Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 I had my cholesteatoma for seven years before it was removed. I didn't really have all that many problems for the first few years. I got infections here and there growing up but they took care of it with drops and I had tubes a few times and it wasn't really that big of a deal. But, because they waited seven years to really look for the root cause of all of my problems I lost just about all of the hearing in my ear. So, dealing with it early seems to be the best move from my experience. The longer you let it go the worse the end result seems to be, you know? > > I have had a C-toma for about 4 years. I have been getting it cleaned > and using drops with fairly good success. I have minimal to no > hearing loss with no other symptoms aside from an occasional infection > that responds to Cipro. In regards to medicine- i am in the health > field and I only want surgery if a gun is put to my head. My ENT is > somewhat indifferent about it at this point and respects my > viewpoint. He believes that the question is not if but when I will > need surgery. I am struggling with this decision. Am i foolish for > waiting when I have minimal if any symptoms now? Would I be better > off being more proactive and getting the surgery now? Anyone's > feedback would be greatly appreciated. > > Thanks > > Rex Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2006 Report Share Posted December 28, 2006 I have had a C-toma for about 4 years. I have been getting it cleaned and using drops with fairly good success. I have minimal to no hearing loss with no other symptoms aside from an occasional infection that responds to Cipro. In regards to medicine- i am in the health field and I only want surgery if a gun is put to my head. My ENT is somewhat indifferent about it at this point and respects my viewpoint. He believes that the question is not if but when I will need surgery. I am struggling with this decision. Am i foolish for waiting when I have minimal if any symptoms now? Would I be better off being more proactive and getting the surgery now? Anyone's feedback would be greatly appreciated. Hi Rex I'm not entirely clear what your describing. If the ctoma is in your middle ear then drops would only be useful if applied directly to it ie. through a perforated eardrum. A perforation in itself would constitute some hearing loss and generally be a risk for further infection. At any rate the drops may help to limit an infection in the ctoma but the ctoma itself will carry on growing ( the infection makes the ctoma more effective at causing damage through erosion). The problem you face is that ctoma tends to be a slow disease. You may carry on for years without it causing any significant problems. But you never know when it might reach a critical stage and major debilitating symptoms develop - that would be things like face paralysis, balance loss and possibly worse. That can happen in a very short space of time and some of those symptoms then be irreversible. In other words you are walking around with an ear that is unsafe and I think you'll find that everyone will tell you it is not worth the risk. It's always better to get ctoma dealt with sooner rather than later. The ctoma won't go away without surgical intervention. Phil No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.409 / Virus Database: 268.15.28/606 - Release Date: 28/12/06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2006 Report Share Posted December 28, 2006 > > I have had a C-toma for about 4 years. I have been getting it cleaned > and using drops with fairly good success. I have minimal to no > hearing loss with no other symptoms aside from an occasional infection > that responds to Cipro. In regards to medicine- i am in the health > field and I only want surgery if a gun is put to my head. My ENT is > somewhat indifferent about it at this point and respects my > viewpoint. He believes that the question is not if but when I will > need surgery. I am struggling with this decision. Am i foolish for > waiting when I have minimal if any symptoms now? Would I be better > off being more proactive and getting the surgery now? Anyone's > feedback would be greatly appreciated. > > Hi Rex > > I'm not entirely clear what your describing. If the ctoma is in your middle ear then drops would only be useful if applied directly to it ie. through a perforated eardrum. A perforation in itself would constitute some hearing loss and generally be a risk for further infection. At any rate the drops may help to limit an infection in the ctoma but the ctoma itself will carry on growing ( the infection makes the ctoma more effective at causing damage through erosion). > > The problem you face is that ctoma tends to be a slow disease. You may carry on for years without it causing any significant problems. But you never know when it might reach