here is my advice

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, Let me frank with you. To have a surgery to look is not going to harm anything. The problem with C-tomas are that they are invasive and the CT scans aren't conclusive enough to show the full extent of damage. I would say that I have lost hearing due to the C-toma. If you would like to see how big they get, go look at my pictures in the member section. Surgeon said it was the largest he's taken out. I have a history much like yours. Tubes, grafting, hole in ear drum and major infection. I would rather have a dry ear and no hearing than chronic infections with a bone eroding tumor. CWU is preferred as a conservative approach because mass and bone density equals conduction. The tumor eats that mass and density away causing permanent damage that is never totally reversible. CWD

is an approach also done. It removes lots of mass in your ear structure thus making the hearing ability more difficult yet making it harder for the tumor to reform. Each approach has it's pluses and minuses. Each approach is determined based on the intensity of the tumor and severity of damage. The only way that assessment can be made is with your ear being incised and folded over to give the surgeon the unobstructed view necessary. I have had this done twice. My ear is still attached to my head and normal looking. I can still smile. In fact it was my surgeon's co-worker Dr. Herb Silverstein who created the machine that monitors the facial nerve. Surgery is not a magic bullet but it will slow or stop the damage. Maybe it will buy time. You're young like me. How much is your time worth? <faithfuljsj778@...> wrote: , It seemed to me that in parts of your post that you feel like a lot of surgeries are unnecessary but at the same time you are not against surgery. I am a strong believer in c-toma and what they can possibly do to you. Why? Growing up I had a ton of ear infections with the eardrum bursting with blood and all that good stuff. I never had tubes put in my ears however. As I was growing up I started to lose my hearing slowly but surely and

never really looked into it too much but noticed that I said what? a lot and could not hear people who spoke softly and also some things sounded far away when they were right next to me (if that makes sense?). I have had ringing in my right ear for most of my life. Also, everytime I would get "stuffed up" or get a cold my ears would stay stuffed up for a looonng time (fluid filled). This may sound weird but when I was younger I would turn my head upside down and my ear would "open up." Must have been the fluid moving around in my ear. I am 28 years old and had surgery May 30th to remove the c-toma from my right ear, mastoidectomy and tympanoplasty. I was lucky because the c-toma didn't destroy my ear bones, but I'm obviously in the early stages of getting this all taken care of. Now I have to have the left ear done. The reason the doctors finally suspected c-toma was because of the fact that I had a severe ear

infection that no antibiotic would clear up. I was to the point of wanting to literally end my life. The pain was awful. Finally, IV pain meds in the hospital took care of the pain but the fluid wouldn't clear up. All the reasons above were enough to convince me that I had something going on and needed to be taken care of. I just wouldn't want to see someone like you get to those points because you decided not to have the surgery. My ENT showed me on the CT scan where the c-toma had filled my mastoid bone. Your mastoid is suppose to be sort of a spongy bone so air can flow through I suppose but my mastoid was filled with c-toma material. I pray that you come to a decision before you have issues like mine. I'm sure other people have had worse happen than me but to be able to get the c-toma before it causes anything worse than what you have going on now would certainly be good. Take care,

>> Hello Everyone,> > I've been a member of the group for a couple of months now, and I've > been reading the digest a couple of times a week. However, this is > my first time to post.> > This is my situation- I would like any and all feedback or advice > anyone has. I have put off making a decision about what to do about > my c-toma long enough, and I need to make a decision relatively > soon. My situation is probably very similar to what many people have > experienced- I am 24 years old, and when I was a child I had two > sets of tubes put into my ears (the second set put in after the > first set fell out) to try and ameliorate the ear infections I was > having. Then, when I was about 9 years old I

had to get > tympanoplasty surgery (the ear drum skin graft surgery) on both > ears, since my ear drums had not closed properly from the tubes.> > That's the past. I had no problems with my ears for a long time, > about 13 years or so. Fast forward to last summer, summer of 2005, > basically one year ago this month. I swim at the gym as usual but > water gets in my left ear as I'm practicing flipping in the water > (learned not to do that again!). That night, it becomes clear my > left ear is infected, because it is painful, feels full, and is > giving off pretty unpleasant discharge. I go to the doctor, an ENT I > hadn't been to before here in Dallas, Texas where I live. We take > care of the ear infection, and all is well, but I come back 6 months > later (last December or so) for a check-up just so he can take a > look, and he orders a CAT scan since he thinks that

there could be a > c-toma forming in my left ear. (However, how long it's been there > seems to be something that is impossible to know, since I wasn't > having ENT check-ups basically between the ages of 10 and 23). > > I get the CAT scan done, and it comes back and my doctor says that > it is highly "suspicious" for a cholesteatoma. Thus far I have had 2 > opinions, and neither doctor has said firmly and conclusively, "Yes, > you have a cholesteatoma," but they both said that the odds are over > 90% and recommend surgery asap. They said that the Incus (one of the > three ossicles) was partly blocked from view in the CAT scan, so > that it's possible that the c-toma has already gobbled it up. Sure > enough, my hearing in my left ear is distinctly less than in my > right, which we confirmed with a hearing test. (Thinking out loud, > though, does that

