping the coil.

So here’s another idea: how about a different kind of hard hat? There are now high-density foam models that look superior to the traditional kind, and could have a small pocket carved out of the foam to accommodate the coil without compromising safety. I’d think your employer could (hopefully) approve the switch. 

[David Babs]

Super helpful replies everyone, and especially that list of questions to ask from Enegra. I have a CI consult coming up ina week and really never considered about 80% of those questions you recommend. Many thanks to all and all the best to you Bryan for a good outcome!

[Bryan]

Thanks for the replies . So far about all I know about the hard hat issues is if the manufacturer of the hard hat doesn't specify any certain modification then by OSHA standards it is and you and company are invalidation of hard hat use ( I didn't realize it till now but even wearing a hat or cold weather gear under a hard is not acceptable unless the manufacturer of the hard hat specifies it) so im still on a search for more answers. Thanks so much 

[Dianna]

2 hours ago, David Babs said:

Super helpful replies everyone, and especially that list of questions to ask from Enegra. I have a CI consult coming up ina week and really never considered about 80% of those questions you recommend. Many thanks to all and all the best to you Bryan for a good outcome!

Welcome david!

If you have time there are really really good tags in here for research. I cant tell you the hours i spent researching ci and ci mfg on the internet before coosing. I had a few hours with cochlear america along with a zoom meeting with peers. I chose music as number 2 importance so without choosing my center gave me sonnet2 eas. Ive been activated 11 months!

I particularly like hearpeers because of medels involvement. We can ask moderator questions and get answers and suggestions. There are many many stories and articles here for you!

Welcome and excited for you!

[David Babs]

Thank you Dianna, that is super helpful and encouraging to hear. I feel like CI is going to be an integral part of my future but I am trying to work through some chronic pain issues at the same time and it's quite the maze... It's debilitatingly painful at times and some evidence is suggesting that my hearing loss could be connected to the chronic pain via an autoimmune disorder, e.g. RA or Lupus? (Condition is called AIED, or Autoimmune Inner Ear Disease) So I will stay in touch with the community as I learn more but again, many thanks for taking the time as it's so great to share with others that know what you are going through on some level.   

Thank you for taking the time,

David