a critical stage and major debilitating symptoms develop - that would be things like face paralysis, balance loss and possibly worse. That can happen in a very short space of time and some of those symptoms then be irreversible. In other words you are walking around with an ear that is unsafe and I think you'll find that everyone will tell you it is not worth the risk. It's always better to get ctoma dealt with sooner rather than later. The ctoma won't go away without surgical intervention. > > Phil > > Thanks for the reply Phil- The drops are used to control and prevent infection. yes i believe the C-toma is in the middle ear. My biggest hangup is that surgery doesn't always give the greatest outcomes and again my symptoms are minimal at this point. However after reading many accounts- it does look like surgery is the recommended choice sooner than later. Basically a better choice among 2 bad options. I just hate the idea of surgery but it sounds like I better get used to it. Rex > > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.1.409 / Virus Database: 268.15.28/606 - Release Date: 28/12/06 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Rex: the b-baller from KY????? Another piece of advice that most on this board will agree with is that you should visit an otologist (ENT who specializes in ears) for a second opinion and if you need the operation, let an otologist do it rather than an ENT. An ENT might do a few c-toma surgeries per year, while an otologist may do 100+ If you scroll through the last 100 messages or so on this board, there have been links posted that will help you find an otologist nearby. Consensus opinion from people here....surgery is the only cure and waiting does you no good....but clearly your treatment options needs to come from the doc. Good luck, Mark > > > > I have had a C-toma for about 4 years. I have been getting it > cleaned > > and using drops with fairly good success. I have minimal to no > > hearing loss with no other symptoms aside from an occasional > infection > > that responds to Cipro. In regards to medicine- i am in the health > > field and I only want surgery if a gun is put to my head. My ENT > is > > somewhat indifferent about it at this point and respects my > > viewpoint. He believes that the question is not if but when I will > > need surgery. I am struggling with this decision. Am i foolish for > > waiting when I have minimal if any symptoms now? Would I be better > > off being more proactive and getting the surgery now? Anyone's > > feedback would be greatly appreciated. > > > > Hi Rex > > > > I'm not entirely clear what your describing. If the ctoma is in > your middle ear then drops would only be useful if applied directly > to it ie. through a perforated eardrum. A perforation in itself > would constitute some hearing loss and generally be a risk for > further infection. At any rate the drops may help to limit an > infection in the ctoma but the ctoma itself will carry on growing ( > the infection makes the ctoma more effective at causing damage > through erosion). > > > > The problem you face is that ctoma tends to be a slow disease. You > may carry on for years without it causing any significant problems. > But you never know when it might reach a critical stage and major > debilitating symptoms develop - that would be things like face > paralysis, balance loss and possibly worse. That can happen in a > very short space of time and some of those symptoms then be > irreversible. In other words you are walking around with an ear that > is unsafe and I think you'll find that everyone will tell you it is > not worth the risk. It's always better to get ctoma dealt with > sooner rather than later. The ctoma won't go away without surgical > intervention. > > > > Phil > > > > Thanks for the reply Phil- The drops are used to control and > prevent infection. yes i believe the C-toma is in the middle ear. > My biggest hangup is that surgery doesn't always give the greatest > outcomes and again my symptoms are minimal at this point. However > after reading many accounts- it does look like surgery is the > recommended choice sooner than later. Basically a better choice > among 2 bad options. I just hate the idea of surgery but it sounds > like I better get used to it. Rex > > > > No virus found in this outgoing message. > > Checked by AVG Free Edition. > > Version: 7.1.409 / Virus Database: 268.15.28/606 - Release Date: > 28/12/06 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Hi Rex, I think that you should definitely have surgery, especially since you have no current problems right now. If you wait, the three bones in your middle ear will eventually be destroyed and you will lose most of the hearing in that ear. The best time to have the cholesteatoma removed is before anything happens. After the bones are gone, then you will have to have many surgeries to