Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 Hi, With my first, it took perhaps 10 years of visiting so-called ENT doctors, and I even had surgery at one point to remove an external polup from the outside of my ear (on the advise of a supposed expert in the field - he should have diagnozed the cholesteatoma as the cause instead of treating the symptom). I then moved to the US from the UK, and had a so called ENT doctor bizzarely determine that my ear problems were allergy related, until she finally gave up and referred me to someone who actually knew what he was doing, this guy was a Neuro-Otologist. The Neuro-Otologist took one look in my ear and immediately told me I had a Cholesteatoma, and he then proceeded to explain what it was, and what I needed to do about it. He confirmed his observation with a CAT scan, and then I scheduled surgery for 4 weeks later. It turned out that all of those years of ENT doctors not having a clue about Cholesteatomas had taken it's toll, and that the Cholesteatoma had devoured all of the bones in that ear (oddly enough, I could still hear, but the surgeon explained it was because the Cholesteatoma itself was conducting the hearing). After removing the Cholesteatoma and the inner ear bones, the surgeon put a Prosthesis in, which luckily enabled me to hear after the operation. With the second Cholesteatoma, I had a bad ear infection, and I knew what questions to ask when I went to the Neuro-Otologist. The diagnosis in this case was very quick, and I am hopeful that since I caught it early enough that the damage it has caused will be minimized. I know I probably sound like a broken record in saying this for the umpteenth time, but the key success factor when it comes to Cholesteatoma's is the expertise and experience of the Neuro-Otologist performing the removal. I have very negative memories of the NHS in the UK, and I really hope that it has improved over the past 10 years. You should be able to find a world class Neuro-Otologist in London though. Hope this helps. Dancarogoldring <carogoldring@...> wrote: i was wondering how long people took to get a diagnosis and what sizeand spread the ctoma had been? and how long have people been sufferingfor before the diagnosis? also any good surgeons in the south westpeople can recommend i live in exeter. mnay thanks. Caro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 Hmmm...I think it took me somewhere between 14 and 40 years to get diagnosed. The doctor used the term 'massive.' It took out all three bones of hearing, but other than that I think I got lucky. Struggling .... with hearing ... all my life. Suffering ... just a whole bunch of popped ears and ear aches ... it seems to be different for everyone. My heart goes out to the folks that struggle with dizziness and balance issues. I hate to see kids go through this, but I applaud parents that are instrumental in getting their kids diagnosed quickly. A lot of folks are just a little too ignorant of this disease for my liking - general practitioners need to know the signs. Matt carogoldring wrote: > > i was wondering how long people took to get a diagnosis and what size > and spread the ctoma had been? and how long have people been suffering > for before the diagnosis? also any good surgeons in the south west > people can recommend i live in exeter. mnay thanks. Caro > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 Yeah! Once you hit the right doctor it sure doesn't take long. Thankfully I got referred to an ENT that had seen it many times before. She looked at my ear for about 5 minutes. The second opinion from the neurotologist took about long enough to say " Whoa Nellie! " .... actually, I think he just said " Yup. " Matt daniel skempton wrote: > Hi, > > With my first, it took perhaps 10 years of visiting so-called ENT > doctors, and I even had surgery at one point to remove an > external polup from the outside of my ear (on the advise of a supposed > expert in the field - he should have diagnozed the cholesteatoma as > the cause instead of treating the symptom). I then moved to the US > from the UK, and had a so called ENT doctor bizzarely determine that > my ear problems were allergy related, until she finally gave up > and referred me to someone who actually knew what he was doing, this > guy was a Neuro-Otologist. The Neuro-Otologist took one look in my ear > and immediately told me I had a Cholesteatoma, and he then proceeded > to explain what it was, and what I needed to do about it. He confirmed > his observation with a CAT scan, and then I scheduled surgery for 4 > weeks later. It turned out that all of those years of ENT doctors not > having a clue about Cholesteatomas had taken it's toll, and that the > Cholesteatoma had devoured all of the bones in that ear (oddly enough, > I could still hear, but the surgeon