Guest guest Posted September 11, 2008 Report Share Posted September 11, 2008 Hi everyone, I took Katy into see her reg. pediatric dr for the ear drainage. He thought it could be a infection but wanted me to follow up with her specialist which i did and who will be seeing her on Wed. Her ped doc said that he was able to see deeper in her ear then any other child he has since her lack of ear drum. During her c-toma surgery the doc patched her ear drum and as of the end of july she was cleared for swimming as at the last post op it had healed. Can an ear drum just dissapear or is my ped crazy, and is this why she is all of a sudden having drainage when she has never had any before (It is very smelly drainage)? Justwondered if anyone has experienced this. Thanks Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2008 Report Share Posted September 11, 2008 My son did not experience this same situation, but I remember his surgeon saying that an infection can eat away the graft due to the enzymes from the bacteria. I would assume that she has some sort of hole for the oozing to escape thru. Good luck to you and I hope this is not the case. eardrum Hi everyone, I took Katy into see her reg. pediatric dr for the ear drainage. He thought it could be a infection but wanted me to follow up with her specialist which i did and who will be seeing her on Wed. Her ped doc said that he was able to see deeper in her ear then any other child he has since her lack of ear drum. During her c-toma surgery the doc patched her ear drum and as of the end of july she was cleared for swimming as at the last post op it had healed. Can an ear drum just dissapear or is my ped crazy, and is this why she is all of a sudden having drainage when she has never had any before (It is very smelly drainage)? Justwondered if anyone has experienced this. Thanks Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2008 Report Share Posted September 11, 2008 Hi, Smelly drainage is almost always a sign that c-toma is back (or was never removed all the way to begin with). I can honestly say that once you have c-toma water should always be avoided even when the doc tells you it is OK. I am now 32 and had my first c-toma surgery at 16. Ever since then the docs have told me I am fine to get water in my ears and everytime I ended up with problems and more c-toma. Now I have learned my lesson that my ears do not like water and I avoid it all times. Just my experience but I do know that smelly drainage is a sure sign of c-toma so make sure you get her to the otogist asap! Amber From: Inderrieden <stephnchad@...>Subject: eardrum"c-toma group" <cholesteatoma >Date: Thursday, September 11, 2008, 5:39 PM Hi everyone, I took Katy into see her reg. pediatric dr for the ear drainage. He thought it could be a infection but wanted me to follow up with her specialist which i did and who will be seeing her on Wed. Her ped doc said that he was able to see deeper in her ear then any other child he has since her lack of ear drum. During her c-toma surgery the doc patched her ear drum and as of the end of july she was cleared for swimming as at the last post op it had healed. Can an ear drum just dissapear or is my ped crazy, and is this why she is all of a sudden having drainage when she has never had any before (It is very smelly drainage)? Justwondered if anyone has experienced this. Thanks Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2008 Report Share Posted September 12, 2008 It's pretty common for an ear infection to perforate the eardrum to release the pressure from the accumulated infected fluid. We have had one infection like that--chloe's graft was already perforated (had a hole) at the time. There was no new ctoma at that time. She did have the same awful stuff this summer when she did have a recurrance of ctoma. Only your doc can really tell you what's going on. Chloe has t tubes now to help with drainage during infection and pressure equalization so her new graft will not perforate as well. It seems odd that your ped would not have seen that before, though. Is he very new or in a small practise? I pretty much go straight to the surgeon with any ear issues that are not very simple. Chloe went to the regular pediatrician this summer for an ear infection, and he told me not to bother our ENT. The next night she was hospitalized for nearly two weeks with mastoiditis that had developed into a bone infection. She's fine, and the delay did not cause her any harm, but I could have seen her ent much sooner if I had called right away (it was a holiday weekend so we had to see other docs at the hosp until he came back on Tuesday). It did not take him long to see what was wrong and develop the plan that ended up finally getting rid of the infection and recurrent ctoma. On Thu, Sep 11, 2008 at 7:50 PM, amber krasny <am81576@...> wrote: Hi, Smelly drainage is almost always a sign that c-toma is back (or was never removed all the way to begin with). I can honestly say that once you have c-toma water should always be avoided even when the doc tells you it is OK. I am now 32 and had my first c-toma surgery at 16. Ever since then the docs have told me I am fine to get water in my ears and everytime I ended up with problems and more c-toma. Now I have learned my lesson that my ears do not like water and I avoid it all times. Just my experience but I do know that smelly drainage is a sure sign of c-toma so make sure you get her to the otogist asap! Amber From: Inderrieden <stephnchad@...