Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Phil, In my never-ending quest for knowledge about c-toma and all of its ramifications, may I ask why you are not a candidate for a BAHA ? I, too, found wearing "regular" hearing aids nearly impossible due to constant draining. Thanks for your time and information, Ilona Phil <psmorris@...> wrote: Hi Ingrid Sorry to hear that there's no light at the end of the tunnel for you yet. Oddly, though not exactly welcome, I find the prospect of 'no cure' a bit of a relief. At least it means I know where I stand, just take each day as it comes and don't have to wait around perpetually hoping to get better. Didn't you, or weren't you supposed to have a reconstruction, at one time - the kind where they place a little piston up against the cochlea.? I did have that done - the sound has been up and down but generally pretty good, though it seems to have increased my tinnitus and makes it more of a problem for the doctor to get inside that ear for cleaning. However, it was really the best available option available for me since this disease precludes me form wearing hearing aids or being a candidate for BAHA. Possibly like you, I've had hearing aids for much of my life and rarely ever worn them. Most of the time I had permanent discharge which made them unusable. Ears eh! Theyr'e nothing but trouble! So, Ingirid, I sincerely hope you can find some resolution for your ongoing problems or at least enough to see an end to one surgery after another. Stay in touch Phil Hi Phil, I am really sorry that you are going through this again. I wish there was something I could say. Hopefully there will be something around the corner that will stop this monster from rearing its ugly head. I am not in good shape either. The hearing in my left ear is now almost nothing after 5 surgeries, 2 different surgeons. The right ear is now almost in the same shape. I am again attempting to wear the Canta 4 Hearing Aids. My last surgery was 6 weeks ago. After wearing the aids for just 3 days, I am starting to get that pounding sound in my left ear again. Same old story for me. I really hope that there is a cure soon for everyone. If I can be of any help to you, please let me know. Sincerely, Ingrid Jannetta ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.638 / Virus Database: 409 - Release Date: 21/03/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Ilona Mostly because my audiology tests showed too little differential between sensorineural and conductive deafness. I was edging towards borderline. For some reason I do seem to have poor conduction via the mastoid though I do manage to use a conduction phone reasonably well so long as I put it against my temple or cheek. The fact of having a peculiar ctoma disease resident in the ear, mastoid and canal does complicate things too. It's no longer drainage that stops me wearing hearing aids, for the first time ever I've been free of subsidary infection for the past three years. But the surgeon says no aids because of the stuff in the ear canals. Despite that I do use one very occasionally for brief periods. I trust your'e getting on well with your BAHA. People do say they are massive improvement on conventional aids. Phil Hi Phil, In my never-ending quest for knowledge about c-toma and all of its ramifications, may I ask why you are not a candidate for a BAHA ? I, too, found wearing "regular" hearing aids nearly impossible due to constant draining. Thanks for your time and information, Ilona Phil <psmorris@...> wrote: Hi Ingrid Sorry to hear that there's no light at the end of the tunnel for you yet. Oddly, though not exactly welcome, I find the prospect of 'no cure' a bit of a relief. At least it means I know where I stand, just take each day as it comes and don't have to wait around perpetually hoping to get better. Didn't you, or weren't you supposed to have a reconstruction, at one time - the kind where they place a little piston up against the cochlea.? I did have that done - the sound has been up and down but generally pretty good, though it seems to have increased my tinnitus and makes it more of a problem for the doctor to get inside that ear for cleaning. However, it was really the best available option available for me since this disease precludes me form wearing hearing aids or being a candidate for BAHA. Possibly like you, I've had hearing aids for much of my life and rarely ever worn them. Most of the time I had permanent discharge which made them unusable. Ears eh! Theyr'e nothing but trouble! So, Ingirid, I sincerely hope you can find some resolution for your ongoing problems or at least enough to see an end to one surgery after another. Stay in touch Phil Hi Phil, I am really sorry that you are going through this again. I wish there was something I could say. Hopefully there will be something around the corner that will stop this monster from rearing its ugly head. I am not in good shape either. The hearing in my left ear is now almost nothing after 5 surgeries, 2 different surgeons. The right ear is now almost in the same shape. I am again attempting to wear the Canta 4 Hearing Aids. My last surgery was 6 weeks ago. After wearing the aids for just 3 days, I am starting to get that pounding sound in my left ear again. Same old story for me. I really hope that there is a cure soon for everyone. If I can be of any help to you, please let me know. Sincerely, Ingrid Jannetta ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.638 / Virus Database: 409 - Release Date: 21/03/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Phil, Thanks for the information. I am getting on very well with the BAHA. I have been very pleased with the clarity of sound. Take care of yourself, IlonaPhil <psmorris@...