Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Ask your doctor first!My child's ear specialist has prescribed a home cleaning regiment of 1/2 alcohol and 1/2 vinegar, we fill the ear and use it as a wash/flush cleaning method. this is to help dry out the mocus/wax/debris we have been constantly fighting. A few years ago we did a very similar regiment with very good results.Note - my daughter has no ear drums and has had a CWD on both ears.Again - Ask your doctor first, every ear is different!CrystalFrom: Dye <dyel69@...>cholesteatoma Sent: Monday, March 2, 2009 5:19:52 PMSubject: Recurring Infection Hi!! I've haven't posted in a long time, but I'm looking for some info if anyone has a similar situation. I've had cholesteatoma and have had a radical mastoidectomy, several years ago (2001). I also had to have a revision (2002) of the radical because the cholesteatoma grew back in a way that couldn't be gotten to in the office. Anyway, I'm now having lots of recurring infections. My cavity is lined with mucous membrane rather than skin. The doctor I've been seeing says basically there are three options: 1) Continue drops (Ciprodex) or use Borax powder (which causes bright red blood to come out of my ear). The Ciprodex doesn't seem to be curing the infections anymore. 2) Surgery to laser away all the mucous membrane and hope that skin grows back in it's place. I'm a little concerned about this for two reasons: 1) the mucous membrane won that battle once already and 2) the facial nerve which is right there. 3) Mastoid Obliteration which I hear isn't always successful. I'm wondering if anyone has had similar problems and what they've done. Hearing is not an issue at this point as I have a BAHA. Any help or thoughts anyone can give me would be greatly appreciated! ! Thanks!! - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 Crystal, How much solution do you put into her ear ear time? (a couple tablespoons, 1/4 cup....??) Our doctor told my husband to do this with our son's ear but didn't tell him how much total solution to put in at once. And how often do you do this? Thanks. Barbara Recurring Infection Hi!! I've haven't posted in a long time, but I'm looking for someinfo if anyone has a similar situation. I've had cholesteatoma andhave had a radical mastoidectomy, several years ago (2001). I alsohad to have a revision (2002) of the radical because the cholesteatomagrew back in a way that couldn't be gotten to in the office.Anyway, I'm now having lots of recurring infections. My cavity islined with mucous membrane rather than skin. The doctor I've beenseeing says basically there are three options:1) Continue drops (Ciprodex) or use Borax powder (which causes brightred blood to come out of my ear). The Ciprodex doesn't seem to becuring the infections anymore.2) Surgery to laser away all the mucous membrane and hope that skingrows back in it's place. I'm a little concerned about this for tworeasons: 1) the mucous membrane won that battle once already and 2)the facial nerve which is right there.3) Mastoid Obliteration which I hear isn't always successful.I'm wondering if anyone has had similar problems and what they'vedone. Hearing is not an issue at this point as I have a BAHA. Anyhelp or thoughts anyone can give me would be greatly appreciated! !Thanks!!- No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1979 - Release Date: 03/01/09 17:46:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 My childs doctor has us fill the ear canal, let it sit about 2 minutes and then drain it out. I use a bulb type thingy (like they use with newborns to clear the nose and mouth). We started off doing this daily and now do it 3 times a week (per the doc's instructions). I used a plastic container and mixed 1 cup alcohol and 1 cup vinegar and labeled it so it's alrways ready to use when it's time.i can't stress enough to for everyone to check with their doctor firstCrystalFrom: bmitchell <bmitchell@...>cholesteatoma Sent: Tuesday, March 3, 2009 7:54:38 AMSubject: Re: Recurring Infection Crystal, How much solution do you put into her ear ear time? (a couple tablespoons, 1/4 cup....??) Our doctor told my husband to do this with our son's ear but didn't tell him how much total solution to put in at once. And how often do you do this? Thanks. Barbara Recurring Infection Hi!! I've haven't posted in a long time, but I'm looking for someinfo if anyone has a similar situation. I've had cholesteatoma andhave had a radical mastoidectomy, several years ago (2001). I alsohad to have a revision (2002) of the radical because the cholesteatomagrew back in a way that couldn't be gotten to in the office.Anyway, I'm now having lots of recurring infections. My cavity islined with mucous membrane rather than skin. The doctor I've beenseeing says basically there are three options:1) Continue drops (Ciprodex) or use Borax powder (which causes brightred blood to come out of my ear). The Ciprodex doesn't seem to becuring the infections anymore.2) Surgery to laser away all the mucous membrane and hope that skingrows back in it's place. I'm a little concerned about this for tworeasons: 1) the mucous membrane won that battle once already and 2)the facial nerve which is right there.3) Mastoid Obliteration which I hear isn't always successful.I'm wondering if anyone has had similar problems and what they'vedone. Hearing is not an issue at this point as I have a BAHA. Anyhelp or thoughts anyone can give me would be greatly appreciated! !Thanks!!