jadepedro Posted December 7, 2015 Report Share Posted December 7, 2015 Hi everybody! I open this thread to let everybody know about the experience of a bilateral bonebridge implant for a 6 year-old boy. Our story: Our son was born with the staple fixed in both sides that brings his hearing down to around 80db in most frequencies on air conduction, but bone conduction is quite good (around 20 db in most of the frequencies). That makes him an ideal candidate for bone conduction systems. It has taken us 5 years to have the confirmation of the conductive diagnosis and in the meanwhile he has been wearing behind the ear hearing aids that helped him to assist to mainstream school with quite good results. He also uses fm system to compensate noisy situations. Hopefully his hearing will become even better. We will let everybody know about our experiences on our new adventure... Surgery is scheduled for 10th december, so stay tuned! Best regards. Javier Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted December 7, 2015 HearPeers Heroes Report Share Posted December 7, 2015 Welcome Javier, This is very exciting. Please keep us updated and best of luck to your son. Mary Beth Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted December 7, 2015 HearPeers Heroes Report Share Posted December 7, 2015 Wow welcome to our group!! Here at hear peers we will glad to give you as much information as you could desire. Our bone conduction person is Ivana. She will tune in so I am sure. She is one of the group. She will help you out. Good luck with surgery and recovery for your little boy!! It's a bit scary sending your child off t surgery so we will be here waiting to here from you. Take care, Kara Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Sandy Posted December 7, 2015 HearPeers Heroes Report Share Posted December 7, 2015 Hi Javier and welcome. Ivana is our resident expert on bonebridge and she will be able to answer any questions you have. Good luck with your son's surgery and please keep us posted. What is his name? Sandy Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted December 7, 2015 HearPeers Heroes Report Share Posted December 7, 2015 Welcome Javier Please keep us updated on how things are going. Feel free to as as many questions as you would like, also share as much or as little about yourself or your little one as you would like. Looking forward to getting to know you. This is a great community of folks here Adam Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted December 7, 2015 HearPeers Heroes Report Share Posted December 7, 2015 Hello Xavier - welcome to the HP. Yes - although you seem that he made quite nice progress, you'll see what will BB do... Not to mention he'll be bilateral. I am implanted, for now, just one side but this did tremendous progress in my life: speech recognition, music diferentation, the ability to hear more than just one person during a talk... How did you choose a Bonebridge over the Soundbridge where the FMT can be put directly at the round window. This means that more intensity could be reached than with the BB. Quote Link to comment Share on other sites More sharing options...
jadepedro Posted December 7, 2015 Author Report Share Posted December 7, 2015 Hi again! First, thanks to all for your support. I'll be glad to share the news about Diego (our son) with all of you. About how we choose Bonebridge over Soundbrige... well, it was surgeon decision. The first option he explored was an internal prothesis for replacing the entire bone chain. Unfortunately, the facial nerve was in a position that leaves no room for him to operate without compromising a potential facial paralisis. I guess that the abnormal position of the nerve discarded also the Soundbridge. Nevertheless, we are excited about the bonebridge option. As I've said, he is actually doing quite good with the BTE and BoneBridge could raise the good results even more. Not really worried about the surgery, as this is his 7th "match". He was born also with a severe malformation on the guts (now mainly normalized ) that has taken him 5 times to major, massive, high risk and invasive surgery (wow...). 6th was the failed try for the prothesis, so this one is just anecdotical for us... . I have a clear idea that bonebridge hearing will be superior in quality. My only doubt is about if the bonebridge will be able to provide enough power in all the frequencies Diego needs as Fredrik and Knickohr pointed out on another thread. I know this is something the surgeon has already taken into account, but I'll double check with him. And well, we always have the option of going back to BTE. In that case it will just be a matter of a few thousand euros less in my bank account. Ivana, just a few questions: Sorry if you already replied in other thread, had some problems with my account and haven't been able to fully access the forum. Trying to do my homework as fast as possible.... How deep is your hearing loss on bone? How much do the batteries usually last? Did you try the siemens miniTek? If so, what are your impressions about it? Do you know if some kind of water proof protection is available for the samba? Oh... one thing more. To get a quick and dirty test about the ability of Diego of hearing through bone, we bought him bone conduction headphones. Results were good even when the coupling through skin is obviously worst than through bone. He uses to watch his favourite youtube videos with them. Best regards and again, BIG thanks to all of you Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted December 8, 2015 HearPeers Heroes Report Share Posted December 8, 2015 Thanks for sharing. It sounds like a great chance for improved hearing for your son. Keep us posted. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted December 8, 2015 HearPeers Heroes Report Share Posted December 8, 2015 Javier I. An understand about having many surgeries. I had my 39th this past Sept. 19 of them have been brain surgeries. The decision to move forward with CI surgery was easy for me. I have bilateral CIs. Please keep us updated? Adam Quote Link to comment Share on other sites More sharing options...
