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  • Mastoiditis or Cholesteatoma

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    Old 10-05-2013, 11:22 PM   #1
    Marie 67
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    Mastoiditis or Cholesteatoma

    I would like to hear from someone who has had one of both. What are the symptoms? Do you have hearing loss? What caused these? I'm scared that I might have one or both of these conditions. I had a sinus infection that turned into an ear infection with effusion (fluid). I got the fluid drained three weeks ago but I am not hearing like I should. Could I have one or both of these diseases? I am having a hearing test tomorrow and I am terrified of what I will find out. I know it's not going to be good. I am also sick with worry about having something like this and would like to know what the symptoms are? I've seen pictures of people with a knot or bulge behind their ear. I know this is mastoiditis but is it always like that? Is a ct or mri the only way to know for sure if you do or don't have mastoiditis or cholesteatoma? Someone please post as I have been sick for three months and I'm afraid there might be an underlying condition like this. Can one recover hearing loss after having had mastoiditis or cholesteatoma? Everything that I have been informed of says you don't. If time is of the essence to save ones hearing if a person should have one of these ailments I would like to know. Any doctors in my area that deal with diseases of the ear take weeks to get into see. Please post so I can have more information than is on the web.

     
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    Old 10-06-2013, 09:07 AM   #2
    Isaiah1
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    Re: Mastoiditis or Cholesteatoma

    Quote:
    Originally Posted by Marie 67 View Post
    I would like to hear from someone who has had one of both. What are the symptoms? Do you have hearing loss? What caused these? I'm scared that I might have one or both of these conditions. I had a sinus infection that turned into an ear infection with effusion (fluid). I got the fluid drained three weeks ago but I am not hearing like I should. Could I have one or both of these diseases? I am having a hearing test tomorrow and I am terrified of what I will find out. I know it's not going to be good. I am also sick with worry about having something like this and would like to know what the symptoms are? I've seen pictures of people with a knot or bulge behind their ear. I know this is mastoiditis but is it always like that? Is a ct or mri the only way to know for sure if you do or don't have mastoiditis or cholesteatoma? Someone please post as I have been sick for three months and I'm afraid there might be an underlying condition like this. Can one recover hearing loss after having had mastoiditis or cholesteatoma? Everything that I have been informed of says you don't. If time is of the essence to save ones hearing if a person should have one of these ailments I would like to know. Any doctors in my area that deal with diseases of the ear take weeks to get into see. Please post so I can have more information than is on the web.

     
    Old 10-06-2013, 09:39 AM   #3
    Isaiah1
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    Re: Mastoiditis or Cholesteatoma

    Firs of all, it sounds like you are in panic mode. Don't be. Both situations arg fixable. I have had both of the conditions you asked about. In 1995, I had a tympanoplasty and mastoidectomy. Because of years of ear infections, the bones in my middle ear were in vey bad shape. My hearing had suffered. To correct this, I had surgery to remove a cholesteatoma. At the same time, the surgeon removed infected air pockets in the mastoid. After this, the surgeon repaired my eardrum. While he was doing the surgery, he also placed a TORP (Total Ossicular Replacement) prosthesis in my ear to help correct the hearing loss. The surgery is done in an outpatient surgery center, and you go home the same day with a dressing over the ear. You can remove the dressing the next day, but you will need time to recuperate (as with any surgery). I did great for 17 years. In 2012, I got a bad ear infection with effusion, and my hearing went way down in the affected ear. I had surgery again. This time, the surgeon replaced the TORP with a titanium version. My hearing improved dramatically. There was no cholesteatoma, and the mastoid bone was in good shape. My recovery took a little longer this time (getting older stinks). ;-). Long story short, the problem is fixable. Go to a good ENT for evaluation, and he/she will determine what needs to be done.

     
    Old 10-06-2013, 10:12 AM   #4
    Marie 67
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    Re: Mastoiditis or Cholesteatoma

    How much hearing have you lost since you first had this years ago? Where was your surgery done? If I have to do something like this what type of place would you recommend to do the surgery? What kind of symptoms did you have in 1995 before you had the first surgery? How were you diagnosed? Did you have to have a ct or mri to make the determination? Had you ever had tubes in your ears for fluid accumulation?