restore your hearing and you may have to wear a hearing aid. So, I would suggest that you have surgery immediately. You may want to consider a new doctor too, since this one doesn't seem too concerned. Any good doctor would want the cholesteatoma removed immediately if they cared about your hearing. Also, I would not worry about the surgery. If the cholesteatoma is small, then the surgery should go smoothly. They will probably be able to perform it through the canal and remove it without disturbing your ear that much. I think the only reason people have poor results with surgery is if they have a large cholesteatoma in their ear; one that has caused significant damage. Anyway, I hope that you do decide to have surgery. I wish I did earlier, because now I have basically no hearing left in my left ear. Good luck! Millie > > > > > > > > I have had a C-toma for about 4 years. I have been getting it > > cleaned > > > and using drops with fairly good success. I have minimal to no > > > hearing loss with no other symptoms aside from an occasional > > infection > > > that responds to Cipro. In regards to medicine- i am in the > health > > > field and I only want surgery if a gun is put to my head. My ENT > > is > > > somewhat indifferent about it at this point and respects my > > > viewpoint. He believes that the question is not if but when I > will > > > need surgery. I am struggling with this decision. Am i foolish > for > > > waiting when I have minimal if any symptoms now? Would I be > better > > > off being more proactive and getting the surgery now? Anyone's > > > feedback would be greatly appreciated. > > > > > > Hi Rex > > > > > > I'm not entirely clear what your describing. If the ctoma is in > > your middle ear then drops would only be useful if applied directly > > to it ie. through a perforated eardrum. A perforation in itself > > would constitute some hearing loss and generally be a risk for > > further infection. At any rate the drops may help to limit an > > infection in the ctoma but the ctoma itself will carry on growing ( > > the infection makes the ctoma more effective at causing damage > > through erosion). > > > > > > The problem you face is that ctoma tends to be a slow disease. > You > > may carry on for years without it causing any significant problems. > > But you never know when it might reach a critical stage and major > > debilitating symptoms develop - that would be things like face > > paralysis, balance loss and possibly worse. That can happen in a > > very short space of time and some of those symptoms then be > > irreversible. In other words you are walking around with an ear > that > > is unsafe and I think you'll find that everyone will tell you it is > > not worth the risk. It's always better to get ctoma dealt with > > sooner rather than later. The ctoma won't go away without surgical > > intervention. > > > > > > Phil > > > > > > Thanks for the reply Phil- The drops are used to control and > > prevent infection. yes i believe the C-toma is in the middle ear. > > My biggest hangup is that surgery doesn't always give the greatest > > outcomes and again my symptoms are minimal at this point. However > > after reading many accounts- it does look like surgery is the > > recommended choice sooner than later. Basically a better choice > > among 2 bad options. I just hate the idea of surgery but it sounds > > like I better get used to it. Rex > > > > > > No virus found in this outgoing message. > > > Checked by AVG Free Edition. > > > Version: 7.1.409 / Virus Database: 268.15.28/606 - Release Date: > > 28/12/06 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 > > > > > > > > I have had a C-toma for about 4 years. I have been getting it > > > cleaned > > > > and using drops with fairly good success. I have minimal to no > > > > hearing loss with no other symptoms aside from an occasional > > > infection > > > > that responds to Cipro. In regards to medicine- i am in the > > health > > > > field and I only want surgery if a gun is put to my head. My > ENT > > > is > > > > somewhat indifferent about it at this point and respects my > > > > viewpoint. He believes that the question is not if but when I > > will > > > > need surgery. I am struggling with this decision. Am i foolish > > for > > > > waiting when I have minimal if any symptoms now? Would I be > > better > > > > off being more proactive and getting the surgery now? Anyone's > > > > feedback would be greatly appreciated. > > > > > > > > Hi Rex > > > > > > > > I'm not entirely clear what your describing. If the ctoma is > in > > > your middle ear then drops would only be useful if applied > directly > > > to it ie. through a perforated eardrum. A perforation in itself > > > would constitute some hearing loss and generally be a risk for > > > further infection. At any rate the drops may help to limit an > > > infection in the ctoma but the