Marga Posted August 10, 2015 Author Report Share Posted August 10, 2015 Ivana: are you still living in Croatia? What kind of implants do you have, is that similar to an IC? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted August 10, 2015 HearPeers Heroes Report Share Posted August 10, 2015 Yes Marga - still living here; what future brings to me: don't know... I have condutive hearing loss (not senso-neural) that's why I use the Bonebridge implant but by profession I am an ENT M.D. with special interest within the field of audiology and otology so I like to participate here as much as I can as to learn by reading other's people experiences. It helped me a lot to understand problem from that perspective as well to understand the results which can be achieved with CI. So, you mentioned that you have otosclerosis? How advance it is? What are your hearing thresholds? I bet that you have a mixed hearing loss than if you consider a CI? Quote Link to comment Share on other sites More sharing options...
Marga Posted August 11, 2015 Author Report Share Posted August 11, 2015 Thanks for the explanation Ivana Yes, I have otosclerosis in both ears, after surgery in 1998 and 1999 the lower tones came partial back.I do not hear the higher tones anymore. This is my story in short. It's much more complicated, the results of my hearing I will hear on Wednesday. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 11, 2015 HearPeers Heroes Report Share Posted August 11, 2015 Good luck at your appointment. Quote Link to comment Share on other sites More sharing options...
Marga Posted August 11, 2015 Author Report Share Posted August 11, 2015 Thanks Mary Beth.. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted August 11, 2015 HearPeers Heroes Report Share Posted August 11, 2015 Looking forward to hearing what they have to say. I'm sure it will be a bit of a relief as then you have the information to come up with an action plan with your doctor. Hoping all goes well. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted August 11, 2015 HearPeers Heroes Report Share Posted August 11, 2015 I can see that Marga - otosclerosis does not regularly conduct forward CI except advanced stages or possible complication after the surgery. Quote Link to comment Share on other sites More sharing options...
Marga Posted August 11, 2015 Author Report Share Posted August 11, 2015 Thanks for all your comments. I was never able to talk with other people about hearing problems. It is good to hear your stories. Ivana: I did not know that there are different stages of otosclerosis. When they finally found out that I had otosclerosis, I was treated with fluoride, is that still common? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 11, 2015 HearPeers Heroes Report Share Posted August 11, 2015 I did not follow a typical sequence for otosclerosis either. Other relatives followed the typical sequence and were helped with stapendectomies. Mine began early (age 13), advanced quickly, and I had failed stapendectomy results. I also developed the sensorineural component early and it advanced quickly. I have read of several people on CI boards who had otosclerosis, so there is a group of us out there who start with otosclerosis and end up with CIs. We just don't fall into the norm for otosclerosis. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted August 12, 2015 HearPeers Heroes Report Share Posted August 12, 2015 Yes - exactly: this is called advanced otosclerosis and it can move forward until deafness. Marga, I am sure that your docs have done everything what they could but within this topic sometimes it's hard to predict. This is one of many studies: http://www.ncbi.nlm.nih.gov/m/pubmed/15841994/ http://www.ncbi.nlm.nih.gov/m/pubmed/17503225/ So, basically - stapedectomy is one of the phases, flouride treatment also... Some people reacts well just with prosthesis some need CI. We know a lot today about the otosclerosis but not enough - still can't predict how far it will go Also, a good material: http://www.sbccp.org.br/arquivos/LG_09-2011_decision-making-in-advanced.pdf This topic came under my interntion during my residency so I have prepared a lecture for other colleagues. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 12, 2015 HearPeers Heroes Report Share Posted August 12, 2015 Thanks for the links Ivana. Very interesting. Quote Link to comment Share on other sites More sharing options...
Marga Posted August 12, 2015 Author Report Share Posted August 12, 2015 Ivana: thanks for the information, very helpful. I just came back from the ENT. I have a long discussion with him. Probably this week, I will have a CT scan of my ear. I also will need to get vaccinated against pneumococcal meninigitis. We spoke about the hearing lost i have. I wish i could explain it better. It's mixes hearing loss due to otosclerorisis. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted August 12, 2015 HearPeers Heroes Report Share Posted August 12, 2015 And this summarize everything, usual hearing loss at the otisclerosis is - conductive because mostly problem is with stapes so it is mechanical. But, when the process is spread or occupy cochlea than starts sensorineural hearing loss because nerve and hearing cells are intoxicated - this means, there is no chemical/ion transmission. So, summarizing - it is mixed hearing loss with both components. Quote Link to comment Share on other sites More sharing options...
