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Cholesteatoma
seekingimprovedhearing posted:
Hi,
I just had my 4th Cholesteatoma surgery 2 weeks ago. The surgery itself was bascially painfree for me. I think I took one pain pill the first day. As long as you don't bend over for the first week or so and take it easy. It is fine. The frustrating part for me has been keeping it dry, and the loss of hearing. I normally wear hearing aids and I am not able to wear any in that ear for 4 months until it is completely healed. Like most everyone I have to have a second stage surgery to have a device inserted. I've also had this done twice before and it didn't work. My eustachian tube is shot and does not function properly. I can not believe with all this technology there is not something better that can be done. I've basically been told that it is strictly a maintain what hearing I have scenario. Insurance doesn't cover hearing aids, and barely covers much of the surgery cost. They tell you to follow up religiously to keep an eye on the potential progression of the cholesteatoma, but who can afford to keep having surgery over and over with no difference in hearing? Anyone else had any better luck?
I just had my 4th Cholesteatoma surgery 2 weeks ago. The surgery itself was bascially painfree for me. I think I took one pain pill the first day. As long as you don't bend over for the first week or so and take it easy. It is fine. The frustrating part for me has been keeping it dry, and the loss of hearing. I normally wear hearing aids and I am not able to wear any in that ear for 4 months until it is completely healed. Like most everyone I have to have a second stage surgery to have a device inserted. I've also had this done twice before and it didn't work. My eustachian tube is shot and does not function properly. I can not believe with all this technology there is not something better that can be done. I've basically been told that it is strictly a maintain what hearing I have scenario. Insurance doesn't cover hearing aids, and barely covers much of the surgery cost. They tell you to follow up religiously to keep an eye on the potential progression of the cholesteatoma, but who can afford to keep having surgery over and over with no difference in hearing? Anyone else had any better luck?
3 Replies |Watch This Discussion | Report This| Share this:CholesteatomaHi,<br /> <br />I just had my 4th Cholesteatoma surgery 2 weeks ago. The surgery itself was bascially painfree for me. I think I took one pain pill the first day. As long as you don't bend over for the first week or so and take it easy. It is fine. The frustrating part for me has been keeping it dry, and the loss of hearing. I normally wear hearing aids and I am not able to wear any in that ear for 4 months until it is completely healed. Like most everyone I have to have a second stage surgery to have a device inserted. I've also had this done twice before and it didn't work. My eustachian tube is shot and does not function properly. I can not believe with all this technology there is not something better that can be done. I've basically been told that it is strictly a maintain what hearing I have scenario. Insurance doesn't cover hearing aids, and barely covers much of the surgery cost. They tell you to follow up religiously to keep an eye on the potential progression of the cholesteatoma, but who can afford to keep having surgery over and over with no difference in hearing? Anyone else had any better luck?
Rod Moser, PA, PhD responded:
A cholesteatoma has the potential to make you completely deaf, or worse, kill you. Having regular ENT exams....for the rest of your life....is essential since it has already been proven that you have keep creating them.
We can be frustrated with the limitations of medical science (and insurance), but we can't change reality. Not all things can be cured or restored, so I can assure you that this is frustrating to your medical providers, too. If you were born a generation or two ago, surgeries of the type you are likely getting were not done.
How old are you now?
We can be frustrated with the limitations of medical science (and insurance), but we can't change reality. Not all things can be cured or restored, so I can assure you that this is frustrating to your medical providers, too. If you were born a generation or two ago, surgeries of the type you are likely getting were not done.
How old are you now?