ctoma itself will carry on > growing ( > > > the infection makes the ctoma more effective at causing damage > > > through erosion). > > > > > > > > The problem you face is that ctoma tends to be a slow disease. > > You > > > may carry on for years without it causing any significant > problems. > > > But you never know when it might reach a critical stage and > major > > > debilitating symptoms develop - that would be things like face > > > paralysis, balance loss and possibly worse. That can happen in a > > > very short space of time and some of those symptoms then be > > > irreversible. In other words you are walking around with an ear > > that > > > is unsafe and I think you'll find that everyone will tell you it > is > > > not worth the risk. It's always better to get ctoma dealt with > > > sooner rather than later. The ctoma won't go away without > surgical > > > intervention. > > > > > > > > Phil > > > > > > > > Thanks for the reply Phil- The drops are used to control and > > > prevent infection. yes i believe the C-toma is in the middle > ear. > > > My biggest hangup is that surgery doesn't always give the > greatest > > > outcomes and again my symptoms are minimal at this point. > However > > > after reading many accounts- it does look like surgery is the > > > recommended choice sooner than later. Basically a better choice > > > among 2 bad options. I just hate the idea of surgery but it > sounds > > > like I better get used to it. Rex > > > > > > > > No virus found in this outgoing message. > > > > Checked by AVG Free Edition. > > > > Version: 7.1.409 / Virus Database: 268.15.28/606 - Release > Date: > > > 28/12/06 > > > > > > > > > > Hi As a mother of a daughter recently diagnosed and who has been seeing an ENT surgeon for the last 2 years ( at a NHS Hospital). I must stress if a consultant says go for surgery it is for one reason only your benefit. (Don't forget it costs the NHS money so they don't say you an op if you don't)- well thats my view from past experiences!!! My daughter has been left for 2 years only receiving clean up operations for recurrent infections. And only for seeking a private (costly) second opinion, have we have found out that she should infact (accorinding to the new surgeon's opinion) have had surgery sometime ago, which have saved her hearing (at the current time she has lost 70%. On the camera pics the consultant took her ear inside is pure black (rotten)and the eardrum half collasped,as yet I have to find photos that match its extent and worried when the consultant asked my permission to show them to his students, as this was the worse case he had seen. Don't worry I will be seeking Legal Advice against the NHS hospital involved -but at the moment my concern is that the new consultant can save her hearing (as he hopes he can - his words) So please DO NOT IGNORE a consultants advice unless your are 100% sure and I speak as a mother here. As a mother i am going through the (I am her mother and i have failed her stage) yours Kerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2007 Report Share Posted January 7, 2007 Millie- thanks for the input. After hearing from a number of people and reading all the posts on this site- I have definetly changed my mind. I see a new ENT next week and want to move forward with the surgery. Take Care Rex > > > > Hi Rex, > > > > I think that you should definitely have surgery, especially since > > you have no current problems right now. If you wait, the three > > bones in your middle ear will eventually be destroyed and you will > > lose most of the hearing in that ear. The best time to have the > > cholesteatoma removed is before anything happens. After the bones > > are gone, then you will have to have many surgeries to restore your > > hearing and you may have to wear a hearing aid. So, I would > suggest > > that you have surgery immediately. You may want to consider a new > > doctor too, since this one doesn't seem too concerned. Any good > > doctor would want the cholesteatoma removed immediately if they > > cared about your hearing. > > > > Also, I would not worry about the surgery. If the cholesteatoma is > > small, then the surgery should go smoothly. They will probably be > > able to perform it through the canal and remove it without > > disturbing your ear that much. I think the only reason people have > > poor results with surgery is if they have a large cholesteatoma in > > their ear; one that has caused significant damage. > > > > Anyway, I hope that you do decide to have surgery. I wish I did > > earlier, because now I have basically no hearing left in my left > > ear. > > > > Good luck! > > > > Millie > > > > > > > > > > > > > > > > > > I have had a C-toma for about 4 years. I have been getting it > > > > cleaned > > > > > and using drops with fairly good success. I have minimal to > no > > > > > hearing loss with no other symptoms aside