     
    Old 10-06-2013, 10:40 AM   #5
    Isaiah1
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    Re: Mastoiditis or Cholesteatoma

    Quote:
    Originally Posted by Marie 67 View Post
    How much hearing have you lost since you first had this years ago? Where was your surgery done? If I have to do something like this what type of place would you recommend to do the surgery? What kind of symptoms did you have in 1995 before you had the first surgery? How were you diagnosed? Did you have to have a ct or mri to make the determination? Had you ever had tubes in your ears for fluid accumulation?
    I can't tell you exactly how much my hearing has been affected without the actual audiology reports. I can tell you that before the most recent ear infection, my hearing loss was rested mild to moderate. After the most recent infection, my hearing took a major hit, but as said, the surgeon (ENT) placed a new prosthesis in the bad ear, and my hearing is MUCH better. My symptoms prior to 1995 were just recurrent ear infections, starting when I was a baby (I'm 50 now). When I went in for treatment of another infection in 1995, the ENT referred me to an ear specialist. He determined what needed to be done. The most recent surgery was done by an ENT. Personally, I would seek out an ear specialist, rather than a general ENT. Who drained the fluid out of your ear when you had the infection with effusion? Before this most recent surgery, I did have a CT scan. I had tubes in my ears as a baby and again after the 1995 surgery (as part of the surgery). Tubes are no big deal either.

     
    Old 10-06-2013, 11:24 AM   #6
    Marie 67
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    Re: Mastoiditis or Cholesteatoma

    I think Castellon is just a regular ent. I know that he does surgery but I don't know what kinds. When you say specialist do you mean a neurotologist? What kind of prothesis is best? Is this the same type that they use in a stapedectomy? Is that the kind of surgery you had? I had a tympanogram at least I think that is what it was at the end of August from the first ent that I went to see. This ent wouldn't drain my ear and kept telling me to use flonase. She had me go in this booth and put this earplug like thing in my ear. She said that it looked like my eardrum was moving. She also said that I didn't have fluid in my ear anymore. I had it drained a couple weeks later and Castellon told me that my ear was half full of fluid. Doesn't sound very good. So I know what that other ent said was crap. She made the statement," You don't have a tumor and your not deaf so keep it in perspective". I thought that was a terrible thing to say to a patient who has been suffering for two months. This ent also works at one of the divisions of the otolaryngology departments of the major university here in Columbus, Ohio. I would say the name of the school but I've had some problems with posting certain information on these boards and I don't know if I can say it or not. It's the only major state university in town so it shouldn't be to hard to find out if someone wanted. I thought that those university hospitals were suppose to be the best. I guess one never knows. Is a tympanogram an accurate way to determine if someone would have a cholesteotoma?

     
    Old 10-08-2013, 06:29 PM   #7
    Marie 67
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    Re: Mastoiditis or Cholesteatoma

    Can having effusion for two months in your ear cause you to have permanent conductive hearing loss? Why did you need the prothesis replaced after just one ear infection? How does it get damaged? Does it damage like real ear bones do? Everybody that I've talked to says that fluid doesn't do damage unless it's in there for a long time. Is that true? I know that glue ear is worse as it is thick like pus that hardens and damages the bones that way. I didn't have that. I'm wondering why I'm not hearing normal. Everytime I cry or yell my eardrum vibrates and I hear fluid like noises. I had my ear drained of fluid three weeks ago and yesterday the ent said that the incision where it was drained is still open. I find it hard to believe that a tiny hole like that would cause that much hearing loss and all of these symptoms. If I hear fluid noises could my ear be filled up with fluid again and it not be draining out the incision hole in my eardrum? The ent said when he first drained my ear that it was half full of fluid and that was why it wasn't visible when he looked inside my ear because depending on what position I was in the fluid level was below my eardrum. I know that fluid re-accumulates often after a myringotomy. I'm just wanting to know why I'm not hearing like I should and I think that the doctor may have missed something.

     
    Old 10-09-2013, 08:17 AM   #8
    mspgh
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    Re: Mastoiditis or Cholesteatoma

    I posted a reply to your questions in my thread about my stapedectomy experiences, I hope its helpful.

    After reading a little bit more about the problems you are having, and now that I realize that you are not suffering from otosclerosis, I wanted to add a couple thoughts...

    First, you definitely do seem to be in panic mode. I understand that. I have been there too, and I have come all the way through to the other side. Try to keep calm, be patient and keep things in perspective. Conductive hearing loss can be correctable with surgery, so remember that. Many stories of sensorinearual loss have been posted here, and that condition is irreversible.

    Second, you should get a second opinion if you are not happy with your current doctor. Yes, you should definitely see an ear specialist, not a general ENT. You have ALOT of questions and you aren't going to find answers to many of them on this board. Self diagnosis wont help either. Find a good doctor in who you can be confident.

    Good luck to you!

     
    Old 10-29-2013, 06:52 AM   #9
    Marie 67
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    Re: Mastoiditis or Cholesteatoma

    Isaiah1,
    What happened with the ear infection with effusion? Why did it have this effect on your ear?

     
    Old 10-29-2013, 06:54 AM   #10
    Marie 67
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    Re: Mastoiditis or Cholesteatoma

    Isaiah1,
    What happened with the ear infection with effusion? Why did it have this effect on your ear?

     
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