dsmerritt Posted December 8, 2015 Report Share Posted December 8, 2015 All the best with the surgery! I am scheduled to get a bonebridge on 18 December. Keep us up to date with his progress. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted December 8, 2015 HearPeers Heroes Report Share Posted December 8, 2015 Hi again! First, thanks to all for your support. I'll be glad to share the news about Diego (our son) with all of you. About how we choose Bonebridge over Soundbrige... well, it was surgeon decision. The first option he explored was an internal prothesis for replacing the entire bone chain. Unfortunately, the facial nerve was in a position that leaves no room for him to operate without compromising a potential facial paralisis. I guess that the abnormal position of the nerve discarded also the Soundbridge. Nevertheless, we are excited about the bonebridge option. As I've said, he is actually doing quite good with the BTE and BoneBridge could raise the good results even more. Not really worried about the surgery, as this is his 7th "match". He was born also with a severe malformation on the guts (now mainly normalized ) that has taken him 5 times to major, massive, high risk and invasive surgery (wow...). 6th was the failed try for the prothesis, so this one is just anecdotical for us... . I have a clear idea that bonebridge hearing will be superior in quality. My only doubt is about if the bonebridge will be able to provide enough power in all the frequencies Diego needs as Fredrik and Knickohr pointed out on another thread. I know this is something the surgeon has already taken into account, but I'll double check with him. And well, we always have the option of going back to BTE. In that case it will just be a matter of a few thousand euros less in my bank account. Ivana, just a few questions: Sorry if you already replied in other thread, had some problems with my account and haven't been able to fully access the forum. Trying to do my homework as fast as possible.... How deep is your hearing loss on bone? How much do the batteries usually last? Did you try the siemens miniTek? If so, what are your impressions about it? Do you know if some kind of water proof protection is available for the samba? Oh... one thing more. To get a quick and dirty test about the ability of Diego of hearing through bone, we bought him bone conduction headphones. Results were good even when the coupling through skin is obviously worst than through bone. He uses to watch his favourite youtube videos with them. Best regards and again, BIG thanks to all of you Ok Javier - now I understand the decision. My hearing loss is between 55-65dB which is the maximum taken objectively middle ear anathomy. Possibly a round windows have malformations too but yes - facial nerve is a standard problem. Thinking about your's son hearing loss there could be various reasons but also tonal audiogram is not always objectively 100% correct result. Most likely - it's better just to comfort you. Regarding your's further questions: 2. My batteries lasts around 5 days but thid depends on the intensity, 3. Not yet - I have it but we'll activate it next week; I have heard it's a really extraordinary feeling 4. It's nit official but I got a WaterWear bags for Rondo; although it's a little bit big but it works for me when I run or ride bike. I also have a Sport Headband; if it is ok for Rondo, I guess it should be ok for Samba although yes - if it is not certified for it I guess we could have problem with warranty. 4. Music is pretty much good all the time for a bone-conductivees, for us bigger problem is to discriminate speech in song, or when many people are talking, getting much clearer sound, etc. The Bone conduction is much better in the transmission of the lower frequiences, with BB you get the ability to hear better higher - this enables better discrimination although sometimes bass can be problematic, but nothing what can't be tuned during audiological sessions. Your son had tracheoesophageal fistula? Or what? The BB surgery is not nearly so heavy - it's basically cortical mastoidectomy with implant stabilization. I was 4th day on my 30-kms bike ride Regarding Frederick and Thomas - it is not so simple to compare different audiograms, especially Thomas because his hearing loss due to the chronic middle ear infection. Unfortunately, Frederick got lost but - Samba is much MUCH better than Amade. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted December 8, 2015 HearPeers Heroes Report Share Posted December 8, 2015 It is very difficult to compare even exact same audio gram of two people as their brains might interpret a sounds slightly differently. Also depends on anatamomy..... Correct me if I'm wrong Ivana Quote Link to comment Share on other sites More sharing options...