from an occasional > > > > infection > > > > > that responds to Cipro. In regards to medicine- i am in the > > > health > > > > > field and I only want surgery if a gun is put to my head. My > > ENT > > > > is > > > > > somewhat indifferent about it at this point and respects my > > > > > viewpoint. He believes that the question is not if but when I > > > will > > > > > need surgery. I am struggling with this decision. Am i > foolish > > > for > > > > > waiting when I have minimal if any symptoms now? Would I be > > > better > > > > > off being more proactive and getting the surgery now? > Anyone's > > > > > feedback would be greatly appreciated. > > > > > > > > > > Hi Rex > > > > > > > > > > I'm not entirely clear what your describing. If the ctoma is > > in > > > > your middle ear then drops would only be useful if applied > > directly > > > > to it ie. through a perforated eardrum. A perforation in itself > > > > would constitute some hearing loss and generally be a risk for > > > > further infection. At any rate the drops may help to limit an > > > > infection in the ctoma but the ctoma itself will carry on > > growing ( > > > > the infection makes the ctoma more effective at causing damage > > > > through erosion). > > > > > > > > > > The problem you face is that ctoma tends to be a slow > disease. > > > You > > > > may carry on for years without it causing any significant > > problems. > > > > But you never know when it might reach a critical stage and > > major > > > > debilitating symptoms develop - that would be things like face > > > > paralysis, balance loss and possibly worse. That can happen in > a > > > > very short space of time and some of those symptoms then be > > > > irreversible. In other words you are walking around with an ear > > > that > > > > is unsafe and I think you'll find that everyone will tell you > it > > is > > > > not worth the risk. It's always better to get ctoma dealt with > > > > sooner rather than later. The ctoma won't go away without > > surgical > > > > intervention. > > > > > > > > > > Phil > > > > > > > > > > Thanks for the reply Phil- The drops are used to control and > > > > prevent infection. yes i believe the C-toma is in the middle > > ear. > > > > My biggest hangup is that surgery doesn't always give the > > greatest > > > > outcomes and again my symptoms are minimal at this point. > > However > > > > after reading many accounts- it does look like surgery is the > > > > recommended choice sooner than later. Basically a better > choice > > > > among 2 bad options. I just hate the idea of surgery but it > > sounds > > > > like I better get used to it. Rex > > > > > > > > > > No virus found in this outgoing message. > > > > > Checked by AVG Free Edition. > > > > > Version: 7.1.409 / Virus Database: 268.15.28/606 - Release > > Date: > > > > 28/12/06 > > > > > > > > > > > > > > > > > Hi > > As a mother of a daughter recently diagnosed and who has been seeing > an ENT surgeon for the last 2 years ( at a NHS Hospital). I must > stress if a consultant says go for surgery it is for one reason only > your benefit. (Don't forget it costs the NHS money so they don't say > you an op if you don't)- well thats my view from past experiences!!! > > My daughter has been left for 2 years only receiving clean up > operations for recurrent infections. And only for seeking a private > (costly) second opinion, have we have found out that she should > infact (accorinding to the new surgeon's opinion) have had surgery > sometime ago, which have saved her hearing (at the current time she > has lost 70%. On the camera pics the consultant took her ear inside > is pure black (rotten)and the eardrum half collasped,as yet I have to > find photos that match its extent and worried when the consultant > asked my permission to show them to his students, as this was the > worse case he had seen. Don't worry I will be seeking Legal Advice > against the NHS hospital involved -but at the moment my concern is > that the new consultant can save her hearing (as he hopes he can - > his words) So please DO NOT IGNORE a consultants advice unless your > are 100% sure and I speak as a mother here. As a mother i am going > through the (I am her mother and i have failed her stage) > > yours > > Kerry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2007 Report Share Posted January 8, 2007 Get the Surgery Done......Didn't you used to play guard for the Phoenix Suns.......but seriously.......I had a cholesteatoma in my left ear for 4 years....was just like you...put it off....used drops....had drainage....constant headaches....went on a flight to Florida...got back...ended up getting transverse myelitis....couldn't even walk for about 3 months....the infection is chronic and can spread to your brain and spinal fluid........Do NOT PUT IT OFF ANY LONGER!! I had my surgery last March and things are finally getting to be half way normal again....i can't hear out of that ear....they removed the 3 bones of hearing....but they had all been eroded away anyway....there is a reconstructive surgery...ahead...but i'm putting that off....been through too much lately.rexchapman38 <rexchapman38@...