Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 There are 2 bversions of the CWD, the normal one and the Modified Radical. Which one did he have? The Modified Radical has a very high rate of sucess. I'm coming up on 27 years on mine with on return. The sucess rate of the the Modified radical is about 85% to 90%..... tom hansen --- i444234 <i444234@...> wrote: > My son had a congenital cholesteoma removed in > September 2004.About 2 > months ago he had discharge from his ear and the > specialist found > that > the c-thoma had returned. Since my son had had a > wall down surgery, > the doctor did extensive cleaning at his office, and > removed a lot of > tissue from the ear.A week later it was all nice and > clean on our > second visit.We have an appoitment for September. > But I just notice > that awfull smell, and I KNOW the darm thing is > back. I guess my true > dissapoitment comes from the fact that my son is a > wrestler at > school, entering his Senior Year, and hoping to go > to college on a > sport scholarship...this is his last opportunity to > do his wrestling > before graduation. Last surgery he was away from > contact sport for > almost 4 months and missed his season. > Do you guys think it will be ok if we posptpone the > inevitable next > surgery until his season his over.? That will not be > until march of > next year so it is like 9 months...Do you guys think > that maybe we > can get by with office procedures until them? > We are going to the doctor tomorrow...I wonder If i > should ask the > doctor to do a scan to see how big this thing is > this time. > His earing in that ear is pretty bad,like 30-40% > only. The other ear > is very good and has no problems. > Please share some thoughts > , mom to > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Hi Tom You have been my main point of reference, as you seem to have been luck and had few if any ear problems since your mastoidectomy 27 years ago. Following you, I would think there's hope for me yet. I had my cholesteatoma removed via modified radical mastoidectomy CWD in November 1999 and since then have been cholesteatoma-free, though I have had almost constant ear infections and perforations. I have a BAHA because of associated hearing loss and can't use 'regular' air conducting hearing aids because of constant discharge. In late April to early May, I had an ear infection leading to bilateral perforation of the eardrums. The prescribed antibiotics didn't clear the infection as they usually would, and around 3 weeks later I had another painful bout of otitis media, which lead to another course of antibiotics which again seemed not to work as well as usual. Early this month I was back at the doctors feeling dizzy and in severe pain with discharge from the ears. I was diagnosed with a viral infection *and* a bacterial infection and got meds to stop me feeling dizzy and more antibiotics. Again, the antibiotics failed to clear up the infection as they would previously. The infection persevered and last week both eardrums perforated again. My GP refused to give me antibiotics this time as they have so far "failed to work" three times (I'm allergic to most of the other types which can be taken orally, and have adverse reactions (headaches, sickness and diarrhoea, etc.) or am already immune to the remaining types, so am now waiting to see what happens next). Instead, he recommended I go up to the hospital and see the ENT guys up there, the clinic for which was 2 days later, luckily. Up at the clinic last Thursday, I saw the ENT Registrar - not my normal otolaryngologist - and after hoovering my ears out (which he said were a real mess) he gave me antibiotic drops (Sofradex) for each ear, recommended I take the meds previously prescribed to counteract the dizziness only when I feel sick as well as dizzy, and try to tolerate the dizziness as much as possible without meds. I've had this dizziness now for just over the month. It's more obvious if I move suddenly, or if I change position, say, from lying down to sitting up or vice versa, but it's definitely there, not just 'in my head'. The ENT Registrar said to me - three times, not just the once - that it's "absolutely vital" I keep my August appointment with the Otolaryngologist, but despite my asking, he wouldn't say more than he felt Mr F (the otolaryngologist) would like to see how my ears currently are. Hmmmmmmmmm. My concern now is that perhaps the cholesteatoma is back. It's only a concern and not a worry or fear, as there's no point in worrying about something I can't change. I have the appointment in August which I shall keep without fail, and we shall see what Mr F says then. Until then... it's just a matter of waiting, eh? Fingers crossed that it's just a case of severe and persistent infection, and not a monster in my ear. Kazzy xx Re: Sad and dissapointed There are 2 bversions of the CWD, the normal one andthe Modified Radical. Which one did he have? TheModified Radical has a very high rate of sucess. I'mcoming up on 27 years on mine with on return. Thesucess rate of the the Modified radical is about 85%to 90%.....tom hansen--- i444234 <i444234aol> wrote:> My son had a congenital cholesteoma removed in> September 2004.About 2 > months ago he had discharge from his ear and the> specialist found > that > the c-thoma had returned. Since my son had had a> wall down surgery, > the doctor did extensive cleaning at his office, and> removed a lot of > tissue from the ear.A week later it was all nice and> clean on our > second visit.We have an appoitment for September.