Knickohr Posted December 8, 2015 Report Share Posted December 8, 2015 How deep is your hearing loss on bone? How much do the batteries usually last? Did you try the siemens miniTek? If so, what are your impressions about it? Do you know if some kind of water proof protection is available for the samba? Hi ! I lost 0 to 20dB BC, but this is no problem. My "complete" hearing loss is about 45 (low) to 75dB (high). It's not linar, I have some peaks. It's the best way to show us a audiogram. My batteries lasts about 10 to 14 days. I'm only wear my BBs outside my home. Yes, I try miniTek, but the connection is very bad. It's better to wait for the next version/upgrade of SAMBA. The only waterproof is, not wearing the BBs Thomas Quote Link to comment Share on other sites More sharing options...
jadepedro Posted December 8, 2015 Author Report Share Posted December 8, 2015 Very interesting feedback. Thanks! Well, on the paper, Diego's worst frequencies on bone conduction are on high frequencies that are around 25-30 db. Surgeon told us that the ear malformation for him is usually acompanied of some kind of facial nerve misplacement, so it was no surprise. About the miniTek, I was asking cause Diego uses a FM system at school, and we need to find the best combination with the new bonebridge. Not sure to which degree he will still depend on fm. He is in a bilingual school and till now he makes extensive use of FM for english, but no so dependant for spanish. We will see... We also need to protect his processors against sweat: a 6-year boy is soooo active.... We will check with Medel. About the other malformations, he was born with ano-rectal atresia, no anal opening, poor pelvis muscles and a section of intestines missing so surgeons streched the remaining intestine, and opened a neo-anus. Usually this kind of malformation comes with a lot of other problems, but fortunately Diego presents no other and now he works fine with the only help of a daily enema. We've been really lucky. Despite of all his adventures, he is a really strong boy, both mentally and phisically. He is anger to get his new "ears" and shows no fear of surgery. Best regards. Javier Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted December 8, 2015 HearPeers Heroes Report Share Posted December 8, 2015 Sounds like a special little guy. Best of luck! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted December 8, 2015 HearPeers Heroes Report Share Posted December 8, 2015 Very special indeed!! The tough ones are always the "fighters". Make it through many procedures etc. No fear of pain etc. Good luck to little Deigo!!! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted December 8, 2015 HearPeers Heroes Report Share Posted December 8, 2015 Very interesting feedback. Thanks! Well, on the paper, Diego's worst frequencies on bone conduction are on high frequencies that are around 25-30 db. Surgeon told us that the ear malformation for him is usually acompanied of some kind of facial nerve misplacement, so it was no surprise. About the miniTek, I was asking cause Diego uses a FM system at school, and we need to find the best combination with the new bonebridge. Not sure to which degree he will still depend on fm. He is in a bilingual school and till now he makes extensive use of FM for english, but no so dependant for spanish. We will see... We also need to protect his processors against sweat: a 6-year boy is soooo active.... We will check with Medel. About the other malformations, he was born with ano-rectal atresia, no anal opening, poor pelvis muscles and a section of intestines missing so surgeons streched the remaining intestine, and opened a neo-anus. Usually this kind of malformation comes with a lot of other problems, but fortunately Diego presents no other and now he works fine with the only help of a daily enema. We've been really lucky. Despite of all his adventures, he is a really strong boy, both mentally and phisically. He is anger to get his new "ears" and shows no fear of surgery. Best regards. Javier Oh - this is some complication as I said. Hope it is ok now? Secondly, you wrote at first post: "Our story: Our son was born with the staple fixed in both sides that brings his hearing down to around 80db in most frequencies on