HearPeers Heroes Mary Beth Posted January 6, 2016 HearPeers Heroes Report Share Posted January 6, 2016 Sorry Juliette that you have experienced so many problems. I am glad that your hearing is better. Hoping other things improve too over time. Juliette 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted January 6, 2016 HearPeers Heroes Report Share Posted January 6, 2016 Not burning the cookies is definitely a plus Each person anatomy is different so sometimes it can be a challenge seating the implant in the bone recess. I am bilateral and the implants are not even. One is a good bit higher than the other. I also wear a flat top haircut with it cut to the skin on the sides and back. The implant is prettynoticable but I don't worry about it. It gives me the ability to hear. That is awesome that work is much better. Will be praying that the tinnitus goes away. I have never heard of that type of tinnitus Juliette 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted January 6, 2016 HearPeers Heroes Report Share Posted January 6, 2016 Greetings, the past month has been a busy one full of lots of exciting hearing experiences. I am back at work and hearing so many more sounds. My manager stood up to talk to me the other day and I had a small panic attack because I couldn't see her mouth (to read her lips) but I needn't have worried because I could actually hear her. Such a relief. I have had the magnet strength adjusted in the processor and I can now wear it for the whole day. On the negative side. I have been advised that my implant will never sit flat owing to the way it was inserted. All of it noticeably protrudes from my head and makes wearing glasses/sunglasses quite difficult. The hearing in my right ear has not returned to pre-surgery levels (yet but still hopeful for an improvement) and even the audiologist is surprised at the drop in levels. I have also been told that the throbbing I have been experiencing in my right ear since the surgery is Pulsatile Tinnitus for which there is no cure. I haven't been given any firm answers and possible causes such as obesity and high blood pressure have been ruled out because I am quite slim and have low blood pressure. I have been advised that what may have caused it was something has been done to the mastoid that wouldn't normally have been part of the implant procedure. I will finish on a positive though. Now that I can hear better, I can hear the timer on my oven and no longer burn the cakes and cookies. J. Hello Juliette, yay! - excellent to hear that you are satisfied with your present hearing status and that you don't need anymore auxiliary methods to understand others. It's awesome step forward. If this is what they propose I would ask myself why it started to present after the surgery. So, you don't hear that sound all the time than as pulse? Is it stronger when you are working or even trying to exercise? This is how pulsatile tinnitus should sound: Pulsatile tinnitus, just by definition, mean that there is blood vessel involvement somewhere. It could be an adjacent artery, or even a branch of the jugular vein (this vein has a pulsation). The vessel could be remote from the ear if there is still inflammation in this area, or fluid in the middle ear since your chronic ear inflammation will never actually go away. Do you have any symptoms of stuffy nose or stuffed Eustachian tube or possible allergy? Is the intensity of sound same since the operation? These are important questions. Possible causes and explanations: http://www.dizziness-and-balance.com/disorders/hearing/tinnitus/pulsatile.html and: http://www.dizziness-and-balance.com/disorders/hearing/tinnitus/jugular.html also: http://www.tinnitus.org.uk/pulsatiletinnitus Regarding the observation about the thickness of the implant - part of implant is buried within a temporal bone, but part is not implanted, it just lies on the surface of the skull and this part of implant can be shaped regarding needed angle according to the shape of skull. Well, now you have to buy a smoked beer - to substitute burned cookies. Juliette 1 Quote Link to comment Share on other sites More sharing options...