Report This| Share this:CholesteatomaA cholesteatoma has the potential to make you completely deaf, or worse, kill you. Having regular ENT exams....for the rest of your life....is essential since it has already been proven that you have keep creating them. <br /> <br />We can be frustrated with the limitations of medical science (and insurance), but we can't change reality. Not all things can be cured or restored, so I can assure you that this is frustrating to your medical providers, too. If you were born a generation or two ago, surgeries of the type you are likely getting were not done.<br /> <br />How old are you now?
seekingimprovedhearing replied to Rod Moser, PA, PhD's response:
Yes I am aware that cholesteatomas can make you deaf. I have worn hearing aids for 3 years now. And yes I am very vigilent with following up with my ENT. I understand that all things can not be cured. I would like to see a better option than invasive surgery each time. I had read that there is an option of having a type of scope to clean out the cholesteotoma and would like to know more about that. I have dealt with the effects of providers getting frustrated. I had one tell me there was nothing else he could do...in a very unprofessional manner.They have been up front with me in telling me that the goal is to maintain what hearing I have left. I can't help thinking that repeated surgery causes yet even more scar tissue. I feel like I am an experimental specimen because I have never met anyone else who has this issue. Any articles you read are usally geared toward pediatric patients. Well I am 52 years old and would like to hear more about adult patients.
Report This| Share this:CholesteatomaYes I am aware that cholesteatomas can make you deaf. I have worn hearing aids for 3 years now. And yes I am very vigilent with following up with my ENT. I understand that all things can not be cured. I would like to see a better option than invasive surgery each time. I had read that there is an option of having a type of scope to clean out the cholesteotoma and would like to know more about that. I have dealt with the effects of providers getting frustrated. I had one tell me there was nothing else he could do...in a very unprofessional manner.They have been up front with me in telling me that the goal is to maintain what hearing I have left. I can't help thinking that repeated surgery causes yet even more scar tissue. I feel like I am an experimental specimen because I have never met anyone else who has this issue. Any articles you read are usally geared toward pediatric patients. Well I am 52 years old and would like to hear more about adult patients.
I don't believe you are alone....many adults struggle with repeated surgeries for recurrent cholesteatomas. As far as I know there are NO non-surgical options when it comes to hearing preservation. Using a fiberoptic scope to clean out a cholesteatoma does not remove the entire sac....this is a surgical procedure as well. Most ENTs elect to not only remove the cholesteatoma, but to create a mastoid cavity to prevent future problems. Did you have mastoid surgery in the past?
There is no excuse for unprofessional "throwing in the towel" attitudes, but ENTs can pick and choose who they treat. If your case is beyond their expertise, then they will just send you elsewhere.
Have you ever had a high-level evaluation at a large, university-based medical center ENT department? Often, the collaborative efforts of many specialist will offer you the best chance, but I don't think you are going to find a non-surgical option....especially when you are dealing with surgeons.
I wish you the best. Keep scouring the Internet for new treatment methods.
There is no excuse for unprofessional "throwing in the towel" attitudes, but ENTs can pick and choose who they treat. If your case is beyond their expertise, then they will just send you elsewhere.
Have you ever had a high-level evaluation at a large, university-based medical center ENT department? Often, the collaborative efforts of many specialist will offer you the best chance, but I don't think you are going to find a non-surgical option....especially when you are dealing with surgeons.
I wish you the best. Keep scouring the Internet for new treatment methods.
Report This| Share this:CholesteatomaI don't believe you are alone....many adults struggle with repeated surgeries for recurrent cholesteatomas. As far as I know there are NO non-surgical options when it comes to hearing preservation. Using a fiberoptic scope to clean out a cholesteatoma does not remove the entire sac....this is a surgical procedure as well. Most ENTs elect to not only remove the cholesteatoma, but to create a mastoid cavity to prevent future problems. Did you have mastoid surgery in the past?<br /> <br />There is no excuse for unprofessional "throwing in the towel" attitudes, but ENTs can pick and choose who they treat. If your case is beyond their expertise, then they will just send you elsewhere.<br /><br />Have you ever had a high-level evaluation at a large, university-based medical center ENT department? Often, the collaborative efforts of many specialist will offer you the best chance, but I don't think you are going to find a non-surgical option....especially when you are dealing with surgeons.<br /> <br />I wish you the best. Keep scouring the Internet for new treatment methods.
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