- No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1979 - Release Date: 03/01/09 17:46:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2009 Report Share Posted April 12, 2009 Hi , Found this note on a trawl through last month's postings - as I have similar troubles thought I should respond... Sorry for the late posting. Last year I had a mastoidectomy revision and mastoid obliteration. I too have problems with recurring infections on account of mucous membrane. I was told by my ENT doctor that the mucous membrane is a result of middle ear cells forming the surface of the cavity. I use cipro too, but only when I absolutely have to. If you've been using cipro for a long time (like since 2002) it will stop being effective, just like other antibiotics if taken over a long period. Maybe its time to talk to your doctor about alternative antibacterial therapies? Another option you might have - I guess it depends on location of the mucous membrane and your doctor's opinion - at my last ENT visit the doctor applied silver nitrate to the mucous membrane to burn it away, in the hope that skin would overgrow. I don't know whether mastoid obliteration would get rid of the problem, but if the mastoid bowl is the site of the mucous membrane it may. In my case it was done because of the extent of bone erosion and much as though I have a problem with a wet ear it is more manageable with a small and accessible cavity. Best of luck with whatever you decide to do. Garry > > Hi!! I've haven't posted in a long time, but I'm looking for some > info if anyone has a similar situation. I've had cholesteatoma and > have had a radical mastoidectomy, several years ago (2001). I also > had to have a revision (2002) of the radical because the cholesteatoma > grew back in a way that couldn't be gotten to in the office. > > Anyway, I'm now having lots of recurring infections. My cavity is > lined with mucous membrane rather than skin. The doctor I've been > seeing says basically there are three options: > > 1) Continue drops (Ciprodex) or use Borax powder (which causes bright > red blood to come out of my ear). The Ciprodex doesn't seem to be > curing the infections anymore. > > 2) Surgery to laser away all the mucous membrane and hope that skin > grows back in it's place. I'm a little concerned about this for two > reasons: 1) the mucous membrane won that battle once already and 2) > the facial nerve which is right there. > > 3) Mastoid Obliteration which I hear isn't always successful. > > I'm wondering if anyone has had similar problems and what they've > done. Hearing is not an issue at this point as I have a BAHA. Any > help or thoughts anyone can give me would be greatly appreciated!! > > Thanks!! > > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2009 Report Share Posted December 8, 2009 My daughter had that problem for a while. Boy was I scared. She does not have CML. It became obvious the antibiotic series they put her on just didn't last long enough. Once she stayed on one for about 10 days, and that seemed to kill the cooties dead. On Tue, Dec 8, 2009 at 10:22 AM, <mylifemyhappiness@...> wrote: > > > hello i am getting really worried. I have been treated for a kidney > infection 3 times inthe past month and a half. It just keeps coming back. I > am concerned the my cml may be getting worse. Anyone have any input. I am > scared. Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2009 Report Share Posted December 8, 2009 The first antibiotic i was on was cipro for 10 days, then zithromax for 5 and now bactrim back it just keeps coming back and i am so scared. ________________________________ From: Rosen Lum <rrosenlum@...> Sent: Tue, December 8, 2009 1:30:32 PM Subject: Re: [ ] recurring infection My daughter had that problem for a while. Boy was I scared. She does not have CML. It became obvious the antibiotic series they put her on just didn't last long enough. Once she stayed on one for about 10 days, and that seemed to kill the cooties dead. On Tue, Dec 8, 2009 at 10:22 AM, <mylifemyhappiness@...> wrote: > > > hello i am getting really worried. I have been treated for a kidney > infection 3 times inthe past month and a half. It just keeps coming back. I > am concerned the my cml may be getting worse. Anyone have any input. I am > scared. Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2009 Report Share Posted December 8, 2009 What does the doc say? On Tue, Dec 8, 2009 at 10:34 AM, Murray <mylifemyhappiness@...>wrote: > > > The first antibiotic i was on was cipro for 10 days, then zithromax for 5 > and now bactrim back it just keeps coming back and i am so scared. > > ________________________________ > From: Rosen Lum <rrosenlum@... <rrosenlum%40gmail.com>> > <%40> > Sent: Tue, December 8, 2009 1:30:32 PM > Subject: Re: [ ] recurring infection > > > My daughter had that problem for a while. Boy was I scared. She does not > have CML. It became obvious the antibiotic series they put her on just > didn't last long enough. Once she stayed on one for about 10 days, and that > seemed to kill the cooties dead. > > > On Tue, Dec 8, 2009 at 10:22 AM, <mylifemyhappiness@...