> But I just notice > that awfull smell, and I KNOW the darm thing is> back. I guess my true > dissapoitment comes from the fact that my son is a> wrestler at > school, entering his Senior Year, and hoping to go> to college on a > sport scholarship...this is his last opportunity to> do his wrestling > before graduation. Last surgery he was away from> contact sport for > almost 4 months and missed his season.> Do you guys think it will be ok if we posptpone the> inevitable next > surgery until his season his over.? That will not be> until march of > next year so it is like 9 months...Do you guys think> that maybe we > can get by with office procedures until them?> We are going to the doctor tomorrow...I wonder If i> should ask the > doctor to do a scan to see how big this thing is> this time. > His earing in that ear is pretty bad,like 30-40%> only. The other ear > is very good and has no problems.> Please share some thoughts> , mom to > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Kazzy Thanks, I do feel lucky on my outcome with C-toma. for those who did not know I had 2 removal attempts prior to my Modified Radical which was followed by bone reconstruction 4 years later. Also been very lucky on the Docs I have had. The 2 removal attempts where done by my ENT in the mid 70's, I was 15 and 16 at the time. They where about 7 months apart, however this ENT was known in the Omaha Metro as the Doc to see for inner ear issues. Did not have a relapse until July of 79 after my 2nd removal attemp, this was in my first year in the Marine Corps. For some strange reason the Marine Corps took me, thinking back that was lucky as they would not in todays world. When I was going to Aviation School during the summer started swimming a lot at the base pool, it was the cool thing to do in more ways than one. Finished School and headed for Cherry Point in September. It was about that time the draining was getting out of control so I ended up at the Hospital at Camp LeJune seeing a Navy Doc. It took him all about 3 seconds to know what I had when he looked in my ear for the 1st time. The next thing I know he was setting up a date for Surgery, back then the Modified Radical was not widely heard of. He discussed with me his plan of attack for the c-toma, being 19 and out on my own for the 1st time I was a bit overwhelmed. Was in the Hospital for about a week then was given 30 days convalescent leave. When the Doc released me from his care he just said don't be stupid and do dumb things this would heal up just fine. He was not concerned about water getting in there, said that I could swim all I wanted to. Actually his words where as long as it was not skin diving or sky diving he did not care what I did. The good thing about the CWD is that is has such a high success rate due to the fact that there is very little in the inner ear for c-toma can develop from. Unfortunately there will be some that will keep getting c-toma with after a CWD, but for most it ends it. There also is a misnomer that with a CWD and or Modified Radical that Reconstruction is impossible. From what I've been told it actually makes the reconstruction in most case's easier to happen. The thing I see is that many Docs are not giving healing a chance prior to reconstruction as to seeing if the c-toma comes back or not. Trust me, I know how painful the aftermath of all this can be. However if you don't get ride of the c-toma for good what good is the reconstruction going to be? Going back to the Navy Doc, he would not think of doing the reconstruction until 3 or 4 years after my CWD. Once again he wanted to see if it came back or not and to give a good length of time for things to heal. My Reconstruction was in 1983, they used the cartilage from the tip of my ear to recreate the hearing bones. I got back up to 82% on the hearing so it worked out OK....What kills me is when repeat surgery's happens to kids with this stuff. Currently I live in the Kansas City Area and one of the Best Otologists in the country as my Doc, Brad Thedinger. My hearing about 4 years ago started to go down hill. The Doc said that a re-reconsturction was not a option at this point in time so it was a hearing aid which has worked very well. With the hearing aid my hearing is up to 92%, better than the reconstruction. I guess what I'm saying is that the quality of the Doc is very important. Heard of many ENT horror stories, and very few bad things about Otologists. Know that your across the Pond and may not have the option of choice in Docs, hang in there as it can only get better... tom hansen --- Kazbat <kazbat@...> wrote: > Hi Tom > > You have been my main point of reference, as you > seem to have been luck and had few if any ear > problems since your mastoidectomy 27 years ago. > Following you, I would think there's hope for me > yet. I had my cholesteatoma removed via modified > radical mastoidectomy CWD in November 1999 and since > then have been cholesteatoma-free, though I have had > almost constant ear infections and perforations. I > have a BAHA because of associated hearing loss and > can't use 'regular' air conducting hearing aids > because of constant discharge. > > In late April to early May, I had an ear infection > leading to bilateral perforation of the eardrums. > The prescribed antibiotics didn't clear the > infection as they usually would, and around 3 weeks > later I had another painful bout of otitis media, > which lead to another course of antibiotics which > again seemed not to work as well as usual. Early > this month I was back at the doctors feeling dizzy > and in severe pain with discharge from the ears. I > was diagnosed with a viral infection *and* a > bacterial infection and got meds to stop me feeling > dizzy and more antibiotics. Again, the antibiotics > failed to clear up the infection as they would > previously. The infection