Marga Posted August 13, 2015 Author Report Share Posted August 13, 2015 Thanks Irvana for your input. You are a wonderful help. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 13, 2015 HearPeers Heroes Report Share Posted August 13, 2015 Ivana, Since we are discussing otosclerosis, I've been wondering..... After we are implanted, we still have otosclerosis in those ears, so what kind of things happen with otosclerosis and CIs after implantation as the otosclerosis continues? Quote Link to comment Share on other sites More sharing options...
Marga Posted August 13, 2015 Author Report Share Posted August 13, 2015 Mary Beth: very good question. My husband asked me yesterday the same thing. I am also wondering: there is already a litttle prothese in my ear, is that not a problem? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 13, 2015 HearPeers Heroes Report Share Posted August 13, 2015 Hi Marga, I had to have the stapedectomy prosthesis removed due to fistula issues long ago so that was not still in my middle ear when I had the CI surgery so I don't know what they do if it is still there. Did you surgeon mention if they leave it in or remove it? Mary Beth Quote Link to comment Share on other sites More sharing options...
Marga Posted August 13, 2015 Author Report Share Posted August 13, 2015 Mary Beth: i dont know. This question came to my mind last night. Probably I will ask him about it. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted August 13, 2015 HearPeers Heroes Report Share Posted August 13, 2015 Tnx Marga - anything puzzled you, just ask: if I or anybody else knows we'll try to respond. Brothers in arms - Peers on the Hearpeers! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted August 14, 2015 HearPeers Heroes Report Share Posted August 14, 2015 Well Mary Beth, otosclerosis is actually metabolic disease of the temporal bone exclusively which, inspite of all thorough investigation, we still do not know most of it. For instance, we still do not know why different focuses appears, which group of people is preordered for cochlear otosclerosis and who are "luckier" to have the otosclerosis within the stapes and its plate. Reading your story, it's obvious that your right ear was the complication of the stapedectomy, mire accurately 2 perilymph fistulas; but I don't know much about your left ear - which type of hearing loss you have there and the dynamics of its loss progression. But one thing from your personal history does jump - you had your operations pretty early. These otosclerosis are highly unpredictable regarding the result. Regarding your question, your cochlea most probably calcified as the result of the operation. What is the situation on the other side, only CT can speak about it. If the process of calcifing comtinues there is possiblity that CI is not the final solution. ABI is (auditory brainstem implant). We had a peer, an engineer from Canada who got an ABI due to the fact that CI's ceased to be enough functional for him. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted August 14, 2015 HearPeers Heroes Report Share Posted August 14, 2015 That prothese will be removed because it is on the entrance to the cochlea although I can't be sure 100% because there are 2 approach. A real question - does it perform any action? If not - answer is obvious. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 14, 2015 HearPeers Heroes Report Share Posted August 14, 2015 Thanks Ivana, My left ear also has otosclerosis and it now has a mixed - but significant sensorineural loss. The high frequencies are all gone. It qualifies for a CI also. Tiny dynamic range. Poor speech discrimination. It's nice to know there will be something out there for me if the CI ceases to be effective. I am so thankful for having all of this medical technology available to me. I feel lucky indeed. Thanks again for your time, Mary Beth Quote Link to comment Share on other sites More sharing options...
Marga Posted August 14, 2015 Author Report Share Posted August 14, 2015 Ivana: thanks again:) It is so nice from you, to give answer to our questions. Same as you Mary Beth: I am so glad to have all these oppurtinities. A few years ago i was scared to be totally deaf some day. Now I know, there will be something to help me. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted August 14, 2015 HearPeers Heroes Report Share Posted August 14, 2015 Mary Beth - yes, we are lucky to gave opportunity to live in this moment and not behind. Ok, than it's clear - you would benefit from another CI definitely, because that ear was not touched at all. Quite obviously why. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted August 14, 2015 HearPeers Heroes Report Share Posted August 14, 2015 Tnx girls - Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
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