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Ivana Marinac

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Posts posted by Ivana Marinac


  1. On 11/13/2018 at 9:41 PM, Debbie from US said:

    Ivana,

    Thank you for your response. It is nice to know that Dr. Tucci is considered a giant in the world of implants! I knew she had a good reputation, but didn’t realize she was known internationally. I am happy to know that I have placed myself in very good hands!

    I know that the CI is being done in the US for unilateral loss, but it is  considered experimental and is not approved by the FDA for SSD.  The BB just recently received FDA approval in the US, even tho you’ve had it in Europe for a number of years. So it may be some time before the CI is more commonly used for those suffering with SSD here.  The FDA can be very slow to give approvals, which in many instances is a good thing, but not always. 

    I think the CI may be used more often in children here as an aid in speech development. That’s just a guess based on some things I’ve read so others may have more accurate information.  But I actually mentioned to Dr. Tucci that I had read about CI being used for SSD and she shook her head and told me I would not want to have that.  I took her to mean that she felt the BB could be as helpful for me without such an involved surgery and rehabilitation. 

    It is good to know that you have had a good result with the BB, even tho your loss was of a different type than my own. The audiologist told me that the BAHA gave better results to those with conductive loss rather than SNL. But I am choosing to be optimistic about what my result will be with the BB. I am sure it will at least be better than the CROS aid that I tried and hopefully a lot better!

    Thanks again for your input and good wishes. I will update you all as I continue on this journey.

    Debbie

    Hi Debbie once again,

    yes, Dr. Tucci is long in a business this gave her opportunity to track the advancement for decades and Duke is awesome institution.

    That being said, I have gad a rare opportunity to hear an European Goliath - Prof. Fraysee defending the line: CROS, BAHA .... and eventually CI. But, partially my participation in various groups is to gain knowledge and observations from much bigger pool than my patient base could ever be.

    Not linked with your story, but I defended my right fir bilateral hearing against another giant who made career in a field if unilateral conductive hearing loss thinking that he will understand me before everybody else. Oh boy, what a surprise but I’ve believed in my opinion and it stoid against the opinion people who were never in my shoes.

    Ok, administration is totally different thing - that’s reality I can not conquer with romantic but there is a line of people who use a CI unilaterally and thinks about it as a touchdown. 

    Lets not end with negative thoughts, BB will definitely give you oart of you’re missing, just - thruth is deserved to be told as well as the observation that a CI is not a toy, although hard work give results. 


  2. On 11/13/2018 at 1:03 PM, funky said:

    Oh, and another question maybe you can answer. I can hear noticably better with my left ear when I hold my nose and blow, like when you're trying to equalize the pressure when flying. If I blow pretty hard, but not so hard that air passes through the eardrum. I guess maybe the eardrum is a little loose or flappy normally, and when I apply pressure it tightens up. I do it sometimes when I listen to Beethoven and the music peaks :D

    Anyway, does that mean that maybe my eardrum could be "tightened up" surgically?

    It’s a typical situation with people who have a mixed hearing loss - you tend to insuflate E. tube and middle ear, maybe some effusion there accumulate through years and it improves sound transfer. 

    Eardrum can be repaired in any way, even the ossicle chain can be build out of artificial prosthesis, but - hearing cells (if this is a real situation at the audiogram) are nit vampires or zombies: once heavy damaged - can’t be replaced. Only partially substituted with internal cochlea electrode which would bypass them.


  3. On 11/13/2018 at 12:27 PM, funky said:

    Thanks for replying! I had a lot of surgeries when I was young, because of repeated infections. I'm not sure what they did, but they made me a new eardrum made of skin taken from behind my ear, I think. There's a hole in it but apparently it's nothing they want to try and fix (I can blow air right through it). I'm pretty sure they removed part of the bones in the middle ear. I hear mostly bass on that ear (left) and it's pretty useless for hearing speech. I *think* the cochlea is pretty much intact. Regular hearing aids haven't been of much help, especially with background noise which is when I have the most trouble hearing people.

    I'll be trying a Ponto headband for a month or so. I tried it on for a few minutes, and it seemed to work OK but the sounds seemed to be in the center of my skull. It obviously wasn't programmed for me, but it made me wonder if the sounds would just be louder but harder to hear where they're coming from. But maybe that'll get better with time?

