Immediate Post Implant

[Andrew42]

I was having technical issues during the Forum today. However, regarding immediate post op advice, I would share what I was advised to do. I spent the night after implant in hospital where I was strongly advised to sleep in a much more upright position for two or three days. Luckily my bed at home is easily adjustable. It was very good advice.

[Mary Beth]

@JackieB and @ERW

Here is a CI surgery experience topic.  Feel free to ask questions.

I believe @Joan @Kylie @Mary G. Weaver @Mary Jo Strickland

also had pointers/experiences to share.

[Joan]

@JackieB  @ERW

Like @Andrew42 I was kept in the hospital overnight for observation (I lived 4 hours away) after each implant surgery (they were seven months apart) and slept with my head elevated. When I got home I slept in my recliner for 2-3 nights. I had no balance or eating issues after either surgery. I didn’t have any dizziness or vertigo after my first surgery. However three days after my second surgery I had significant vertigo that lasted about three days. I also experienced the “ear crystals” problem in that ear that @JackieB mentioned, which disappeared after some vestibular therapy.

Wishing all the best to both of you!

[JackieB]

Hello all, I have reviewed research, youtubes and MEDEL promotional videos and have a remaining few questions as to benefits of surgery for my situation. Prior to sudden hearing loss in right ear last November, I had been using Phonak hearing aids for several years for moderate age-related hearing loss. As of now, I have a CROS hearing aid in the deaf ear. Losses are still apparent, enough to warrant this surgery for a CI and my surgeon says I'm an excellent candidate. Surgery is next month.  Questions: Was hearing in non-implanted ear impacted at all from surgery? How is the "blending" process going between sound wave ear and electrical impulse ear? Was tinnitus improved if anyone suffered with that? Any regrets? Or any other questions that I don't know to ask as of yet? 

-Jackie B

[Mary Beth]

@JackieB

I had used a BiCROS system for years.  Hearing with two separate ears is sooo much better!

@Kylie can answer your question about hearing from an acoustic ear and a CI ear over time.

Having CI surgery on one ear has no impact on the hearing in the other ear.

I experienced tinnitus for decades and for me it is soooo much better while wearing my CI processors.  I don’t notice it at all.  It’s there when I remove my processor before bed but much much quieter than before.  However after activation, I did experience a temporary increase in tinnitus with the processor off.  That vanished quickly.

 

No regrets at all.  Life changing tech.

Here is a link to my CI experience if you are interested.

 

[Lauren]

@JackieB @ERW

Both my surgeries were at a surgery center as opposed to a hospital, but both experiences were totally different. Surgery center is ~30 minutes away so I went home both times.

My left side in June 2021 was surgery #12 for me and was very easy. I had mild-moderate dizziness that resolved within two weeks, when the swelling and inflammation cleared up. Activation was two weeks after. 

For my right side November 2022 it was surgery #14 (squeezed in major surgery between) and I’d asked my surgeon to move the left side up as the internal implant slid down almost immediately after it was initially placed. So the plan was: implant the right and scoot the left side up. Right side was textbook, left went poorly and ended up being explanted and re-implanted. Surprise bilateral surgery. I think I traumatized the surgeon (he kept texting me asking for updates) but I was able to console him since it wasn’t my first traumatized surgeon. 😁  He actually called my audiologist and made my activation appointment for me, 5 days post op. Initial plan was to wait 4 weeks but my wonderful audiologist shuffled her busy schedule around when the surgeon called.

I couldn’t walk at all for about two weeks and still have lingering dizziness. I’ve been doing vestibular therapy since December and finally plateaued so getting cycled out. Still have occasional “hiccups” in balance but it’s manageable.

As for tinnitus, I had it before being implanted and it’s still there post-implant but VASTLY improved and not nearly as noticeable. 

[Tim]

I was implanted and activated in January. 

I'm lucky to live just one mile as the crow flies from the hospital and clinic where I have my Audi appointments, surgery, etc.

At home I was able to avoid the heavy pain relievers medicines and stick with the non-steroidal anti-inflammatories. That might have helped avoid nausea too.

My throat was hurting for around 3 days due to the breathing tube under anesthesia.  I don't remember having it last that long for previous surgeries.  Stock up on appropriate comfort foods and drinks in advance.  

Having a good "lazy boy" recliner chair is nice. If you don't have one and don't want one long term, you could get one delivered from a rental place or medical supply service.  (My mother-in-law has done this for certain places she visits.)  Another option is a used furniture place, maybe even a Goodwill store.