> Subject: eardrum " c-toma group " <cholesteatoma >Date: Thursday, September 11, 2008, 5:39 PM Hi everyone, I took Katy into see her reg. pediatric dr for the ear drainage. He thought it could be a infection but wanted me to follow up with her specialist which i did and who will be seeing her on Wed. Her ped doc said that he was able to see deeper in her ear then any other child he has since her lack of ear drum. During her c-toma surgery the doc patched her ear drum and as of the end of july she was cleared for swimming as at the last post op it had healed. Can an ear drum just dissapear or is my ped crazy, and is this why she is all of a sudden having drainage when she has never had any before (It is very smelly drainage)? Justwondered if anyone has experienced this. Thanks Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2008 Report Share Posted September 12, 2008 is absolutely right. Once you become a cholesteatoma patient, your primary care for that ear should be your specialist - kind of like a permanent referral. ANY ear problem should be dealt with by them and not by a lesser trained individual. If your specialist objects, and I seriously doubt they will, my advice would be to find another one. My neurotologist has very clearly stated that I should be contacting his office with any pain, hearing loss, unexplained seepage, etc. He also still has me return every six months for a check-up. We keep trying to stretch that to a year, but something always comes up. I thought an awful lot of my primary care physician, but when she saw my prosthesis and thought it was a tube it scared the living daylights out of me. It's no wonder so many cases of cholesteatoma go undetected for so long! Matt s wrote: > It's pretty common for an ear infection to perforate the eardrum to > release the pressure from the accumulated infected fluid. We have had > one infection like that--chloe's graft was already perforated (had a > hole) at the time. There was no new ctoma at that time. She did have > the same awful stuff this summer when she did have a recurrance of > ctoma. Only your doc can really tell you what's going on. Chloe has t > tubes now to help with drainage during infection and pressure > equalization so her new graft will not perforate as well. It seems odd > that your ped would not have seen that before, though. Is he very new > or in a small practise? > > I pretty much go straight to the surgeon with any ear issues that are > not very simple. Chloe went to the regular pediatrician this summer > for an ear infection, and he told me not to bother our ENT. The next > night she was hospitalized for nearly two weeks with mastoiditis that > had developed into a bone infection. She's fine, and the delay did not > cause her any harm, but I could have seen her ent much sooner if I had > called right away (it was a holiday weekend so we had to see other > docs at the hosp until he came back on Tuesday). It did not take him > long to see what was wrong and develop the plan that ended up finally > getting rid of the infection and recurrent ctoma. > > On Thu, Sep 11, 2008 at 7:50 PM, amber krasny <am81576@... > <mailto:am81576@...>> wrote: > > Hi, > > Smelly drainage is almost always a sign that c-toma is back (or > was never removed all the way to begin with). I can honestly say > that once you have c-toma water should always be avoided even when > the doc tells you it is OK. I am now 32 and had my first c-toma > surgery at 16. Ever since then the docs have told me I am fine to > get water in my ears and everytime I ended up with problems and > more c-toma. Now I have learned my lesson that my ears do not like > water and I avoid it all times. > > Just my experience but I do know that smelly drainage is a sure > sign of c-toma so make sure you get her to the otogist asap! > > Amber > > > > From: Inderrieden <stephnchad@... > <mailto:stephnchad@...>> > Subject: eardrum > " c-toma group " <cholesteatoma > <mailto:cholesteatoma >> > Date: Thursday, September 11, 2008, 5:39 PM > > > Hi everyone, > I took Katy into see her reg. pediatric dr for the ear > drainage. He thought it could be a infection but wanted me to > follow up with her specialist which i did and who will be > seeing her on Wed. Her ped doc said that he was able to see > deeper in her ear then any other child he has since her lack > of ear drum. During her c-toma surgery the doc patched her ear > drum and as of the end of july she was cleared for swimming as > at the last post op it had healed. Can an ear drum just > dissapear or is my ped crazy, and is this why she is all of a > sudden having drainage when she has never had any before (It > is very smelly drainage)? Justwondered if anyone has > experienced this. Thanks > Steph > > > > > -- Quote Link to comment Share on other sites More sharing options...
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