explained it was because the > Cholesteatoma itself was conducting the hearing). After removing the > Cholesteatoma and the inner ear bones, the surgeon put a Prosthesis > in, which luckily enabled me to hear after the operation. > > With the second Cholesteatoma, I had a bad ear infection, and I knew > what questions to ask when I went to the Neuro-Otologist. The > diagnosis in this case was very quick, and I am hopeful that since I > caught it early enough that the damage it has caused will be minimized. > > I know I probably sound like a broken record in saying this for the > umpteenth time, but the key success factor when it comes to > Cholesteatoma's is the expertise and experience of the Neuro-Otologist > performing the removal. > > I have very negative memories of the NHS in the UK, and I really hope > that it has improved over the past 10 years. You should be able to > find a world class Neuro-Otologist in London though. > > Hope this helps. > > Dan > > */carogoldring <carogoldring@...>/* wrote: > > i was wondering how long people took to get a diagnosis and what size > and spread the ctoma had been? and how long have people been suffering > for before the diagnosis? also any good surgeons in the south west > people can recommend i live in exeter. mnay thanks. Caro > > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 My best 'guess' would be about 14 years of going to doctors in general practice and them misdiagnosing the problem as just a bad infection. Finally, I lost all hearing in the one ear and the antibiotic regimen didn't help. I got referred to a really good ENT who spent about 5 minutes looking at my ear. Then she said ... " I'm going to get a colleague to confirm what I think is the problem. " He took about 5 seconds and simply said " Yup! " I didn't know it then, but he was the leading otologist/neurotologist in the Pittsburgh region. He has done all three of my surgeries. So, for the first time around, the cholesteatoma was called 'massive.' I don't think my story is particularly unique. Many other people will say roughly the same thing. It's quite aggravating. By southwest ... you mean southwest U.K. I reckon ... I'd better let others answer that one. Matt carogoldring wrote: > > i was wondering how long people took to get a diagnosis and what size > and spread the ctoma had been? and how long have people been suffering > for before the diagnosis? also any good surgeons in the south west > people can recommend i live in exeter. mnay thanks. Caro > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Well-I had the same experience for over 10 years with a local ENT with very serious consequences. My friends finally convinced me to go see a specialist in San , CA who figured out in 10 minutes what was wrong that the other doctor couldn't tell me in over 10 years. It was as you say "massive" and wrapped around the facial nerve and pressing on the inner ear so bad that I was always told I had an inner ear infection because of the terrbile vertigo and nausea. I was always on antibiotics to no avail and the final straw was this past summer when was again I was diagnosed with an inner ear infection, placed on Levaquin which makes you extremely photosensitive to the sun. I went to Europe for three weeks (Vienna, Austria) and spent one week in Romania and we went to the beaches on the Black Sea and I was not out in the sun more than 10 minutes and was under an umbrella the rest of the time and ended up with sunburn on the top of my feet and the right foot turned into second degree burns and my lower leg and ankle swelled up so much you couldn't even see it, had to go to the doctor when I got back to Vienna (wonderful medicine there by the way) and I was laid up almost a week! Yes very annoying to say the least... All that is gold does not glitter, Not all those who wander are lost, The old that is strong does not wither, Deep roots are not reached by frost, From the ashes a fire shall be woken, A light from the shadows shall spring, Renewed shall be the blade that was broken, The crownless again shall be king. (J. R. R. Tolkien) ----- Original Message ----From: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Yes, about the same story for me, except my hearing is mainly gone in high frequencies and I can hear human voices in some of the lower frequencies. I probably lived with constant infections for about 5 years. Finally the primary care referred me to an ENT who scraped some gunk off and said that I had a cholesteatoma. I went to an olologist (the only one I could find) in the Dallas Fort Worth area, Dr . He fixed it up. It's been about 2 years since the surgery and no reoccurences or problems yet. Gerry --- In cholesteatoma , " Quote Link to comment Share on other sites More sharing options...
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