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Cholesteatoma Surgery
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dcox9999 posted:
I am to have surgery for Cholesteatoma in my left ear in about 3 months or so. My doctor said it would be about 4 hours for cyst removal and rebuilding of the internal structures. Would those that have already gone through this please post your experiences as I would like to understand what others have already gone through. Thanks in advance for that. Doctor Moser, would you have any comments on what is done during the actual surgery, and expectations for after surgery in regards to pain resulting from the surgery ( if any ). My doctor also said that I would probably have to have checkups for the rest of my life to watch out for recurrences. Does that tally with your experience in treating Cholesteatoma patients ? Thanks for your responses.

Dave
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Rod_Moser_PA_PhD responded:
As you may know, Dave, a cholesteatoma is caused by prolonged eustachian tube dysfunction (with negative middle ear pressure ? the eardrum is ?sucked in?) and chronic otitis media.

A cholesteatoma is a debris-filled and chronically infected "sac" -- a retracted pocket behind the eardrum. The symptoms of a cholesteatoma include a chronically draining ear, usually with a foul odor. A feeling of fullness, intermittent pain, dizziness, or one-sided facial muscle weakness can also occur.

Untreated, cholesteatomas can increase in size and damage the tiny middle ear bones, eventually eroding the inner ear and facial nerve, leading to permanent hearing loss and/or dizziness. In very rare instances, severely invasive cholesteatomas can lead to very serious complications.

Cholesteatomas are typically treated by surgically removing the debris-filled sac. An open mastoid cavity is often surgically necessary to control future infections, which tend to reoccur. These mastoid cavities must be periodically cleaned through the lifespan, so ongoing ENT care is vital.

Each person and each cholesteatoma is different. One person's experience may not be the same as yours, but it would be nice if you heard from a few actual patients. Yes, any surgery results in some post-surgical discomfort, but that is something that is individualized as well. Some require pain medications for a few days, others do not. As a primary care clinician, I do not do these surgeries at all -- I leave them up to ENT specialists that have more surgical expertise. I trust that you have a good ENT with lots of experience.
 
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dstiles36 responded:
Hi Dave, I am scheduled for surgery on my left ear Feb. 16th. I am so nervous and scared! I have never had surgery before so this is a first for me. My cholesteatoma has gotten worse over the years and I have lost 50% of my hearing in that ear. The Dr. told me he would be able to bring back 30%. I will let you know what happens. I wish you luck with yours! I am in the Dfw area and there are only 3 doctors who perform this surgery here but makes me feel good that they specilize in this kind of surgery. Anyways...Good luck

Darlene
 
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astrid78 responded:
Hi Dave,

I had cholesteatoma surgery on my right ear 6 years ago . You are fortunate to have both the removal and reconstruction in one surgery. I had removal and than waited 3 months for a prosthetic incus. It was difficult walking around without that little bone!! The pain was tolerable although unexpected. I had a hard time with it the first time. I awoke feeling like i was hit on the side of the head with a baseball bat. After 2 weeks I was fully recovered-both times. I can not stress the importance of having regular check ups with a good ENT particularly one who specializes or has experience in cholesteatoma surgery. Now, 6 years later I have another one that went unnoticed by a not so good ENT. I went in stating that I had symptoms similar to my first experience with cholesteatoma. After a year and a half of seeing this Dr. who said he didn't see anything, I was recently diagonosed with another cholesteatoma in the same place as last time. I sought out another ENT who has experience with cholesteatoma because my dizzy spells have gotten increasingly worse. This Dr. spotted the cholesteatoma right away! So it looks like I will be having the surgery again in a few weeks. You will find that you feel much better once the cholesteatoma is removed. Just make sure you keep up with a good ENT since they do come back. I wish you a safe surgery and a successful recovery!
 