    I'll see if I can upload an image of my last audiogram. I think the audiogram is for the headphone test. They usually do a test with a bone conductor thing too.

    edit: I found this pdf that explains audiograms: https://www.chimehealth.co.uk/web/data/audiogram-hearing-loss-examples-2.pdf

    If my translation from Norwegian is correct, this is from the last doctor's note: On the left side mixed mechanical [I suppose that means conductive] and neurogenic loss from bass to middle frequencies with PTA 35 dB. More pronounced treble loss below 80 dB. Audiogram shows good hearing on the right side below 20 dB hearing threshold at all frequencies execpt 25 dB 3000 Hz.

    I think I can get either the Ponto or the BB. I don't think they have Cochlear aids. I don't know if Soundbridge is an option, but I guess that would be better for directional hearing since it doesn't send the sound through the whole skull?

    Thanks again!

     

    audiogram.png

     

    Hi Funky,

    they tried to repair your eardrum but not from skin.

    Actually, watching your audiogram reveals that your hearing on your left ear is pretty much decent up to 2 kHz, but what strucked ny mind is your hearing loss further which is quite significant, at 4 kHz it suits into the category of deafness. So, you’re wrong - part of your cochlea or outer hearing cells hardly work in one significant area, so there is a disproportional hearing due to the insufficient higher band - we’ll get back to this stuff.

    Your audiogram looks like a typical hearing loss threshold caused by acoustic trauma, not much as the result of chronic otitis media on that side.

    Looking at your situation, maybe your test with Ponto revealed you thruth - bone conduction nor active middle ear implant will not regain your wish for full directionality; only one implant can do with your type of hearing loss - EAS because the rest of threshold is more or less functional. 

    Soundbridge do well up to 80 dB but no more than of that, and you have a significant loss between 3 and 8 kHz.

    Higher freqencies tend to be more directional and therefore help with a sound localisation. Physics behind it is described here: https://knowingneurons.com/2013/03/15/how-does-the-brain-locate-sound-sources/

     

     


  4. 11 hours ago, funky said:

    Hi, I'm a candidate for an implant. I think the choices are between Cochlear Baha, Oticon Ponto and the Bonebridge. As far as I can tell, the Bonebridge would be the safest, and I suspect it can produce louder or clearer sound as well since the amplifier/vibrator is under the skin.

    One thing I haven't figured out yet, though, is whether the effect will be louder on the side it's on. I'm not completely deaf on my left ear and I think my cochlea is pretty much intact. But will the sound travelling through bone be equally strong on both sides, or will there be a sense of direction?

    Hello Funky!

    can you be more specific about the type of your hearing loss? Sensorineural, conductive or mixed? Also, if you know any value of your hearing loss threshold - it would help enormously to tailor the best answer for you.

    in short, don’t worry - it is even louder than it is in a technical details of the device. There said up to 45dB, I have used it for a five full years with a bilateral conductive hearing loss of 65dB average.

    you don’t worry it will be louder since fittings are superb, also after a period of getting use - your brain will adapt both on the quality of sound as well as on the intensity.

    if you have a healthy other ear and without significant damage of the ear which is intended for an implantation - yes, you will be able to tegain directionality. 

    If the other ear is damaged, or this is has a dignose of single-sided deafness - than no: one side-hearing is not enough. 


  5. @Debbie from US

    hello again, 

    pardon me for not involving myself before for a response.....

    Mary Beth was on the path I wanted to explain, you are a classic (up to now) patient for a single CI which would really revive your hearing on the affected side.

    I stand behind this although Prof.Tucci is on the other side - she’s really a giant in this world of implant technology. 

    But, I have seen people fron the U.S. getting unilateral CI - I don’t quite understand your conditions but I have taught that everything is not possible only - if it is not tried.

    Regarding me, I am “the expert” because I wear them now more than 5 years. My professional skills (I am an ENT in Europe) allow me to understand the problem from the scientific and health side, but financial part is pretty cloudy for me.

    My indication for the implantation was a classic conductive hearing loss. Regarding you, there is no doubt you will have certain benefits, although I am known for “chasing the stars” so I always prefer the best possible, not the best accessible solution for a patient.

    Good luck - please let us now a out your experiences! 

    If there is anyhow I can help..... please, just ask!


  6. Huh, well... Hello Debbie,

    there are few problems before making any conclusion.

    1. How low is your hearing threshold at the affected ear?

    2. Are your symptoms yet visible (and hearable) at just one ear?

    To make an explanation behind my questions:

    1. A hearing threshold is goong up and down, and we still don’t know how much it will go down in certain presentation.

    2. Meniere could be uni-lateral, but also there are very often bilateral cases of presentation and, to be honest - these presentations frequently are not synchronous. This mean, at first is affected one ear and then it reveals on the other.

    I am writing this at first to underline the importance of careful evaluation of proper implant in a - measure of time.