> wrote: Hi Ilona Mostly because my audiology tests showed too little differential between sensorineural and conductive deafness. I was edging towards borderline. For some reason I do seem to have poor conduction via the mastoid though I do manage to use a conduction phone reasonably well so long as I put it against my temple or cheek. The fact of having a peculiar ctoma disease resident in the ear, mastoid and canal does complicate things too. It's no longer drainage that stops me wearing hearing aids, for the first time ever I've been free of subsidary infection for the past three years. But the surgeon says no aids because of the stuff in the ear canals. Despite that I do use one very occasionally for brief periods. I trust your'e getting on well with your BAHA. People do say they are massive improvement on conventional aids. Phil Hi Phil, In my never-ending quest for knowledge about c-toma and all of its ramifications, may I ask why you are not a candidate for a BAHA ? I, too, found wearing "regular" hearing aids nearly impossible due to constant draining. Thanks for your time and information, Ilona Phil <psmorris@...> wrote: Hi Ingrid Sorry to hear that there's no light at the end of the tunnel for you yet. Oddly, though not exactly welcome, I find the prospect of 'no cure' a bit of a relief. At least it means I know where I stand, just take each day as it comes and don't have to wait around perpetually hoping to get better. Didn't you, or weren't you supposed to have a reconstruction, at one time - the kind where they place a little piston up against the cochlea.? I did have that done - the sound has been up and down but generally pretty good, though it seems to have increased my tinnitus and makes it more of a problem for the doctor to get inside that ear for cleaning. However, it was really the best available option available for me since this disease precludes me form wearing hearing aids or being a candidate for BAHA. Possibly like you, I've had hearing aids for much of my life and rarely ever worn them. Most of the time I had permanent discharge which made them unusable. Ears eh! Theyr'e nothing but trouble! So, Ingirid, I sincerely hope you can find some resolution for your ongoing problems or at least enough to see an end to one surgery after another. Stay in touch Phil Hi Phil, I am really sorry that you are going through this again. I wish there was something I could say. Hopefully there will be something around the corner that will stop this monster from rearing its ugly head. I am not in good shape either. The hearing in my left ear is now almost nothing after 5 surgeries, 2 different surgeons. The right ear is now almost in the same shape. I am again attempting to wear the Canta 4 Hearing Aids. My last surgery was 6 weeks ago. After wearing the aids for just 3 days, I am starting to get that pounding sound in my left ear again. Same old story for me. I really hope that there is a cure soon for everyone. If I can be of any help to you, please let me know. Sincerely, Ingrid Jannetta ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.638 / Virus Database: 409 - Release Date: 21/03/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Phil, Thanks for the information. I am getting on very well with the BAHA. I have been very pleased with the clarity of sound. Take care of yourself, IlonaPhil <psmorris@...> wrote: Hi Ilona Mostly because my audiology tests showed too little differential between sensorineural and conductive deafness. I was edging towards borderline. For some reason I do seem to have poor conduction via the mastoid though I do manage to use a conduction phone reasonably well so long as I put it against my temple or cheek. The fact of having a peculiar ctoma disease resident in the ear, mastoid and canal does complicate things too. It's no longer drainage that stops me wearing hearing aids, for the first time ever I've been free of subsidary infection for the past three years. But the surgeon says no aids because of the stuff in the ear canals. Despite that I do use one very occasionally for brief periods. I trust your'e getting on well with your BAHA. People do say they are massive improvement on conventional aids. Phil Hi Phil, In my never-ending quest for knowledge about c-toma and all of its ramifications, may I ask why you are not a candidate for a BAHA ? I, too, found wearing "regular" hearing aids nearly impossible due to constant draining. Thanks for your time and information, Ilona Phil <psmorris@...> wrote: Hi Ingrid Sorry to hear that there's no light at the end of the tunnel for you yet. Oddly, though not exactly welcome, I find the prospect of 'no cure' a bit of a relief. At least it means I know where I stand, just take each day as it comes and don't have to wait around perpetually hoping to get better. Didn't you, or weren't you supposed to have a reconstruction, at one time - the kind where they place a little piston up against the cochlea.? I did have that done - the sound has been up and down but generally pretty good, though it seems to have increased my tinnitus and makes it more of a problem for the doctor to get inside that ear for cleaning. However, it was really the best available option available for me since this disease precludes me form wearing hearing aids or being a candidate for BAHA. Possibly like you, I've had hearing