air conduction, but bone conduction is quite good (around 20 db in most of the frequencies). " So, although you are now at 25-30 dB on the higher frequencies you are still within the proposed margins. Regarding the fact of middle ear abnormalities, surgeon from Verona - dr. Coletti is best in that field. He actually showed that it is possible to implant Vibrant Soundbridge on the round window in cases of malformed middle ear. I got the proposition of Waterwear and Sports Headband by the official Med-EL employer. For the miniTek - I guess you should still have to have the experience of BB alone and few tuning sessions and, most likely, you won't need it. I am unilateral user, and during my participation on the scientific congresses or just lectures in a big hall - I don't need them. Who is your surgeon? Does he already have experience with BB? It would be great if he has experience with Soundbridge also. Because of the additional amplification which could be crucial. I can't say for sure, but I don't expect that you'll throw your money through a window... Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted December 8, 2015 HearPeers Heroes Report Share Posted December 8, 2015 It is very difficult to compare even exact same audio gram of two people as their brains might interpret a sounds slightly differently. Also depends on anatamomy..... Correct me if I'm wrong Ivana Yes - it could be the case pretty often. That's why I am not much PRO for comparing audiograms... Quote Link to comment Share on other sites More sharing options...
jadepedro Posted December 9, 2015 Author Report Share Posted December 9, 2015 Hi. Thanks to all for your support, I really apreciate it! Don't worry: Diego is doing really good and he holds a perfectly normal life at 99%. Yes, we are planning wainting to see how Diego develops without the help of fm and then we will decide if we explore the miniTek option or not.Surgeon is Doctor Manrique from Clinica Universitaria de Navarra. In my opinion, he is simply the best in Spain (and we've visited quite a lot) and probably one of the best in the world, not only from the technical point of view, but also for his humanity (Diego calls him "my friend the surgeon"). My (small) doubts about BB results come from the simple fact that medicine is not an exact science, but I trust 100% Doctor Manrique recomendations. Yes, he has extensive experience in SoundBridge, bonebridge, inner ear prothesis and implants as he pioneered all this treatments here in Spain several decades ago. Unfortunately, I'm not a pro so I can't further detail you about Diego findings. I need to say that he has accurately predicted the evolution of Diego since the very beginning where others have failed both with diagnosis and the recommended treatment. Oh yes! we are inconditional fans of him! A funny detail about Diego:He had to receive several sessions of a specially painful treatement, and after the first one, this is the conversation we held:Me: Are you fine?Diego: Oh yes, it's just the moment... by the way dad... you are going to buy me something to compensate me, right?...Me: Oh yes Diego, you deserve something for your brave behaviour...Diego: Great! Then, I would like to have another session tomorrow. Can we? Pleeeeeeease. This guy is really tough...and a great negociator :lol: Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted December 9, 2015 HearPeers Heroes Report Share Posted December 9, 2015 That is so great! Get ready to compensate him for this surgery too. Smile. He sounds like a great kid with a wonderful spirit. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted December 9, 2015 HearPeers Heroes Report Share Posted December 9, 2015 Hi. Thanks to all for your support, I really apreciate it! Don't worry: Diego is doing really good and he holds a perfectly normal life at 99%. Yes, we are planning wainting to see how Diego develops without the help of fm and then we will decide if we explore the miniTek option or not. Surgeon is Doctor Manrique from Clinica Universitaria de Navarra. In my opinion, he is simply the best in Spain (and we've visited quite a lot) and probably one of the best in the world, not only from the technical point of view, but also for his humanity (Diego calls him "my friend