Juliette Posted January 7, 2016 Author Report Share Posted January 7, 2016 Hi Ivana, yes, that is close to what the pulsatile tinnitus sounds like. It started immediately after the surgery. Sometimes it is extremely loud and worst at night when I am laying down and trying to sleep. If I press on the jugular, the sound stops but obviously this is not a long term solution. Most of my ear inflammation is in my left ear and I have not had a cold for many years (pretty fit and healthy despite my obsession with chocolate). I don't get hay fever either. My right ear does feel blocked though. The audiologist said she would present my case at the next committee meeting of the Ear Science Institute and see if anyone had some answers for me but this may take 4 to 6 weeks. What I have learned is that I was a bit naïve when the surgeon (ENT) first suggested doing the implant surgery. While he gave me information on how it all works and gave me links to websites I should have asked a lot more questions especially about how much experience he has with implants which turns out to be not very much. This could explain why he over-charged me and billed for procedures he did not do. He also could not explain any of my post-surgery problems. What I will take away from this is not to be afraid to ask the surgeon lots of questions and challenge things I am not comfortable with. But, again, the big plus is being able to hear especially at work and no one even knows I have a bone conduction implant. I certainly feel more included and don't have to wander around either looking at the ground or my mobile phone because I am worried people will talk to me and I won't know what they are saying. J. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted January 7, 2016 HearPeers Heroes Report Share Posted January 7, 2016 Juliette I am sorry to hear of your struggles. You are right in this can be a valuable lesson learned. You have got to be an advocate for yourself. Do as much research as you can and don't always just take the doctors word for it. I am very happy to hear that your hearing is progressing. Once the swelling goes down, the implant won't be quite as obvious. Please keep us posted. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted January 7, 2016 HearPeers Heroes Report Share Posted January 7, 2016 Hi Ivana, yes, that is close to what the pulsatile tinnitus sounds like. It started immediately after the surgery. Sometimes it is extremely loud and worst at night when I am laying down and trying to sleep. If I press on the jugular, the sound stops but obviously this is not a long term solution. Most of my ear inflammation is in my left ear and I have not had a cold for many years (pretty fit and healthy despite my obsession with chocolate). I don't get hay fever either. My right ear does feel blocked though. The audiologist said she would present my case at the next committee meeting of the Ear Science Institute and see if anyone had some answers for me but this may take 4 to 6 weeks. What I have learned is that I was a bit naïve when the surgeon (ENT) first suggested doing the implant surgery. While he gave me information on how it all works and gave me links to websites I should have asked a lot more questions especially about how much experience he has with implants which turns out to be not very much. This could explain why he over-charged me and billed for procedures he did not do. He also could not explain any of my post-surgery problems. What I will take away from this is not to be afraid to ask the surgeon lots of questions and challenge things I am not comfortable with. But, again, the big plus is being able to hear especially at work and no one even knows I have a bone conduction implant. I certainly feel more included and don't have to wander around either looking at the ground or my mobile phone because I am worried people will talk to me and I won't know what they are saying. Ok Juliette - I have read all your datas but I am not sure if I have understood correctly - you had chronic ear infections only in your left ear or both? Most is not precise answer - now I am asking you as a doctor. Also, if you can specify to me do you hear tinnitus on your right side or both? If you hear a tinnitus at the side of your possibly blocked nose, there is potentially cure: a simple nose drops (not longer than 5 days) or little bit more complicate, nasal corticosteroid sprays for a period of at least 14 days. Well, the Bonebridge operation is actually simple mastoidectomy, so if your surgeon did chronic ear infections surgeries he should know how to implant a BB pretty easily. My surgery was complicated because I have lowered dura and raised sigmoid sinus and shallow temporal bone due to my different anatomy, the implantation lasted cca 2,5 hours; 3,5 hours due to a difficult intubation. That's a beauty of this method. Of course, I was the second patient with my condition to be implanted with BB 2 years ago, and I still wanted to know a lot, even contacted HQ of Med-EL by myself to get more information. The level of amplification is great plus - each day I was awed by different novel event or ability in my life.... Discovering new sounds... Catching myself that I can finally hear people who are talking separately... Of course, I am working at the present on my ability to understand more in loud environments like loud restaurant, or coffee shop... But something will be left for second unit - the other ear. Juliette 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Sandy Posted January 7, 2016 HearPeers Heroes Report Share Posted January 7, 2016 Hi Juliette, I too can now hear the timer on my oven! It is good to see that you have such a positive outlook. Keep us informed on your progress. Juliette 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted January 7, 2016 HearPeers Heroes Report Share Posted January 7, 2016 Juliette I also had a number of issues with both ears over the years. Chronic fluid build up in one ear, the other wasn't necessarilly an infection but the eustacion tube was not draining like it should. Keep in close contact with your ENT as well as Audi as they know your health history and hearing history the best. I'm sure they will get to the bottom of it. Keep asking questions Quote Link to comment Share on other sites More sharing options...