> wrote: Millie-thanks for the input. After hearing from a number of people and reading all the posts on this site- I have definetly changed my mind. I see a new ENT next week and want to move forward with the surgery.Take Care Rex> >> > Hi Rex,> > > > I think that you should definitely have surgery, especially since > > you have no current problems right now. If you wait, the three > > bones in your middle ear will eventually be destroyed and you will > > lose most of the hearing in that ear. The best time to have the > > cholesteatoma removed is before anything happens. After the bones > > are gone, then you will have to have many surgeries to restore your > > hearing and you may have to wear a hearing aid. So, I would > suggest > > that you have surgery immediately. You may want to consider a new > > doctor too, since this one doesn't seem too concerned. Any good > > doctor would want the cholesteatoma removed immediately if they > > cared about your hearing. > > > > Also, I would not worry about the surgery. If the cholesteatoma is > > small, then the surgery should go smoothly. They will probably be > > able to perform it through the canal and remove it without > > disturbing your ear that much. I think the only reason people have > > poor results with surgery is if they have a large cholesteatoma in > > their ear; one that has caused significant damage.> > > > Anyway, I hope that you do decide to have surgery. I wish I did > > earlier, because now I have basically no hearing left in my left > > ear. > > > > Good luck! > > > > Millie> > > > > > > > > > > > >> > > > > I have had a C-toma for about 4 years. I have been getting it > > > > cleaned > > > > > and using drops with fairly good success. I have minimal to > no > > > > > hearing loss with no other symptoms aside from an occasional > > > > infection > > > > > that responds to Cipro. In regards to medicine- i am in the > > > health > > > > > field and I only want surgery if a gun is put to my head. My > > ENT > > > > is > > > > > somewhat indifferent about it at this point and respects my > > > > > viewpoint. He believes that the question is not if but when I > > > will > > > > > need surgery. I am struggling with this decision. Am i > foolish > > > for > > > > > waiting when I have minimal if any symptoms now? Would I be > > > better > > > > > off being more proactive and getting the surgery now? > Anyone's > > > > > feedback would be greatly appreciated.> > > > > > > > > > Hi Rex> > > > > > > > > > I'm not entirely clear what your describing. If the ctoma is > > in > > > > your middle ear then drops would only be useful if applied > > directly > > > > to it ie. through a perforated eardrum. A perforation in itself > > > > would constitute some hearing loss and generally be a risk for > > > > further infection. At any rate the drops may help to limit an > > > > infection in the ctoma but the ctoma itself will carry on > > growing ( > > > > the infection makes the ctoma more effective at causing damage > > > > through erosion).> > > > > > > > > > The problem you face is that ctoma tends to be a slow > disease. > > > You > > > > may carry on for years without it causing any significant > > problems. > > > > But you never know when it might reach a critical stage and > > major > > > > debilitating symptoms develop - that would be things like face > > > > paralysis, balance loss and possibly worse. That can happen in > a > > > > very short space of time and some of those symptoms then be > > > > irreversible. In other words you are walking around with an ear > > > that > > > > is unsafe and I think you'll find that everyone will tell you > it > > is > > > > not worth the risk. It's always better to get ctoma dealt with > > > > sooner rather than later. The ctoma won't go away without > > surgical > > > > intervention.> > > > > > > > > > Phil> > > > > > > > > > Thanks for the reply Phil- The drops are used to control and > > > > prevent infection. yes i believe the C-toma is in the middle > > ear. > > > > My biggest hangup is that surgery doesn't always give the > > greatest > > > > outcomes and again my symptoms are minimal at this point. > > However > > > > after reading many accounts- it does look like surgery is the > > > > recommended choice sooner than later. Basically a better > choice > > > > among 2 bad options. I just hate the idea of surgery but it > > sounds > > > > like I better get used to it. Rex> > > > > > > > > > No virus found in this outgoing message.> > > > > Checked by AVG Free Edition.