the surgeon"). My (small) doubts about BB results come from the simple fact that medicine is not an exact science, but I trust 100% Doctor Manrique recomendations. Yes, he has extensive experience in SoundBridge, bonebridge, inner ear prothesis and implants as he pioneered all this treatments here in Spain several decades ago. Unfortunately, I'm not a pro so I can't further detail you about Diego findings. I need to say that he has accurately predicted the evolution of Diego since the very beginning where others have failed both with diagnosis and the recommended treatment. Oh yes! we are inconditional fans of him! A funny detail about Diego: He had to receive several sessions of a specially painful treatement, and after the first one, this is the conversation we held: Me: Are you fine? Diego: Oh yes, it's just the moment... by the way dad... you are going to buy me something to compensate me, right?... Me: Oh yes Diego, you deserve something for your brave behaviour... Diego: Great! Then, I would like to have another session tomorrow. Can we? Pleeeeeeease. This guy is really tough...and a great negociator :lol: Excellent! Also - you (and Diego) have extraordinary relationship with your surgeon: cherish that. I was simply curious with whom you're dealing with - spanish medicine and otorhinolaryngology is simply excellent! Pardon me, sometimes I forget myself and get into too much details I've quoted you dr. Coletti so if you wish you can gind his results so get some picture how much he got with his implantations. My prediction is that FM system Diego won't need because BB is so much clearer than a bone conduction hearing aid on the geadband which I have used for 30 years. FM system I've never used so I can't say anything about it but I will soon write you few words about the miniTek. I've read different reviews - it seems that when it was launched it had some difficulties but I haven't seen recently bad reviews. At the end, soon I'll have some experience. Until then, don't worry about the FM systems. I am also not native English speaker so it's possible to learn it pretty satisfactory. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted December 9, 2015 HearPeers Heroes Report Share Posted December 9, 2015 It does sound like an extraordinary relationship with your surgeon. It is equally important to have a great relationship with your audiologist (at least it is for cochlear implants so I assume it must be for BB). Best of luck Quote Link to comment Share on other sites More sharing options...
jadepedro Posted December 11, 2015 Author Report Share Posted December 11, 2015 Hi again! We're back at home! Surgery went really fine. BB perfectly fit with no extra complication. Took around 3 hours and a quarter for both ears. Diego recovered quite fast. The few first 12 hours were slightly harder as he felt dizzy due to anaestesia and manipulation, but as he started eating normally (he initially felt some pain chewing) he fully recovered, so just one day at hospital. Now he is wearing his BTE hearing aids like if it were earings to avoid contact with scar bandage so he is able to hear. Scar is just behind ear so no future trace of it expected. After surgery a few (really few) blood drops appeared in his nose but seems to be normal. Didn't appear again after. Activation is scheduled for 8 jan 2016, a month later. We will ask Medel for the silicone cover to get extra protection and a couple of adtional covers (Diego likes the ones with the Jolly Roger - pirate theme) Confirmed that right now, no waterwear is available for samba. We will insiste with the local representatives. Thanks againt to all. Feel free to send any question Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted December 11, 2015 HearPeers Heroes Report Share Posted December 11, 2015 Excellent Javier, give Diego hug from his bionic buddies from the HP. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted December 12, 2015 HearPeers Heroes Report Share Posted December 12, 2015 That is a pretty incredible little guy. Guerrero poderoso!! Having a lot of faith and trust in your doctor means so much. You are lucky to have him. Quote Link to comment Share on other sites More sharing options...
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