Like others are noting, my tinnitus is much better, maybe gone, after activation.  This is not a definite result and the research literature notes that in a small fraction of cases it may get worse.  Generally it seems to get better such that it has even been cited as a primary driver for implantation for incapacitating tinnitus.  (My tinnitus was annoying and 24x7 but by no means debilitating.)

Removing the arm on a pair of eyeglasses in advance is really helpful as mentioned during the Google Meet.  

I didn't have issues with dizziness or vertigo after surgery but about 3 months later I had couple of bouts of BPPV.  

Items for before implantation

A question for the surgeon before surgery might be to ask about facial nerve monitoring during the surgery.  (This may be standard practice now but good to ask.)  Also, facial nerve monitoring might be done by a third party service that may result in a surprise bill in the crazy US health care system.  I got a notice in the mail after the surgery warning me that I might get a surprise bill from the third party facial nerve monitoring service that they might be considered out of network but don't remember getting any separate bill from them.

Could ask about having a Med-El Otoplan analysis of electrode length from the CT image.  That information enabled my surgeon to select the 31.5 mm electrode instead of the 28 mm that he had originally planned to use.

Could ask about getting a post-implant CT and Med-El Otoplan interpretation for electrode location. In my case, the clinic said insurance would likely not approve an additional CT image so it could be out of pocket and therefore pricy.  Kind of wish that I had pushed more for this though - after all I blew past my annual deductibles in the first two weeks of the year!

 

 

[JackieB]

Thank you all for your comments..and for the forum/Googlemeets. Mary Beth, thank you so much for your moderation skills.  Even though individual outcomes vary somewhat, it is very helpful and reassuring to get a sense of others' experiences.  Tim:  Do you continue to have BPPV? I have a pre-op consult coming up in a couple of weeks and will ask about facial monitoring and Otoplan analysis. NC has a "no surprises" law to help protect from unexpected hospital bills, but still. Ugh. Also, I'm unclear - what would be the purpose of the post-implant CT for electrode location? For optimizing mapping?  To all: Given our upgrade conversation today, how often are upgrades offered/needed? 

[Mary Beth]

@JackieB

A post op CT can be sent to Med-El US by your surgeon and they will use their OTOPLAN to determine the frequencies that match the exact location of where each electrode rests in your cochlea.  Then our clinical audiologists can choose to use that frequency allocation when creating a MAP.  This is what @Mary Jo Strickland referred to today. Med-El calls this anatomy based fitting (ABF).  @Lauren is awaiting the frequency allocation from her post op CT.  @Roy has participated and continues to participate in research at UNC that also uses post op imaging to assign electrode frequencies.  Some CI users have expressed interest in using a post op CT for anatomy based fitting but their surgeons have not deemed a post op CT scan necessary.

 

@Joan experience with upgrading was so fast and so easy.  It really depends a lot on your individual insurance.

 

Medicare deems CI processors (which all insurances consider to be durable medical equipment) to have a service life of 5 years.  Many commercial insurance plans also use that 5 year mark.  Other commercial insurance plans will not replace processors unless the processor is beyond the ability to be repaired.  That can happen when a CI company announces end of service life for a processor model- no service or parts available after a certain date.

In the US, right now Med-El has ended service on Rondo 1 and OPUS 2 processors.

Rondo 2, Rondo 3, Sonnet 1 and Sonnet 2 are able to have service and parts.

Our audiologists can continue to program processors even past the announced end of service life.  So in the US, Rondo 1 and OPUS 2 processors can still be programmed.

Some CI users are eager to upgrade every 5 years and others who like their present processors are sad when end of service life occurs.  So this varies and is a personal preference.

Once in a rare while someone will have an insurance plan that covers processors sooner than 5 years.  But this seems to be very rare.

[JackieB]

I see! I’m counting on my surgeon to be knowledgeable on this since he was part of the Med-El trained group at UNC. Will definitely ask-

[Lauren]

@Mary Beth I tried asking my Clinical Account Manager what the status is on Friday, hoping to hear something in advanced of my next MAP on Tuesday (June 13). At the least I’ll find something out Tuesday. I feel like it’s been an abnormally long time waiting. CT was done end of April and my audiologist sent the files to US Med-El May 2nd. 

[Mary Beth]

@Lauren

I hope your audiologist can find something out before your appt 

[Kylie]

Regarding the two ears - I certainly found at first that the two sides were very different, one familiar and one electronic. It had the effect of making everything sound like there was a layering of different versions of sounds. But it wasn't unbearable or overly distracting. Just weird. Then exactly as I was told to expect, with time and practise, the sounds slowly merged and now it is one rich stereo sound. The amazing brain figures it out!

