Anatomy Based Fitting Update

[Lauren]

As of yesterday, Med-El US still hadn’t received the correct file from my surgeon’s office. I did a Hail Mary and texted my surgeon directly since the official channels wasn’t working (for Med-El or myself). Thankfully he was able to get the right file uploaded this AM after reviewing screenshots of explanations to me from my Clinical Account Manager. I let them know that the file was uploaded just to ping them to check for it and Med-El immediately began reviewing it. Finally got some good news. 

Basically, the specific radiology file is large so has to be uploaded to a secure portal that Med-El has and can grant access to clinics. Sharing this information in case it can help someone else. Just depends on being able to communicate with necessary individuals and that’s where the issue was for me. Both my clinics (audiologist and surgeon where I had the CT done) has never worked with this before and that’s what the “hiccup” was about. 

Still, a two hour turnaround is a big ask for Med-El US but they seem confident in their ability to meet the challenging deadline. 

[Mary Beth]

Yay @Lauren

I look forward to reading about your ABF experiences!

[Lauren]

Just left my audiologist and taking my ABF MAP for a test drive. My CAM was available for a video call so stayed with us from start to end to walk my audiologist through the process  

Good news: Med-El said the right side image was perfect, placement perfect, and they were able to get a good MAP set up in a very short two hour turnaround. When I walked in, I asked to make ABF MAPs #3 and #4 to preserve my existing MAP. Five seconds into the ABF MAP I said no need to keep the old MAP in the processors. 

Bad(ish) News: Left side so much scar tissue that a two hour turnaround was not possible and there’s additional analysis needed between the team at Med-El US before they can confidently put together recommended programming. Left side will (🤞) be next week Friday. 

Helpful News: my audiologist was very interested in ABF and between me and one other patient (identity was obscured but they had gone to Durham for a week of Otoplan-ish testing) is going to try to incorporate both ABF and Otoplan into MAPs with the goal being more Otoplan so her patients don’t have to struggle. I recommended her to have the orders for imaging written by the surgeon and sent instead to a nearby Imaging center so the issues I faced with my surgeon’s office (all ridiculous) doesn’t happen to anyone else, ever. The imaging place has done 99% of my imaging and I have NEVER had issues there, plus they’re all strictly radiologists so they know what they are doing.

In hindsight that’s what I should have done, but live and learn I guess. 

[Mary Beth]

@Lauren

exciting!  After a few days with your ABF right MAP please report back and tell us how it compares to your previous right MAP.  What sounds different etc.

[Tim]

@LaurenVery interested in your discussion of the ABF results and impressed that you said just 5 minutes in the ABF seemed so good as to not both with your previous/old (stable?) CI maps - I would have figured it would take longer to adapt. 

I might try asking my Audiologist again about getting a CT scan and ABF.  Blew past all out of pocket deductibles this year with the CI surgery and looking at performance on the apps like Hearoes and WordSuccess, I seem to have stalled out on progress over the last month. (I know improvements slow down over time but it seems flat.)

[Lauren]

@Tim @Mary Beth 

I’ll be able to better tell after next week. My left side is still on the old MAP and right side on ABF MAP so while they are close and blend ok they’re not totally equal. 

I can say this already, I feel like ABF cut out several MAPping appointments of programming tweaks. The initial difference was for the better so it was definitely the right thing to do. 

I’m most anxious about the left side since it’s been struggling coming up on two years as of next week while my right has just taken off just ~7 months in. Ironically that MAP will be a day or two before the left’s two year hearversary. 🥂 

[Heather W]

This is exciting to hear! I go on June 19 for next mapping and end of one year clinical trial to find out if I am ABF or not. I have this on my list of things to discuss with my Audi!

 

[Mary Beth]

@Heather W

That will be an exciting appt.  Keep us posted!

[Dianna]

On 6/13/2023 at 9:21 PM, Heather W said:

This is exciting to hear! I go on June 19 for next mapping and end of one year clinical trial to find out if I am ABF or not. I have this on my list of things to discuss with my Audi!

 

Hiya! I have a two year coming up in aug-sep in my trial. Will ask about ABF, and of course 2nd ear cuz i do prefer ci sound. Thanks for all the info!

[Mary Beth]

@Heather W

Thinking of you today and hoping your appt goes well!

[Lauren]

I’m excited for my appointment tomorrow to (hopefully) wrap up ABF; a little worried about the scar tissue but I’ll find out tomorrow.

The difference between the old MAP (left side) and ABF MAP (right side) was larger than I initially thought in the quiet audiologist office so I’ve been working hard at training my brain. Fingers crossed for a smoother transition tomorrow. 

And, my two year hear-versary for my left side is this Sunday so Fridays appointment couldn’t be better timed.

[Mary Beth]

Good luck @Lauren!  I look forward to your update.

[Lauren]

Just home from my appointment. This MAP (ABF both sides) is very promising. Initial reaction was: less head-cold sounding people to everything and the annoying stuff is more normalized. Now to adjust to it further!

Got surprised to see my CAM and a surgical specialist from Med-El show up for my appointment. Guess they’d come up to educate the surgeon’s office based on my feedback to them, and to sit in on my appointment and help with the MAPs. A trip to Alaska never seems to be turned down by anyone though. 😉

The whole hour was well utilized.

