Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 my daughter had canal wall down surgery in one of her ears on the first surgery, a modified radical mastoidectomy, which as far as i'm aware is where they take the canal wall down, but leave any remaining ossicles in place (please correct if this is wrong). knowing what i know now of c-toma, i would have asked for at least an attempt at canal wall up. having said that, her ENT said it was particularly agressive, completely filled the mastoid and attic. some ossicular damage. the " mastoid bowl " as they call it is not too bad in her case, nor in that of my brother who had had a radical mastoidectomy, all his ossicles were eroded and he was treated for a potential brain abscess. it is an enlargement of the opening to the ear canal. you wouldnt spot it in either of them unless you were looking for it and comparing it with the ear on the other side! neither of them have had a reconstruction. my brother never will, and has no hearing at all in that ear. francesca has some hearing in that ear bordering between moderate and severe hearing loss. it has been mentioned that when she is older she may have a reconstruction, but for some unknown reason her docs think this will be an unlikely choice....we'll wait and see. Because of the aggressive nature of francesca's c-toma, in retrospect an open cavity approach was probably best. she has had a further massive recurrence and has regular cleaning. this varies between weekly visits if things arent going too good and 12 week intervals. this means that her doc can use forceps and suction to remove any moisture/debris as an outpatient procedure. it's not always comfortable for her, but she's been going through " cleaning " since she was four years old, at one point on a daily basis. we have practised " nice thoughts and deep breathing " techniques, that work really well whilst she is having the " cleaning " and she copes well. the biggest problem with canal wall down is the water percautions bit. it really is in our case an absolutely no go area. this means showering, hairwashing are much more difficult. swimming is a No No. but you work around things and life goes on. hope this opinion helps... best of luck julie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Hi, I had the surgery about 15 years ago. As far as the opening goes, unless someone is looking into your ear, it is not noticeable. It is also an individual thing--what I may find gross others may not. The purpose of the enlargement is so that the ENT can ensure that the area remains dry and clear of " debris " . I am lucky because I only recently started having almost constant drainage. Until then I went to the ENT for regular cleaning/vacumming of the affected ear (every 6 months). I have a bit of c-toma on the stapes that must be extracted yearly. My ENT stated before my surgery that as long as the nerve is intact and unaffected, I would be able to hear with the help of a hearing aid. I waited a couple of years before getting a hearing aid--couldn't hear very well but I coped--and it has helped tremendously. I will never have perfect hearing but I can hear the birds, waterfalls, and things that most people take for granted. I missed all of this during the years immediately after the surgery. Each of us have different but related problems. I believe that the final emotional outcome is directly related to how much information we have concerning the disease and how it will affect our lives. My ENT was kind enough to cover the " after you have surgery " pros and cons (including emotional) which helped me cope after the surgery was completed. Connie ----Original Message Follows---- From: rlockw1092@... Reply-cholesteatoma cholesteatoma Subject: Chiming In Date: Thu, 4 Apr 2002 21:47:25 EST MIME-Version: 1.0 Received: from [66.218.66.74] by hotmail.com (3.2) with ESMTP id MHotMailBE765B59006C4004320B42DA424A0DDB37; Thu, 04 Apr 2002 18:48:35 -0800 Received: from [66.218.67.192] by n19.grp.scd. with NNFMP; 05 Apr 2002 02:47:30 -0000 Received: (EGP: mail-8_0_3_1); 5 Apr 2002 02:47:30 -0000 Received: (qmail 89517 invoked from network); 5 Apr 2002 02:47:29 -0000 Received: from unknown (66.218.66.217) by m10.grp.scd. with QMQP; 5 Apr 2002 02:47:29 -0000 Received: from unknown (HELO imo-d04.mx.aol.com) (205.188.157.36) by mta2.grp.scd. with SMTP; 5 Apr 2002 02:47:28 -0000 Received: from RLockw1092@... imo-d04.mx.aol.com (mail_out_v32.5.) id r.107.fa1cc2c (4414) for <cholesteatoma >; Thu, 4 Apr 2002 21:47:25 -0500 (EST) From sentto-3569392-1271-1017974850-cefgibb Thu, 04 Apr 2002 18:49:51 -0800 X-eGroups-Return: sentto-3569392-1271-1017974850-cefgibb=hotmail.com@... X-Sender: RLockw1092@... X-Apparently-cholesteatoma Message-ID: <107.fa1cc2c.29de6a3d@...