[ERW]

@Andrew42 @Joan @Lauren @Tim @Kylie

Thank you all for relating your experiences and post-op tips! I do appreciate your time in responding and writing things down to implement
 

It is also good to know to be patient re: Otoplan MAPping. I am super excited and fascinated by Otoplan. I had the initial CT scan last week and have the post-op one a week after surgery. 
 

@Kylie When you were training your CI side, would you just stream sound to it alone, practice with both ears, or plug the “good” ear while listening with the CI?

[Mary Beth]

I look forward to following your journey @ERW

[Kylie]

I never 'plugged' the good ear as I found it not sufficient to block sound.

I did dedicated practice time with processor connected via cable or audiostream to a device.

Then I did my daily listening in real situations just with processor and natural heading combined. As in, just wearing my processor all day every day.

Now to listen for pleasure I can use audiostream or wear headphones over both ears or wear an earbud in my natural ear. I try to change it up all the time just to keep things interesting!

[ERW]

@Mary Beth Thank you! I appreciate learning about others’ journeys as well.

@Kylie Thank you again for the info.  It is amazing how well our brains adapt! 

[Tim]

@JackieB If you are wearing hearing aids already, then there is no need to plug the ears - just go without the hearing aids.  I have normal hearing in my non-implanted ear so I'm singled-sided deaf (SSD).  Plugging in some way means that I can get my CI side to do a little more of the work. Generally maybe not as helpful for rehab as direct streaming to just the CI side but still good rehab.

As for "fusing" the sound from the two sides - I don't really "notice" much of a difference now while wearing it.  (5 months post-op).  Hearing all the birds in the yard, I have a much better sense of directionality from where they are chirping. 

I know that my hearing on my CI directly is still very different from my good ear when streaming.  In the first few weeks after activation people sounded like squawking chickens rather than words.  Now it sounds more like talking with a person at an old fashioned drive ordering speaker.  Some distortion but I can make out most words.  Struggle over some sound pairs (ex.  m and n; d and t) but with rehab, things are always improving and I'm looking forward to another re-map this Summer.  Again, I don't even notice the distorted sound when not streaming but I know my CI is providing benefit.  Even my wife and colleagues noticed how I don't do the SSD head turn now. 

 

 

[JackieB]

@Tim "old fashioned drive ordering speaker", yes, I get exactly what you're saying- what an apt description! Thank you. I found out that my surgeon will do an Otoplan ABP, also, yay. 

 

[Kim W]

On 6/11/2023 at 11:41 AM, JackieB said:

Hello all, I have reviewed research, youtubes and MEDEL promotional videos and have a remaining few questions as to benefits of surgery for my situation. Prior to sudden hearing loss in right ear last November, I had been using Phonak hearing aids for several years for moderate age-related hearing loss. As of now, I have a CROS hearing aid in the deaf ear. Losses are still apparent, enough to warrant this surgery for a CI and my surgeon says I'm an excellent candidate. Surgery is next month.  Questions: Was hearing in non-implanted ear impacted at all from surgery? How is the "blending" process going between sound wave ear and electrical impulse ear? Was tinnitus improved if anyone suffered with that? Any regrets? Or any other questions that I don't know to ask as of yet? 

-Jackie B

Hi Jackie, I am three weeks post activation. I have single-sided deafness.  The day of activation, I found it beneficial to have the CI.  Walking out of the hospital after seeing the audiologist, my husband was on the implant side, and I could understand what he was saying. It was a combination of the implant and my good ear, but he never would have walked on that side of me prior to the implant. it is still taking time and training to help that ear understand more, but so far it is worlds better than a hearing aid. 
 

Kim

[JackieB]

Thanks, Kim. That must have been a great moment.  Based on everything I've come to understand, I am committed to the surgery and to the rehab, however long it takes. It sounds like the side effects experienced are well worth the long term outcome for most. Just wish I knew how my own individual chemistry is going to respond to this. I enjoy knowing what to expect with this kind of thing, so this forum is very helpful. Will go in with faith in the process and in my own capacity to heal and learn. 

[Mary Beth]

@JackieB

Do you prefer to be called Jackie or Jacqueline?  Just want to get it right in any future GoogleMeets.

[JackieB]

Jackie, please. Thanks!

[Heather W]

On 6/11/2023 at 4:47 PM, JackieB said:

I see! I’m counting on my surgeon to be knowledgeable on this since he was part of the Med-El trained group at UNC. Will definitely ask-

Who is your surgeon at UNC @JackieB

[JackieB]

Brendan O’Connell, now with CEENTA in Charlotte.