Cholesteatoma :: Three Times Now - Hereditary?
Jul 29, 2010
I have had a cholesteatoma three times now and was wondering if it was hereditary? as my little girl has had some hearing problems (only minor) but hoping that it is not?
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Jul 29, 2010
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View 1 RepliesCholesteatoma :: BOTH Ears?
Has anyone experienced a recurrent cholesteatoma in one ear and now a cholesteatoma in the other?
I experience chronic pain and chronic migraines as a result of the 3 surgeries I've had in my right ear. I have severe tinnitus. So severe, that there are times when I literally cannot hear anything around me. Another thing is that sound gets extremely distorted should a voice or sound be too high or too low - you can imagine how difficult this is being a PreSales IT Architect who speaks with a number of people every day.
Also, my right eyelid and right side of my face fall a little lower than my left. In addition to this, I feel pain outside the ear as well and in the muscle that has been relocated three times for each surgery. This causes me pain when I simply move my head in any direction...even when I make facial expressions. Dizziness and vertigo are almost a daily occurrence with some days worse than others...It feels like the room is in a blender. Driving is also becoming increasingly difficult as I often feel like the car is still moving when I come to a stop and vice versa....It's a laundry list of things, I know.
I now have a cholesteatoma in my LEFT ear with my 1st surgery on that is on 11/13/15.
Cholesteatoma:: Radical Mastoidectomy - Air Travel?
My husband had radical mastoidectomy this summer. This was his second surgery (cholesteotoma returned after first surgery) and this time, his ENT closed off the Eustachian tube in the affected ear.
We are thinking about taking a trip next year (Winter of 2017) and my husband is concerned that he will not be able to fly because of the pressure changes.
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Cholesteatoma :: Experience With KTP Laser Surgery?
I just got diagnosed this year with a Cholesteatoma, after a heavy mid ear inflammation in June, following a severe cold. Before that I had no problems with my ear.
My hearing was virtually lost during the inflammation but recovered pretty well, I guess only a 30 % has gone in my right ear. I live in Spain, in the mountains, and have no problems while I am here.
But I just visited the Peruvian Jungle, and it happened two times that after 3-4 days in the Jungle, my ear starts draining liquids and my eardrum perforates. After being treated two times with antibiotics in Peru, and moving to an area where the air is much dryer, the inflammation goes away within a week.
Now, last Friday I talked with my ENT specialist, and he has put me on a waiting list to have it surgically removed. According to him, it is a 'removal' operation, with a high chance of losing my right side hearing completely, as he 'thinks' the ossicles are infected.
When I asked him if a KTP laser is being used, the answer I got was that they don't use KTP laser in these kind of interventions in Spain.
Since I do not want to lose my hearing capacity in the right ear completely, I understood from reading about Cholesteatomas and treatments that a KTP laser assisted intervention has a high chance of preserving the ossicles, and thus hearing capacity.
There is an ENT specialist who has published about this, Dr. Fairley.
Does anybody has experience with him ?
Has anybody had this type of surgery with a KTP Laser ? How were the results ? I am very interesting in your story, As I am considering paying for the intervention myself in another country.
Prices are fluctuating a lot for this procedure, so if anyone knows a good ENT specialist (Cholesteatoma & KTP Laser) I would appreciate your opinion and experiences.
Cholesteatoma :: Permanent Hearing Loss
I am a 25 year old male and have recently been diagnosed with Cholesteatoma in my left ear. My case is a bit different it seems as until July 2015 I had a perfectly good left ear. I picked up a cold and ear infection while on holiday in Spain in July 2015 to which a week or so later I was hearing bells going off in my ear constantly. I was put on three different doses of antibiotics and ear drops between July and October. I began to get white discharge from my ear about a month after I had the infection and this discharge turned yellow a month or so later. It was not until January 2016 that I was able to see a ENT specialist who diagnosed me and this was confirmed with a recent CT scan. I have not had any hearing (besides the bells going off in my ear) since I first got the infection back in July. After I had the CT scan and hearing tests I have been told that my ossicles have been eroded and I am very unlikely to get hearing in my left ear again. The infection has dried a little bit from some ear drops which the ENT specialist gave me and I have an MRI scan this week as they want to determine if surgery is absolutely necessary before going ahead. I have seen two ENT specialists at this NHS hospital. This morning I woke to find my ear slightly wet again and with a tiny bit of blood which prompted me to go and see the hospital to which they assured me that this was normal and can happen.
It it seems as though a lot of people have problems with their ears in childhood which leads to cholesteatoma. Has anyone been in a similar situation to myself? The more information the better.
Note: I had sinus surgery in February 2014 and the CT scan I had in preparation to that operation has shown no signs of cholesteatoma.
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When I told the Doctor this she said it would be best if I had blood tests done.
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The doctor wrote on the results that a transferrin saturation above 55% was highly indicative of Hereditary Hemochromatosis (94% predictive).
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The same applied with my brothers and sisters (family of 5).
Shouldn't there be a history of at least one family member with high iron levels?
Is there any way that transferrin saturation levels can be raised temporarily and result is a flawed blood test?
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I Binge Drink once a fortnight/month
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I Eat a lot of takeaway food.
I Was taking Centrum Advance supplements sporadically in the lead up to the blood test.
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