    Second, and lighter part of the story:

    depending of how low your hearing threshold is now, you can expect the summation of hearing effects. People who has a really bad hearing loss reported that has certain improvement, especially in loud settings of bars and restaurants.

    If ear is not deaf 100% you can have the ability of direction also.

    From the aspect of difference between BAHA and Bonebridge - although I was not given a choice, I would choose Bonebridge again simply because I have never had any side-effect common much frequently (since with BB it is 0%) with BAHA: in situ infection, sticking out of head, urge to be careful with sport activities, no water-activities with BAHA (there’s no water-resistant cover on the market). 

    If there are further questions - please, just ask! ??


  7. On 10/21/2018 at 3:42 PM, Kara of Canada said:

    SO @Mary Beth you got to meet @Ivana Marinac! How was it? I would love to meet you both! 

    It was incredible - like you dream something and than puf! It happens!

    To meet a person in live with whom you’ve exchanged so many HP and PM messages and - you’ve never seen each other... - Just imagine....

    it was my privilege and honour to meet you, Mary Beth!


  8. Hello Gang ?

    dear Loresh - don’t take surgery as something bad, actually the Bonebridge has least side-effects from all bone-conduction implants/devices (BCI/D).

    On the other side, Adhear is something what could be tested almost effortlessly.

    To mix the story additionally- none BCD Sounds equally implant vs. non implanted situation. The implanted sotuation was always better.

    Usual experiences of people all around say that they benefit from a device on the affected hearing. Hard to explain why if one cochlea or nerve is dead and the contralateral hearing is perfect....

     


  9. Unfortunately - I didn’t.

    of course it can.

    I am still not familiar regarding the directionality however.

    Researches shown that Bonebridge does not disturb it, but Soundbridge might. Conclusions are based on long-term work of German scientists, e.g. Dr. Frenzel. 


  10. 9 hours ago, Hils27 said:

    Hi Mary Beth
    Thank you - there is a loop on the Minitec but the sound is nowhere near as good as it is with my hearing aid. I use the loop at home for television and also in public buildings. I can carry on using my hearing aid with the loop and APs when necessary so it's not really too much of an issue  - I just like to turn off one of them but that's my own peculiar habit and I will have to get around it!

    I'm more concerned with the echoing sound really. Thank you for getting back to me. Hils27

    This doesn’t sound good - either your processor is a problematic part, either I would advise checking on how your implant stays in its bed.

    Sound should be cristal clear, not nearly having these problems. 

    You shouldn’t have problem regarding adapting, esoecially if your hearing aud gives you a more superior quality. The impant is nearer than the aid so - there shouldn’t be such differences...

     


  11. 19 hours ago, Mary Beth said:

    @Ivana Marinac

    Do Sambas have telecoil?

     

    I read that the Siemens miniTEK has telecoil but it needs to be turned on by your audiologist.  I’m wondering if that is how Samba users access looped theaters?

    Yes, and yes!

    Nothing without the audiologist and - a special wire for it.

    There is no looped theatres in Croatia and I do not really need it so I’ve never asked for it.

    However, I could imagine that sound in my head: cristal clear without any interference...


  12. 4 hours ago, Hils27 said:

    Hi Ivana
    Thank you for your reply.
    I was issued with the samba processors last year but I didn't get on with them so I went back to the Amande - now I have no choice as the Amande will be discontinued. I changed without difficulty to the Amande from the previous AP. In the last thirty years I have adapted to new hearing aids and in the last ten years to various processors. I still use a hearing aid for the loop as I use the loop a lot and I find it an advantage because I then have natural sound coming through both the APs and the loop sound coming into my ear - like having three ears! I liked having the control settings on the actual Amande processor rather than on remote because sometimes I like to change the setting on just one ear. Very difficult to do with the remote as it tends to change both processors together. I guess I will have to get used to it.
    However,  the echo sound concerns me more and that is why I wondered if anyone else had the same problem. I have had an audio speech test in the past but I wasn't given one on this occasion.
    I have a sensorineural hearing loss in both ears - the loss is virtually identical. 
    They have been very helpful in London at the hospital and I'm sure we will get it sorted out eventually. Hils27
     

    Well Hils27,

    I advise you to ask for a free-field tonal audiogram - my clinical engineer direct from the MedEL says that’s the best way to make fine tunning of your processors.

    Echo can be a problem in the beginning of using of new processors.

    if you get Siemens miniTek you don’t need to have a remote control. There is also a mobile phone program which do basically same: change programs and turn up or turn down volume.