<mylifemyhappiness%40>> > wrote: > > > > > > > hello i am getting really worried. I have been treated for a kidney > > infection 3 times inthe past month and a half. It just keeps coming back. > I > > am concerned the my cml may be getting worse. Anyone have any input. I am > > scared. Thanks > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2009 Report Share Posted December 8, 2009 I go to the leu. doc the 17th. They say to take the antibiotic and come the 17th. not much of an answer. I am so scared because on top of the infections i recently found out i had the e1a2 transcript and the b2a2 transcript which can sometimes lead to disease progression from what i have read. I can't get any answer on that til i go the 17th. i am so scared because i definitely want to see my babies grow. Not getting answers bothers me alot. Thanks for letting me get it out a little. amanda ________________________________ From: Rosen Lum <rrosenlum@...> Sent: Tue, December 8, 2009 1:47:05 PM Subject: Re: [ ] recurring infection What does the doc say? On Tue, Dec 8, 2009 at 10:34 AM, Murray <mylifemyhappiness@...>wrote: > > > The first antibiotic i was on was cipro for 10 days, then zithromax for 5 > and now bactrim back it just keeps coming back and i am so scared. > > ________________________________ > From: Rosen Lum <rrosenlum@... <rrosenlum%40gmail.com>> > <%40> > Sent: Tue, December 8, 2009 1:30:32 PM > Subject: Re: [ ] recurring infection > > > My daughter had that problem for a while. Boy was I scared. She does not > have CML. It became obvious the antibiotic series they put her on just > didn't last long enough. Once she stayed on one for about 10 days, and that > seemed to kill the cooties dead. > > > On Tue, Dec 8, 2009 at 10:22 AM, <mylifemyhappiness@...<mylifemyhappiness%40>> > wrote: > > > > > > > hello i am getting really worried. I have been treated for a kidney > > infection 3 times inthe past month and a half. It just keeps coming back. > I > > am concerned the my cml may be getting worse. Anyone have any input. I am > > scared. Thanks > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2009 Report Share Posted December 8, 2009 > > > > > > > hello i am getting really worried. I have been treated for a kidney > > infection 3 times inthe past month and a half. It just keeps coming back. > I > > am concerned the my cml may be getting worse. Anyone have any input. I am > > scared. Thanks > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2009 Report Share Posted December 8, 2009 Aw. Ease your mind. I know how you feel -- the not knowing is what can really drive you bonkers! Meanwhile, smarter folks than me in this group can do a better job of addressing this particular problem with know-how and clarity. Well, you smart folks? On Tue, Dec 8, 2009 at 10:59 AM, Murray <mylifemyhappiness@...>wrote: > > > I go to the leu. doc the 17th. They say to take the antibiotic and come the > 17th. not much of an answer. I am so scared because on top of the infections > i recently found out i had the e1a2 transcript and the b2a2 transcript which > can sometimes lead to disease progression from what i have read. I can't get > any answer on that til i go the 17th. i am so scared because i definitely > want to see my babies grow. Not getting answers bothers me alot. Thanks for > letting me get it out a little. amanda > > > ________________________________ > From: Rosen Lum <rrosenlum@... <rrosenlum%40gmail.com>> > <%40> > Sent: Tue, December 8, 2009 1:47:05 PM > > Subject: Re: [ ] recurring infection > > What does the doc say? > > On Tue, Dec 8, 2009 at 10:34 AM, Murray > <mylifemyhappiness@... <mylifemyhappiness%40>>wrote: > > > > > > > The first antibiotic i was on was cipro for 10 days, then zithromax for 5 > > and now bactrim back it just keeps coming back and i am so scared. > > > > ________________________________ > > From: Rosen Lum <rrosenlum@... <rrosenlum%40gmail.com><rrosenlum% > 40gmail.com>> > > <%40> <% > 40> > > > Sent: Tue, December 8, 2009 1:30:32 PM > > Subject: Re: [ ] recurring infection > > > > > > My daughter had that problem for a while. Boy was I scared. She does not > > have CML. It became obvious the antibiotic series they put her on just > > didn't last long enough. Once she stayed on one for about 10 days, and > that > > seemed to kill the cooties dead. > > > > > > On Tue, Dec 8, 2009 at 10:22 AM, <mylifemyhappiness@...<mylifemyhappiness%40> > <mylifemyhappiness%40>> > > > wrote: > > > > > > > > > > > hello i am getting really worried. I have been treated for a kidney > > > infection 3 times inthe past month and a half. It just keeps coming > back. > > I > > > am concerned the my cml may be getting worse. Anyone have any input. I > am > > > scared. Thanks > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2009 Report Share Posted December 8, 2009 Hi , I can hear how frustrated and frightened you are. It is not common to have the e1a2 transcript with CML. Is it possible for you to see a CML expert. Anyone with an unusual situation should see a CML expert if at all possible. Where are you located? We could make recommendations and people surely will have ideas on how to accomplish getting to an expert--but it does depend on where you are. Best wishes, Dorothy On Dec 8, 2009, at 1:59 PM, Murray wrote: > I go to the leu. doc the 17th. They say to take the antibiotic and > come the 17th. not much of an answer. I am so scared because on top > of the infections i recently found out i had the e1a2 transcript and > the b2a2 transcript which can sometimes lead to disease progression > from what i have read. I can't get any answer on that til i go the > 17th. i am so scared because i definitely want to see my babies > grow. Not getting answers bothers me alot. Thanks for letting me get > it out a little. amanda > > Quote Link to comment Share on other sites More sharing options...
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