> > > > > Version: 7.1.409 / Virus Database: 268.15.28/606 - Release > > Date: > > > > 28/12/06> > > > >> > > >> > >> >> > > Hi> > As a mother of a daughter recently diagnosed and who has been seeing > an ENT surgeon for the last 2 years ( at a NHS Hospital). I must > stress if a consultant says go for surgery it is for one reason only > your benefit. (Don't forget it costs the NHS money so they don't say > you an op if you don't)- well thats my view from past experiences!!!> > My daughter has been left for 2 years only receiving clean up > operations for recurrent infections. And only for seeking a private > (costly) second opinion, have we have found out that she should > infact (accorinding to the new surgeon's opinion) have had surgery > sometime ago, which have saved her hearing (at the current time she > has lost 70%. On the camera pics the consultant took her ear inside > is pure black (rotten)and the eardrum half collasped,as yet I have to > find photos that match its extent and worried when the consultant > asked my permission to show them to his students, as this was the > worse case he had seen. Don't worry I will be seeking Legal Advice > against the NHS hospital involved -but at the moment my concern is > that the new consultant can save her hearing (as he hopes he can - > his words) So please DO NOT IGNORE a consultants advice unless your > are 100% sure and I speak as a mother here. As a mother i am going > through the (I am her mother and i have failed her stage)> > yours> > Kerry> __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Get the surgery now. It can take a long time for the growth to get bad and may not manifest many symptoms. Once it is bad it can destroy the bones in your middle ear, cause facial paralysis and even (in rare cases) spread to the brain. I have had surgery on my left ear and am having a second surgery in a month. My doc has also found a c-toma in my right ear which will be operated on after the left. The sooner the surgery is done the better. It is easier to get all of it out when it is smaller and you stand a much better chance of limiting the amount reconstruction needed. The surgery sucks, but is worth it when you get to keep your hearing. > > I have had a C-toma for about 4 years. I have been getting it cleaned > and using drops with fairly good success. I have minimal to no > hearing loss with no other symptoms aside from an occasional infection > that responds to Cipro. In regards to medicine- i am in the health > field and I only want surgery if a gun is put to my head. My ENT is > somewhat indifferent about it at this point and respects my > viewpoint. He believes that the question is not if but when I will > need surgery. I am struggling with this decision. Am i foolish for > waiting when I have minimal if any symptoms now? Would I be better > off being more proactive and getting the surgery now? Anyone's > feedback would be greatly appreciated. > > Thanks > > Rex > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Hello Tammy, Good for you to do research and to look into all options! Those spasms really are terrible, I know. Have you allready tried any medicine? A lot of people feel better using tablets for under the tongue, you can ask your doctor. Furthermore you can find different suggestions to help against the spasms here on the board. My second (open) Heller is now 10 weeks ago, my first one 11 years (I am 33 years old). My first spasm occurred 1 year after my first Heller and now, after my second one, I still have spasms. Yet, both my Dutch and German surgeon told me that the spasms should lessen about 3 months after surgery, I can only hope they are right. Last Saturday we had an achalasian meeting in Germany. Of course we all shared our achalasia history. It struck me how many achalasians had no or much less spasms after their surgery! So surgery definitely seems to help. As for the scars I cannot speak out of experience, as I have had open surgeries. What I saw during the presentation last Saturday, was that one has about 5 incisions. For someone who has a little bit more fat the scars are about 3 cm long, a thin person can do with 1 cm long scars. Hopefully this information will be of help to you. Isabellastla_c <stla_c@...> wrote: Hi everyone -I am still researching and looking into options. I have had a Botox injection and now facing surgery. I would like to hear from any and all who have had the surgery that are around the age of 47. I would like to know symptoms prior to and following. Following the Botox I have had HORRIFIC spasms and have continued for 5 days now. I would also like to know the size of the lap incisions and how many.Thank you all for your input. It has been amazing how many symptoms are like mine. Look forward to hearing from you.Tammy Food fight? Enjoy some healthy debatein the Answers Food Drink Q&A. Quote Link to comment Share on other sites More sharing options...
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