Juliette Posted January 8, 2016 Author Report Share Posted January 8, 2016 Hi Ivana, I suffer chronic ear infection in my left ear and only occasional ear infection in my right ear. I have the pulsatile tinnitus only on the right side. The surgery for the implant took just over four hours and there was no other surgery performed at that time. It was meant to be a simple mastoidectomy and bone conduction implant. I am finding it difficult to get a consistent response from my surgeon and when I last saw him he did not know what was causing the pulsing in my right ear and had no explanation for any of my problems. It was the aufiologist I see for regular check-ups for the audio processor who advised I have pulsatile tinnitus and she will notify the surgeon. I will try the nose drops and if they don't work, the corticosteroid spray. Thank you so much for your advice. J. Ivana Marinac 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted January 8, 2016 HearPeers Heroes Report Share Posted January 8, 2016 Hi Ivana, I suffer chronic ear infection in my left ear and only occasional ear infection in my right ear. I have the pulsatile tinnitus only on the right side. The surgery for the implant took just over four hours and there was no other surgery performed at that time. It was meant to be a simple mastoidectomy and bone conduction implant. I am finding it difficult to get a consistent response from my surgeon and when I last saw him he did not know what was causing the pulsing in my right ear and had no explanation for any of my problems. It was the aufiologist I see for regular check-ups for the audio processor who advised I have pulsatile tinnitus and she will notify the surgeon. I will try the nose drops and if they don't work, the corticosteroid spray. Thank you so much for your advice. J. No problem Juliette - this is least I can do from my point of view but I would advise you to try find some otologist who is willing to work with you. I guessed that you are bilateral chronic ear infection patient because this usually go along. Second ear is not always affected same but it can suffer to some point. Regarding your present ENT, I don't know what to tell - it is extremely important that patient feels secure with surgeon. I know that from practice - just a simple word can make total difference. Please - keep posting here what is going on. If I can, I would gladly suggest you possible options. As I said, this is least I can do. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes hadron Posted January 8, 2016 HearPeers Heroes Report Share Posted January 8, 2016 Hi Juliette, Thanks for keeping us informed with your progress. What is the name of the CI center you are currently using? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted January 8, 2016 HearPeers Heroes Report Share Posted January 8, 2016 Hadron - Juliette is recipient of the Bonebridge, not a CI. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes hadron Posted January 8, 2016 HearPeers Heroes Report Share Posted January 8, 2016 Ok. Thanks Ivana. Sorry Juliette. I noticed on the MED-EL clinic finder you can choose CI or SoundBridge. No option for Bonebridge. Are there MED-EL centers for BoneBridge? Ivana Marinac 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Sandy Posted January 8, 2016 HearPeers Heroes Report Share Posted January 8, 2016 Hadron, if you go onto the Medel site and scroll to the bottom of the page there is a link called Candidacy for a bone conduction implant. There is information there. Quote Link to comment Share on other sites More sharing options...