necessarily mean that the c-toma has worn away one > of my hearing ossicles, or could that also be a function of a > perforated ear drum in that ear- I don't know. Apparently my ear > drum in my left ear didn't fully close up, even after the > tympanoplasty surgery).> > I apologize for being so verbose, but the devil certainly seems to > be in the details when discussing these issues...> > So here I am now with a choice to make. Both doctors I have seen, > one of whom is a nationally recognized otologist who I trust to > be "on top of his game", have said that I need to get c-toma surgery > and that I should definitely do it sooner rather than later. > However, I'm just not quite ready to sign on the dotted line yet. > Here's why:> > 1. It still isn't a certainty that I have c-toma, though of course > it is certainly the most likely possibility.

> > 2. The surgery almost seems to bring more problems with it than it > does solutions. My doctor told me that my hearing could actually be > LESS after the surgery, since they may have to remove my ossicles > and put in prostheses. Additionally, I'm not thrilled about the idea > of having 5 or more surgeries to remove this thing- the rate of > recurrence in "canal wall up" procedures, as my doctor recommended > we do (and which I agree with because of the unpleasant cosmetic > ramifications of the "canal wall down" procedure) is EXTREMELY high > (20-40% is what I was told). Last, and I've partly gotten over this, > but the possibility of facial nerve damage that would actually make > me lose the ability to move half of my face is very alarming to me. > The fact that my doctor said that this has never happened to any of > his patients or to any

patient at the ENT clinic at University of > Texas Southwestern Medical Center where his practice is is certainly > reassuring, but still, isn't there always a first? Given the choice, > I would choose hearing loss in 1 ear over lifelong facial paralysis > any day.> > 3. Another concern I have is just the general way that surgery is > approached by many in the medical community these days. I'm no > expert in this at all, but I have heard it said that upwards of 70% > of surgical procedures these days are unnecessary. Additionally, > they don't seem to be that successful. I take my own personal > experience as a case in point: Clearly the doctors who recommended > tubes be put in my ears (and the ears of millions of kids in my > generation) were not well advised. That seems to be one of the big > reasons why we have lists like this one! Additionally, the

> tympanoplasty I had done when I was 9 didn't apparently work all > that well. Surgery just doesn't seem to be the magic bullet that > it's promised to be. Today the doctors are telling me I need to get > surgery to correct a problem, but doctors also told my mother when I > was a child that I needed tubes in my ears to prevent future ear > infections. Clearly, the risks of tubes outweighed the rewards, > which is why I'm in the present situation. I'm not saying that > surgery is a bad thing, only that it seems we need more thorough and > conservative criteria before going down that road.> > I asked my doctor if it was a CERTAINTY that my c-toma was going to > grow and become increasingly problematic as time goes on, or if > there was a possibility that I could live with this c-toma, perhaps > having reduced hearing in my left ear, but never really having

> problems in the future. I found his answer very vague. (Again, he is > an expert in his field and I am lucky to have him as a doctor, but I > believe I have to approach all of this carefully). He said that Yes, > it is a certainty that my c-toma will grow and create some or all of > the resultant problems with it (hearing loss, infection, potentially > even worse). However, he said, the thing that is a variable is the > question of WHEN. He said it could be two weeks, or it could be 10 > years, he really had no way to know. > > To me, something feels off about this. How can something be a > CERTAIN problem, but we then have NO idea about the time frame? This > doesn't seem quite right to me.> > One specific question I have for everyone: Has anyone ever known of > someone who HAS indeed lost their hearing, had ear problems, or had

> meningitis or anything like that as a result of c-toma? The posts I > have read have been very helpful in discussing people's experiences > with c-toma surgery, recurrence, etc., but doesn't it seem a little > strange that, while we all know many people through this list who > have had experience with c-toma surgery, we don't seem to have a > whole lot of living examples of people saying, "I lost all the > hearing in my ear due to c-toma, and I sure wish I had gotten the > surgery," or anything like that. Perhaps they are out there, I'm > just not coming across them. Any information in this area would be > much appreciated, as I'm just trying to assess whether the fact I > have a c-toma means FOR SURE that it is going to grow and create > problems, or if it could be relatively dormant. Heck, for all I know > I've been living with this thing for the last 14 years or

so and > didn't even know it. Or, it could have grown after my ear infection > last year, and be growing more right now as I type. > > I apologize again for this verbose posting, but I wanted to give > everyone my full situation and describe my thinking on it thus far. > What I would like to ask anyone who was nice enough to read this > email is what their advice would be that I do at this point. Also, I > would love to know if there is anyone else in the same boat as me, > who is concerned about their c-toma and is looking into the > possibility of surgery, but who is as of yet unconvinced that it is > the best step. If there is anyone who has been diagnosed with c-toma > but decided NOT to do the surgery it would be good to hear from them > and understand their reasons for doing so. By the same token, if > people find my logic very faulty, I would

like to hear from them as > well!> > Thank You everyone, and I look forward to being a more active member > of the list. > > (Dallas, TX)>

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