aids for much of my life and rarely ever worn them. Most of the time I had permanent discharge which made them unusable. Ears eh! Theyr'e nothing but trouble! So, Ingirid, I sincerely hope you can find some resolution for your ongoing problems or at least enough to see an end to one surgery after another. Stay in touch Phil Hi Phil, I am really sorry that you are going through this again. I wish there was something I could say. Hopefully there will be something around the corner that will stop this monster from rearing its ugly head. I am not in good shape either. The hearing in my left ear is now almost nothing after 5 surgeries, 2 different surgeons. The right ear is now almost in the same shape. I am again attempting to wear the Canta 4 Hearing Aids. My last surgery was 6 weeks ago. After wearing the aids for just 3 days, I am starting to get that pounding sound in my left ear again. Same old story for me. I really hope that there is a cure soon for everyone. If I can be of any help to you, please let me know. Sincerely, Ingrid Jannetta ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.638 / Virus Database: 409 - Release Date: 21/03/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Hi Phil, I pretty much feel that this is the end of the road for me except for cleanings. I have had 2 reconstructions and the piston (Torp) has slipped or been engulfed with infection. It seems to work when it feels like it. My Hearing test last week showed me almost deaf in the left ear, that is with the reconstruction. Tinnitus for me has also increased. I am at the point that one more serious infection and I am going to have them remove the Torp and shut down the ear, until something new becomes available. I also feel slightly relieved that I have made the decision for no more repair work, just cleanings. I have had hearing problems all of my life and it is not like this is something new for me. I am not a candidate for the BAHA as I also have some nerve damage. I have spent over a year of my life trying to make things better and that just has not been the case. As you, I am going to get on with my life and take it as it comes. I have been too excited thinking that each surgery was going to be the one and then I am left down in the depression pits again. The Otologist I have is very good and he is about to pull his own hair out. The C-Toma does not want to leave and there seems to be nothing at this time that anyone can do about it. Cleaning is the only way for now. I have resigned myself to this and my hopes are to enjoy this summer and hopefully not have to think about this ear, except for my normal things. Another chapter to the book, yours too. Write whenever you would like. Sincerely, Ingrid -----Original Message----- From: Phil [mailto:psmorris@...] Sent: Wednesday, April 28, 2004 3:28 PM cholesteatoma Subject: Re: Managing ctoma - Ingrid Hi Ingrid Sorry to hear that there's no light at the end of the tunnel for you yet. Oddly, though not exactly welcome, I find the prospect of 'no cure' a bit of a relief. At least it means I know where I stand, just take each day as it comes and don't have to wait around perpetually hoping to get better. Didn't you, or weren't you supposed to have a reconstruction, at one time - the kind where they place a little piston up against the cochlea.? I did have that done - the sound has been up and down but generally pretty good, though it seems to have increased my tinnitus and makes it more of a problem for the doctor to get inside that ear for cleaning. However, it was really the best available option available for me since this disease precludes me form wearing hearing aids or being a candidate for BAHA. Possibly like you, I've had hearing aids for much of my life and rarely ever worn them. Most of the time I had permanent discharge which made them unusable. Ears eh! Theyr'e nothing but trouble! So, Ingirid, I sincerely hope you can find some resolution for your ongoing problems or at least enough to see an end to one surgery after another. Stay in touch Phil Hi Phil, I am really sorry that you are going through this again. I wish there was something I could say. Hopefully there will be something around the corner that will stop this monster from rearing its ugly head. I am not in good shape either. The hearing in my left ear is now almost nothing after 5 surgeries, 2 different surgeons. The right ear is now almost in the same shape. I am again attempting to wear the Canta 4 Hearing Aids. My last surgery was 6 weeks ago. After wearing the aids for just 3 days, I am starting to get that pounding sound in my left ear again. Same old story for me. I really hope that there is a cure soon for everyone. If I can be of any help to you, please let me know. Sincerely, Ingrid Jannetta --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.638 / Virus Database: 409 - Release Date: 21/03/04 This Cholesteatoma support group offers and provides information of a general nature about cholesteatoma as well as members personal experiences with this disease. The information provided is not intended to replace surgical or medical advice or recommendations. Any information in the messages, postings or articles on the web site should not be considered a substitute for consultation with a medical professional to address individual medical needs. Individuals' particular facts and circumstances will determine the treatment which is most appropriate. Quote Link to comment Share on other sites More sharing options...
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