> X-Mailer: AOL 6.0 for Windows US sub 10564 X--Profile: rlialw Mailing-List: list cholesteatoma ; contact cholesteatoma-owner Delivered-mailing list cholesteatoma Precedence: bulk List-Unsubscribe: <mailto:cholesteatoma-unsubscribe > Hello all, Just chiming in with a big " Me too! " . Yes, doctors, even ENTs, need to be way more aware of when conditions are ripe for cholesteatoma. I went to a few " top-notch " ENTs over my years of chronic otitis media. I finally got tired of the co-pays when it was always the same old thing: vacuum it out, an antihistamine & cortisporin otic, antibiotics if it was real bad, and the advice to keep it dry. So I just self-treated and went to my regular doctor for antibiotics when it got real bad. All those doctors, all those years, no one ever warned me about the risk of developing cholesteatoma. Me, too, also on caring for little ones after surgery. My boys were 1 & 9 for my 1st surgery, 2 & 10 for the second. I didn't have a lot of pain with either op (tympanomastoidectomy he called it), didn't need the prescription strength stuff, just a lot of discomfort. You know, the surprise taste nerve thing, the packed ear, the numb face, the stitches. And, finally, me too on the " Oh, no, not again " post. I go back to my ENT on Monday so he can check out my CT scan and start getting ready for another surgery. I had a really hard time accepting it. I'm tired of this mess! But I'm glad I found this list. Any canal wall downers out there, I'm very interested in the aftermath of this. My ENT mentioned it as a possibility due to what he calls the aggressive nature of my c-toma. I'm leaning towards pushing for my regular c-toma removal, even if it means more surgery, but would like to hear how you find living with it. Mancie called the widened opening " gross " ...how big are we talking here? How many of you who've had it can still hear? Thanks! _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 , it is not that big a deal with the wider ear canal, no one can see it but you. And after the swelling is down, it is fine. It is all the other after effects that I am having that drive me nuts. Chiming In Hello all, Just chiming in with a big "Me too!". Yes, doctors, even ENTs, need to be way more aware of when conditions are ripe for cholesteatoma. I went to a few "top-notch" ENTs over my years of chronic otitis media. I finally got tired of the co-pays when it was always the same old thing: vacuum it out, an antihistamine & cortisporin otic, antibiotics if it was real bad, and the advice to keep it dry. So I just self-treated and went to my regular doctor for antibiotics when it got real bad. All those doctors, all those years, no one ever warned me about the risk of developing cholesteatoma. Me, too, also on caring for little ones after surgery. My boys were 1 & 9 for my 1st surgery, 2 & 10 for the second. I didn't have a lot of pain with either op (tympanomastoidectomy he called it), didn't need the prescription strength stuff, just a lot of discomfort. You know, the surprise taste nerve thing, the packed ear, the numb face, the stitches. And, finally, me too on the "Oh, no, not again" post. I go back to my ENT on Monday so he can check out my CT scan and start getting ready for another surgery. I had a really hard time accepting it. I'm tired of this mess! But I'm glad I found this list. Any canal wall downers out there, I'm very interested in the aftermath of this. My ENT mentioned it as a possibility due to what he calls the aggressive nature of my c-toma. I'm leaning towards pushing for my regular c-toma removal, even if it means more surgery, but would like to hear how you find living with it. Mancie called the widened opening "gross"...how big are we talking here? How many of you who've had it can still hear? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2002 Report Share Posted April 7, 2002 In a message dated 04/04/2002 7:50:26 PM Pacific Daylight Time, rlockw1092@... writes: Any canal wall downers out there, I'm very interested in the aftermath of this. My ENT mentioned it as a possibility due to what he calls the aggressive nature of my c-toma. I'm leaning towards pushing for my regular c-toma removal, even if it means more surgery, but would like to hear how you find living with it. Mancie called the widened opening "gross"...how big are we talking here? How many of you who've had it can still hear? Thanks! Hi My daughter Alyssa (9) had CWD in August, and is doing fine. Just after surgery and for a month or so, the opening to the ear canal looks quite a bit larger but with time has gotten smaller. It looks just a little but different than the other side, but you really have to look at it to notice. As far as hearing goes, we're not sure exactly when it happened, but she now has total hearing loss in that ear. The doctor seems bewildered about this and can't explain why or when it happened. It was definitely between her last two surgeries, according to the hearing tests. She now goes in every 3 mos to have it checked/cleaned. Herr next appt is the beginning of May, and we'll let you know how it goes. Good luck to you Quote Link to comment Share on other sites More sharing options...
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