[Mary Beth]

@Lauren

very encouraging!

[Lauren]

@Mary Beth definitely. I’m so glad I pushed for this and even mentioned that. They were glad too. 

Med-El did say that with the read and recommended programming it’s still not a guarantee. Others who have used it have fallen along a spectrum between absolutely loving it and either hating it or the recommendation just not working out for whatever reason.

In the latter case they can still use positioning info to scrutinize and fine-tune either the MAP someone walks in with or make additional tweaks to the ABF-recommended MAP. So regardless of outcome there’s still information gleaned that can help. 

From the excited chatter between my audiologist and CAM, it sounded like as long as there was a good CT imaging it doesn’t matter how long someone’s been implanted or how much scar tissue, though in that case a longer/more involved review period is necessary. Yes the hope is to implement Otoplan right out of the gate but ABF is a viable option for anyone who feels like they’re struggling.

Might take some self-advocacy but my audiologist went from “well we can see if it’s even an option” to “I want to implement this and Otoplan more and by the way will it work with someone implanted years ago because I have someone in mind….”

it was fun hearing more of the research and methodology behind this and the possibilities for CI users now. Also, my audiologist might have just created the eye exam equivalent of CI mapping when we were trying something. She named the possible MAPs “Program One” and “Program Two” and wanted me to tell her if I liked One or Two better. I got into a giggle-fit which confused them then explained that they’d just asked me if I preferred one or two.. one or two… 

[Mary Beth]

@Lauren

 

haha. The eye exam for CI programming.  Very funny!

 

Individualized programming definitely opens up so much potential.  I am thrilled that Med-El now offers OTOPLAN on demand in the US.

[John F]

I actually inquired about ABF at MEEI here since I’ve not heard it mentioned by anybody there.  Promising at least.  What the Audi told me:

 

“I wanted to reach out to our local MED-EL rep to see if this is something we are able to do yet. She said we are hoping to offer it soon, but we are working on getting approval from the hospital's compliance department. So, this isn't something we can do right now, but we should be able to offer this to you in the near future. I was just at a cochlear implant conference and there were a lot of talks about this, so I'm definitely eager to see it firsthand!”

 

 

(I dunno how to put this into a quote box)

[Mary Beth]

@John F

the American Cochlear Implant Alliance conference was held in Dallas the other week.  Med-El presented on OTOPLAN on demand and also had OTOPLAN featured at their booth.

I am excited about individualized medicine and this holds great promise in my opinion.

 

 

[Heather W]

Not my intention to highjack this post, but just a quick update from my one year appointment and end of clinical trial.  I found out that I was programmed as ABF. During booth testing, they tested me using the alternative map, and I performed worse and did not like the sound. My booth scores in quiet went from 4% unaided prior to implantation to 90% with just CI in quiet. I was shocked! I definitely do better in quiet than in noise and better in person than in situations where I cannot see the speaker. But I’m not sure I’m performing at that level in real life! Optimistic for continued gains though. We made more changes to my map. I was told that my thresholds (volume) were significantly above average. Things sound much more comfortable now, but still need to be in more settings to see if I’ve lost some speech intelligibility with the lower volume. I’ll definitely be engaged in map tweaking for longer than the average user I suspect! 
Hope ABF mapping makes a big difference for you Lauren!

[Mary Beth]

@Heather W

which programming did you perform better in…. ABF frequency allocation or the default frequency allocation?

[Heather W]

ABF

[Lauren]

@Heather W I’m glad ABF has helped you!

My audiologist wants to test me about a month out so I’ll have data on just how much it helps me. 

@John F @Mary Beth I’m so glad that Med-El is presenting on Otoplan and getting the word out. My audiologist isn’t affiliated with a hospital so I didn’t face hurdles with that. Only confusion at the surgeons office as it’s a new thing they’d never heard of. Med-El has since educated them on what Otoplan/ABF is.

I’m hoping more and more CI users will be able to try Otoplan/ABF to see if it helps them. 

[Lauren]

Not quite two weeks into ABF but continuing to adjust well. What felt like a subtle difference in the clinic is much larger in daily life. I’d compare it to skipping several levels in Word Success vs going level by level and not being able to pinpoint the differences. My audiologist might have been slowly edging my programming towards this but let me skip ahead a bit.

Not starting totally over from scratch but what took a hit was understanding people if they’re too far away from me, and I briefly lost the ability to understand people over the phone. Found out when I took my first phone call at work and had to run to grab a coworker to help. With practice and work, both are getting better. 

Music: wasn’t expecting anything but did try out some music to see how, if at all, ABF helped. Ended up listening to the same 3-4 songs on repeat for about an hour because it sounded so good. Eventually branched out a little and still struggle if a song is too busy with instruments, but I’ll take any music I can get!

[Kylie]

Terrific start!!!

[Heather W]

This is great news Lauren. I’m still a newbie, only one year in. I know for me that whenever they tweak my map, I am fairly stressed for a few days to a week while my brain adjusts. I’m slowly learning and accepting this as part of the process. Fingers crossed that ABF is the ultimate change you were looking for!!