persevered and last week > both eardrums perforated again. My GP refused to > give me antibiotics this time as they have so far > " failed to work " three times (I'm allergic to most > of the other types which can be taken orally, and > have adverse reactions (headaches, sickness and > diarrhoea, etc.) or am already immune to the > remaining types, so am now waiting to see what > happens next). Instead, he recommended I go up to > the hospital and see the ENT guys up there, the > clinic for which was 2 days later, luckily. > > Up at the clinic last Thursday, I saw the ENT > Registrar - not my normal otolaryngologist - and > after hoovering my ears out (which he said were a > real mess) he gave me antibiotic drops (Sofradex) > for each ear, recommended I take the meds previously > prescribed to counteract the dizziness only when I > feel sick as well as dizzy, and try to tolerate the > dizziness as much as possible without meds. I've > had this dizziness now for just over the month. > It's more obvious if I move suddenly, or if I change > position, say, from lying down to sitting up or vice > versa, but it's definitely there, not just 'in my > head'. > > The ENT Registrar said to me - three times, not just > the once - that it's " absolutely vital " I keep my > August appointment with the Otolaryngologist, but > despite my asking, he wouldn't say more than he felt > Mr F (the otolaryngologist) would like to see how my > ears currently are. Hmmmmmmmmm. My concern now is > that perhaps the cholesteatoma is back. It's only a > concern and not a worry or fear, as there's no point > in worrying about something I can't change. I have > the appointment in August which I shall keep without > fail, and we shall see what Mr F says then. Until > then... it's just a matter of waiting, eh? > > Fingers crossed that it's just a case of severe and > persistent infection, and not a monster in my ear. > > Kazzy > xx > > > > > > Re: Sad and dissapointed > > > There are 2 bversions of the CWD, the normal one > and > the Modified Radical. Which one did he have? The > Modified Radical has a very high rate of sucess. > I'm > coming up on 27 years on mine with on return. The > sucess rate of the the Modified radical is about > 85% > to 90%..... > > tom hansen > > --- i444234 <i444234@...> wrote: > > > My son had a congenital cholesteoma removed in > > September 2004.About 2 > > months ago he had discharge from his ear and the > > specialist found > > that > > the c-thoma had returned. Since my son had had a > > wall down surgery, > > the doctor did extensive cleaning at his office, > and > > removed a lot of > > tissue from the ear.A week later it was all nice > and > > clean on our > > second visit.We have an appoitment for > September. > > But I just notice > > that awfull smell, and I KNOW the darm thing is > > back. I guess my true > > dissapoitment comes from the fact that my son is > a > > wrestler at > > school, entering his Senior Year, and hoping to > go > > to college on a > > sport scholarship...this is his last opportunity > to > > do his wrestling > > before graduation. Last surgery he was away from > > contact sport for > > almost 4 months and missed his season. > > Do you guys think it will be ok if we posptpone > the > > inevitable next > > surgery until his season his over.? That will > not be > > until march of > > next year so it is like 9 months...Do you guys > think > > that maybe we > > can get by with office procedures until them? > > We are going to the doctor tomorrow...I wonder > If i > > should ask the > > doctor to do a scan to see how big this thing is > > this time. > > His earing in that ear is pretty bad,like 30-40% > > only. The other ear > > is very good and has no problems. > > Please share some thoughts > > , mom to > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 I know what you are going through, we have worked surgery recovery time around football and summers with swimming. My other son is a wrestler and I know what this must mean to your son. Sometimes the foul smell is from a psuedomonous sp? type infection and the doc prescribed drops. But as a mom, you always have the feeling that it is back. Talk with your doctor, they may be able to work around wrestling. Good luck, Jen. > > My son had a congenital cholesteoma removed in September 2004.About 2 > months ago he had discharge from his ear and the specialist found > that > the c-thoma had returned. Since my son had had a wall down surgery, > the doctor did extensive cleaning at his office, and removed a lot of > tissue from the ear.A week later it was all nice and clean on our > second visit.We have an appoitment for September. But I just notice > that awfull smell, and I KNOW the darm thing is back. I guess my true > dissapoitment comes from the fact that my son is a wrestler at > school, entering his Senior Year, and hoping to go to college on a > sport scholarship...this is his last opportunity to do his wrestling > before graduation. Last surgery he was away from contact sport for > almost 4 months and missed his season. > Do you guys think it will be ok if we posptpone the inevitable next > surgery until his season his over.? That will not be until march of > next year so it is like 9 months...Do you guys think that maybe we > can get by with office procedures until them? > We are going to the doctor tomorrow...I wonder If i should ask the > doctor to do a scan to see how big this thing is this time. > His earing in that ear is pretty bad,like 30-40% only. The other ear > is very good and has no problems. > Please share some thoughts > , mom to > Quote Link to comment Share on other sites More sharing options...
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