    If you put miniTek or remote in a mid line you control both processors; if you want to control them separately, you need to move cliser miniTek to the side where the processor you want to control - is. 

    It’s pretty easy and convenient to use it.

    I find Samba better than Amade because sound quality is much better, fine structure is much more smooth... there are more channels in Samba. 


  13. Hello folks,

    to finally drop in as I have promised to Mary who signaled me to pm to revive me from the Sleeping Beauty mode.

    Let’s work - not making excuses...

    At first, @Hils27 Before Samba, the actual processor was Amade: you must thought on that when you mentioned VS, because the VS is the whole system: outer and inner part, but Samba and amade are - the outer.

    Secondly, using of remote control when you have two implants is that you put it in the median line, right beneath the chin. Doing like this you can navigate with both Sambas at the same time.

    Regarding echoing, it’s almost always the matter of the proper fitting. Did you test your Sambas in the free field speech audiometry.


  14. There was also a study where Med-EL included patients into a study with Soundbridge, another interesting active middle ear implant.

    a difference is pretty evident, Baha is on the abutment (magnetic plate version I do not recommend) and Bonebridge is totally invisible, implanted into a temporal bone.

    really don't know what are plans with BB, but there is a review where it was found that between all BC implants, BB has least side-effects, skin or device malfunction.

    I am pretty sad that it is not advertised more. People usually refuse it because of its size. On the other side, datas show unparalled advantage regarding at least 2 characteristics.

    regarding your  cousin, he won't make a mistake even woth BAHA although it is greater pain in the ass to maintain the implant position. Beside Cochlear there is also Oticon's version of BAHA - he should test both versions.

    In my opinion, BAHA was a great improvement when it has shown up - but test of time (40 years) has to offer us an advancement in this field. I see it in BB, believed enough to agree with the implantation in time when it was not clear whether it will stand against a test of time. Six years on the market and two significant chatacteristics for patients - priceless. 


  15. Hi @Mary Featherston,

    I use regularly on a daily basis Bonebridge since I was a bit reluctant toward the quality of BAHA BP100 when I have tried it several years before the BB.

    As an active person who does a lot of sport, I was reluctant toward the idea of having the abutment system.

    In the meantime, I have received a Bonebridge and could not be happier and satisfied both with the quality of sound but also not having any kind of usual issue with BAHA system. However, BAHA was and still is a valuable principle because it has learned the scientific community the value of the osseointegration process as well as new pathways of spreading bone conduction sound.

    I have tried Adhear, and as you told - it is a valuable alternative to bone conduction systems since they need to be implanted under general or local anesthesia with postop issues, at least in your mind. Having said that, I have to underline that the sound quality is different - not worse but more like the powered version of hearing aid. Much more powered. 

    Yet, it catches practically everything and it requires a user to behave a lot more active during differing the sound signal. With my BB, I do not need to do that - as my local bank says: We offers, you just live! ;)

    Of course, I haven`t worn it for a longer period of time, perhaps I would adjust, perhaps not after having the BB experience. But it is really valuable alternative toward the necessity of having a surgery as well the fact that children might not be suitable or they become suitable to have an implantation after becoming 5 years old. Hearing pathways are more prone to develop since the day 1 up to two years old. At least, developing a binaural hearing processing. 


  16. Unfortunately, I do not remember. I have never saved it because it is not important to me. But some people provided it in the FB unofficial Med-EL group as well as in that group where people share more technical details. I have reminded that link when users in the U.S. still had not activated 2nd microphone.


  17. Our greatest enemies actually or as Robert Frost has written: "The woods are lovely, dark and deep..."

    Find my pockets like that and always ignore them as the storage option for my Samba: it can be placed only at my direct eye-contact or on my head. When I make something else, I feel a bit distressed and feel the urge to correct my previous move...

     


  18. Yes, Symphony Nr. VII, Part II is my favorite music piece.

     

     

    A striking fact for the eye: by listening to his pieces a listener can track how his hearing loss developed and how it has, finally, deteriorate. His, the most erratic music pieces were written when he could hear barely or even - nothing. 


  19. On 03/02/2018 at 5:14 PM, Kara of Canada said:

    Hi @Ivana Marinac my surgeon said the exact same thing since he had a student with him during my exam. That children need to be bilateral. He said also about my last surgery this time he’ll be more cautious and make a smaller hole to avoid the brain thing! Also there are no anatomical anomalies on the left side so he is comfortable to go ahead. 

    We have passed a long road to come up to this level of knowledge but all newest research tells the same conclusion. The earliest possible with less as possible help from a side. 

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