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dcox9999 responded:
Thanks again for your explanation of cholesteatoma. I had my first surgery two days ago, Monday, April 20, 2009. It was different from other operations that I had previously undergone due to the amnesiac portion of the anesthesia. Four hours on the table then come to in recovery. I was very wobbly the first night, and there is some pain which is being controlled by use of Tylenol. It turned out that the hearing loss will be taken care of with another surgery in about 10 months with the installation of a prosthesis. I assume this equipment will take the place of the small non-existent bones that would normally conduct sound ? Also, I have questions about low breathing and high heart rate. I was told that I received a beta blocker for the heart rate. What causes the heart rate to be so high ( I think over 100 ) when I was at about 60 pre-op. What can I do to improve the breathing before the next operation ? I must say that I have a great combination in the ENT and the anesthesiologist, as well as the other staff in the OR. Thanks again.

Dave
 
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dcox9999 responded:
Hi Darlene, You can see the first surgery experience was quite different than what I thought it would be. My old ideas were based upon previous surgical experience. That has changed. I am very hopeful, but always realistic as well as far as the hearing being restored. My surgeon was always very upfront about the cyst removal and some rebuilding being the priority and if he could have done the hearing restoration, he would have. Surgery nowadays is quite a bit different than my past experiences. I was very apprehensive, but I will go into the next one very differently in terms of thinking. I hope you had a good result and wish you all the best with your hearing restoration.

Dave
 
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dcox9999 responded:
Hello. Thanks for your response. As you can see, the procedures did not quite go as planned, but will be completed in about 10 months. I have a great set of doctors and hospital staff that worked on me. I am sorry to hear that your cholesteatoma has come back, and I agree that I will feel better without the cyst. I am just waiting for the pain to subside in the next few days and the surgical swelling to go down.

Dave
 
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bill2967 responded:
hi dave hope you are doing well after the surgery just have one qustion what was the doctors name that did the surgery because i need it done and i would like to talk to him any info you can give would be great thanks and get well soon

bill
 
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dcox9999 responded:
Bill, Please contact me again in a few days. I apologize for not getting your reply as it happened. I am going in for the second surgery in a week, so getting ready for that. The information on the doctor won't be released in a public forum like this. I don't think it would be very good of me to do something like that. I can only suggest that you go to your primary care physician and get a referral to a specialist in your area, which is what happened to me. Just so happens that I was very fortunate to be referred to the surgeon I have. Also, perhaps Dr. Moser could give you information on how to locate a surgeon that specializes in cholesteatoma.

Dave
 
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Rod_Moser_PA_PhD responded:
I am very sorry, Bill and Dave, but WebMD does permit direct referrals to specific doctors or clinics. Most university-based medical center ENT departments will have highly-skilled surgeons, experienced in dealing with cholesteatomas. Many community-based ENTs may be equally as skilled, so get your primary care provider to help find t he best in your community or surrounding area.
 
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dcox9999 responded:
Thanks. The gist of what I was saying is what you advised, which is to go through one's primary care doctor for a referral. Again, thanks for having this forum Dr. Moser. It is a great way to share support. Signing off until next week after installation of titanium implant. I look forward to being able to use a phone again as well as hearing the birds in the spring!
 
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strwbryblonde responded:
My ENT doctors said that I have a cholesteatoma as CT x ray showed. This new ent says that I do not have a cholesteatoma and will not even look at the ct and not order new ct x rays. I have requested a second opinon, but I do not know if they are good doctors. Does anyone know any good otologoists in Sac CA Area? Is the second opinon the way to go? I have HMO and my primary dr has to refer me, however there is only 1 ent in my network. This second opinon is out of my network. Thanks.
 
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Rod_Moser_PA_PhD responded:
Your current ENT can give you some names....Some HMOs allow a second opinion out of your network if approved in advance. It is always your right to have a second opinion.

I am sorry that I cannot provide you with a specific name. WebMD rules do not permit me to do that, but you should not have any problems finding a good otologist in a large, metropolitan area.
 
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grami10 replied to dcox9999's response:
I had surgery 2 months ago and still have fullness in my ear with tintinus. Is this normal? The doctor said this is normal that it takes awhile for it to heal. They got it all and he saw the roots. Had to do a little reconstruction to my earing bone. I am concerned any surgeon does about 4 of these a week.


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