Cholesteatoma for the SIXTH TIME!!! Advice please.

Hi my daughter has had 9 cholesteatoma surgeries. She now 15. Finally it has slow down. One problem during surgery is the doc has to get every cholesteatoma cell out or it will regrow back. Make sure you keep on top of this, because tbe disease likes to eat on stuff. My daughter has had all 3 hearing bones destroyed on her left side, her ear canal and part of skull bones on her right side. You are not alone and i hope this helps.

I am sorry you are having this problem. I do not think you are doing anything wrong. Your problem is an indication of how cholesteatoma is in some cases so insidious and aggressive in its behaviour. The dilemma the surgeon has is to try to preserve hearing function whilst trying to remove all the disease. It is often better to sacrifice hearing bone(s) than to risk leaving disease to (potentially) recur and cause further damage. There can be no absolute guarantee that there will be no recurrence.

I am so sorry to hear about your recurring cholesteatoma, but you are not alone. I am 30, a mum of 3 boys, my youngest is 8 months old. I am about to go for my 15th operation next week, another cholesteatoma removal. Dont worry, I havent had 15 cholesteatomas tho, I have had many opperations since a young child from grommets to typanoplasties, reconstructions, and fitting bone anchored hearing aids. This is my 4th cholesteatoma, and my conclusion if there is nothing you can be doing to stop them, slow them down. So please dont think it is your fault. I wish I could find a way to stop them growong too as it is hard with a family to keep on top of surgeries when you have kids to look after, but as far as im aware, there is nothing you can do to prevent the growth. It all depends of the condition of the inner ear. If yours is another like mine, its a mess!! So I wouldnt advise changing surgeons, he/she is probably doing thier very best. I have wondered if certains things might trigger the growth of them, like moulds, allergies, sugers, diet, but to be honest I think as it is just a collection of cells that multiplies and grows, those things may have no connection at all. So frustrating!

Your not doing anything wrong Cholesteatoma has a mind of its own; my daughter just had her 6th surgery, she is 27 w/ 3 kids.  Everyone is different, my daughter doesnt have much of a immune system because of all the antibiotics she was on as a child, and seems as though her allergy lists grows, (she is allergic to stitches now).  She has to go in and be checked every 1-2 months for a year then 2-3 months for another year because it keeps coming back; the last time it destroyed part of her skull and now her brain in falling through where it ate through the skull, so STAY ON TOP OF IT!  

Thank you all so much for your support and advice! I went to see my ENT yesterday and he says that he is going to try a wall-down mastoidectomy. He says that after this surgery, he'll be able to suction out the cholesteatoma when it starts to come back instead of doing surgery after surgery. Anybody have experience with this surgery? Did it work?

Yes my daughter had this done a couple years ago for the exact reason you are doing it for. It has helped so very much. The doctor can see better in the area and if they see anything going on they can work on it in the office instead of surgery over and over. The unfortunate downside is the ear canal opening is 4 times larger. My daughter keeps her hair long to cover it. Also if you weara behind the ear hearing aid with the ear mold, it is next to impossible to get the mold right. The best bet is a BAHA device, which really cool now, it uses Bluetooth tech and you can stream phone calls and music straight to the BAHA from a smart phone.

Hope, your daughter's story has been so encouraging to me. All I want is to know that I don't have to have a major debilitating surgery every year for the rest of my life. Let your daughter know that she and her children are in my prayers.

Hello Ischinke - 

It definitely doens't sound like anyone has done anything "wrong" in your case. Cholesteatoma all on its own can be relentless with leaving one tiny cell that is unable to be viewed even by the surgeon's microscope being able to grow back 

Please don't beat yourself up.

It's important to see an otologist or neuro-otologist instead of a general ENT - just so that the surgeon is as experienced as they can be for ears and especially cholesteatoma surgery. But still - there hasn't been 'magic' discovered yet to prevent multiple surgeries.  I know there is research being done that looks promising -but I'm not sure how far away it is from being able to be used on live patients. It's a substance that is activated by photodynamic therapy that in labs anyway has prevented any remaining cholesteatoma cells from being able to multiply without harming the surrounding "good" cells.  That isn't the only reason though that some people continue to get it - as it can recur from conditions within the ear (eustachian tubes, infections, etc...) so even that won't work in a lot of cases. 

I myself saw 11 otologists all over the US (luckily I have very good insurance and travel is covered with work) - and chose an amazing doctor in Arkansas who specializes in a special minimally invasive retrograde surgery that combines canal wall up with canal wall down - without leaving the patient with the larger ear opening, regular cleanings, less hearing, etc.. it enables him to get everything from the areas where it can hide.  There are several other doctors in the US (Chicago for one) and also some doctors in other countries that do the same surgery.  It doesn't guarantee no recurrences - but it helps to make sure the surgery is as complete as it can be, and it leaves the patient with the best chance for future hearing and quality of life.  Hopefully anyway -- we will see... as I just had my first surgery 2 weeks ago.  

It would be horribly frustrating it is to keep having it recur - but please know it definitely isn't you or from anything you are doing or not doing.  Please keep all of us informed on here and know that you have our support.

J...   

Hello, my name is Brooke

I'm 28 and my surgerys started when very young I got 5 sets of tubes before they figured out at 13 I had cholesteatoma I have now had 13 surgerys total and my left ear doesn't hear much it might pick up a few high pitched sounds every once in a while. I was told 4 years ago that my right ear is now showing signs and to prepare for it. They told me in a year I would mostly lose my hearing. I didn't. I now have 2 daughters who I thought I would never get to hear. They are almost 2 and 4 mos . Today I'm going to see my emt specialist, I now have drainage and ear pain in my right ear. I'm hoping for the best!