Juliette Posted February 24, 2016 Author Report Share Posted February 24, 2016 Hi Ivana, I tried the nose drops and no change to the pulsatile tinnitus. I have been told it is a result of the way the implant was sited and I will have to live with it. I don't give up that easily so I will go and see another ENT. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted February 24, 2016 HearPeers Heroes Report Share Posted February 24, 2016 Good luck Juliette! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted February 24, 2016 HearPeers Heroes Report Share Posted February 24, 2016 Yes definitely advisable. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Sandy Posted February 25, 2016 HearPeers Heroes Report Share Posted February 25, 2016 Good luck, Juliette. Definitely, don't give up. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted February 25, 2016 HearPeers Heroes Report Share Posted February 25, 2016 Relentless forward motion!! Just keep plugging away. Eventually it will pay off. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted February 25, 2016 HearPeers Heroes Report Share Posted February 25, 2016 Hi Ivana, I tried the nose drops and no change to the pulsatile tinnitus. I have been told it is a result of the way the implant was sited and I will have to live with it. I don't give up that easily so I will go and see another ENT. Hello Juliette, well, we tried the most simple solution to eliminate possible postoperative consequences. As I have only partial details, I would advise you to definitely talk with otosurgeon, but we can loudly think about other possibilities as the consequence of your tinnitus. There is a possibility that Bonebridge compresses too much the sigmoid sinus - that could be explored with a CT scan. Technically, there is a possibility to elevate little bit the internal unit to reduce the pressure of the sinus. Good thing with the Bonebridge - it is not expendable, so hypothetically nothing would happen with the internal unit. I would definitely also try to contact your Med-EL representative who can help you. If you do not how to reach them, contact our moderator - Erik Haugsby: he will surely help you to connect with your representative. Please, keep us posted about further development of your status. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted March 26, 2016 HearPeers Heroes Report Share Posted March 26, 2016 Juliette I hope things are going well for you as you seemed to have a bit of a rough start. Can you update is on how things are going? Hope all is well Adam Quote Link to comment Share on other sites More sharing options...
Juliette Posted May 12, 2016 Author Report Share Posted May 12, 2016 Hi Adam, I have now had my implant for six months and it is great experiencing new sounds. I am still struggling with some post implant issues though so I went and got a second opinion. Unfortunately it appears that I may be stuck with these problems. The ENT I saw advised he was not prepared to do anything and that I needed to return to the ENT who performed the procedure for an attempt at correcting the problems. An ultrasound scan shows that the right mastoid antrum is opaque (and the left one is not). The ENT also said that where the implant has been placed it is pressing on the sigmoid sinus that is causing narrowing of the artery which would explain the pulsatile tinnitus. The implant has been placed under my ear instead of behind which may account for the constant blocked feeling I have in my ear (as well as the other symptoms). The second ENT has recommended removal of the implant if the problems do not resolve by the end of the year however he has cautioned that this may not alleviate any of the problems including the pulsatile tinnitus. I could actually be worse off as I lost more hearing from my right ear when the implant was placed, I am going to see a Tinnitus Counsellor in a couple of weeks and hoping for some good advice and strategies. I would really love to have more than three hours sleep each night. Juliette Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted May 12, 2016 HearPeers Heroes Report Share Posted May 12, 2016 So sorry you are having so much difficulty Juliette. I'm not familiar with your type of implant but I would suggest reaching out to MedEl and see if they can send a rep to your next appointment. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted May 14, 2016 HearPeers Heroes Report Share Posted May 14, 2016 Hello Juliette, I was wondering for some time how are you doing... I am sorry if you feel kind of resignation - I strongly suggest you that you contact your Med-EL counselor: they could help you by directing you. So - the other ENT also suspected that surgical circumstances could be the cause of your pulsatile tinnitus. I am afraid that tinnitus therapy will not resolve your issues - it's not just the adaptation issue. I don't know whether you have or not contacted our moderator Erik (Haugsby) - he can help you if you do not know whom you can contact further. Juliette and Mary Beth 2 Quote Link to comment Share on other sites More sharing options...
Juliette Posted June 12, 2016 Author Report Share Posted June 12, 2016 Hi Ivana, Erik is no longer a moderator so I sent a message to the new one. Still waiting to hear from him. My doctor referred me for some tinnitus counselling however the focus of the counselling was on meditation and sound therapy that I did not find helpful for my pulsatile tinnitus. Still not getting much sleep but trying to focus on the hearing experience and coping as best I can with the thumping in my ear. Quote Link to comment Share on other sites More sharing options...
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