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Would like to avoid cholesteatoma surgery for my 10yrold - does anybody have any suggestions?

Posted , 13 users are following.

cici73674
cici73674

My son has been diagnosed with Cholesteatoma this fall...we're scheduled to get a second opinion at Nemours ENT Dupont Hosp. but I am really looking for other non-invasive options.  He just had a left ear polyp removed last month, it showed inflammed tissue only.  He's had chronic left ear infections for at least 4-5yrs.  The fluid oozes & stinks regularly.  He's been regularly on antibiotics several times a year.  I had antibiotics during birth and he was given 7day dose antibiotics when born to avoid pnemonia - labor was very long & he had gotten stuck in the canal b/c a hand/fist was stuck smashed against his head.  He was rushed into NCIU at birth for breathing issues.  Been having ear issues since he was little.  In his younger years it was clear but now he's been having chronic left ear problems for 4-5yrs.  One time it was suctioned out & lasted a whole year w/0 problems.   Sometimes it's better in summer & he does attend some swim lessons when summer.  After this polyp removal the pus stinks worse than ever and is runny, yellowish.  His CT scan showed lots of dark perhaps fluid filled areas in left ear compared to the clear right side.  Another doc had 1st suggested adnoid removal.  The specialist we'll see at Dupont will be his 3rd opinion.  I really don't want him to have any further loss of hearing but the smell is very foul these days.  I have not tried any natural remedies & am confused where to start.  I do have an acupunturist & chiropractor we could try.  Does anyone have any suggestions what else I could look into?

2 likes, 30 replies

30 Replies

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  • Hope6767
    Hope6767 cici73674

    Posted

    Hey my daughter has had 9 cholesteatoma surgies. I know you said your doc has tried several antibotics. Did they try ciprodex ear drops? Also my doc also tried a medicine that he had in office, but i didnt know the name, but it was purple ear drops. The purple dye was so bad it stains everything. Her ears ran purple for days and i had to clean up with alochol wipes. I agree with the other person also. Cholesteatoma is nothing to mess with, my daughter has had all 3 hearing bones destroyed and facial nerve hit on the left side and her ear canal and skull bones hit on the right side. The skull caused a hole exposing the brain lining almost causing infection to the brain. I hope it goes well for you and your son
    • Hope6767
      Hope6767

      Posted

      Oh yeah we go to Vanderbilt in Nashville
    • cici73674
      cici73674 Hope6767

      Posted

      Well, this sounds like just an awful experience.  Yes we've done ciprodex many many time over many years for various kinds of ear infections. This many surgeries sounds a bit much to me.  I'm sorry this is something you have to go through for her and I hope very much that things will get better for you & her..
    • Hope6767
      Hope6767 cici73674

      Posted

      The reoeat surguries are bec cholesteatoma acts like cancer. When the doc does surgury they must get every choleateatoma cell out or it regrows. The doc is worried about saving a person hearing and hitting the facial nerve sometimes its impossible to get it all. My daughters estainal(sp?) Tubes dont work so the ear infections wont drain and festor in the middle ear and skin grows abnormality in there as well. Plus she has very sereve allergies which compound the problem. She is very sensitive to weather changes like season changes, sudden temp. changes, and even when the air pressure(like when rain comes in). She is doing loads better now.
    • cici73674
      cici73674 Hope6767

      Posted

      Thank you for futher explaination Hope...I'm learning so much I was not aware of before.  My sons ears have never drained properly either...I grew up in TX and had problems with allergies.  When I moved to San Francisco as a young adult - I could finally breathe.  The moist sea air helped clear up my sinuses immensely.  I'm glad to hear you feel the surgeries are helping her situation.  May she be blessed with good health this year!  Thank you again, Regards - Cici
    • eardam
      eardam Hope6767

      Posted

      Hello..

      I recently had a mastoidectomy last year in December i also had cholestema.. They told me after the surgery they had removed it.. So bite two months later im at the er again and once again they tell me i have acute mastoiditis.. How was your daughters surgery hag they removed all the cholestema at once? And if so did it re appear on its own again..please do share

  • cici73674
    cici73674

    Posted

    UPDATE for 10yrold son -  Mastoidectomy w/ tubes & rebuilding eustachian tube w/ grafting (from where, i don't know) scheduled in 2 days.  Serious otitis media in other ear & cholesteoma diagnosis in other.  Am extremely nervous... he'll miss 1 week school supposedly.  Please pray it will go well - and we won't have any more problems.  Thank you...
    • carol02333
      carol02333 cici73674

      Posted

      Just wondering how your son is doing. We did a radical mastoidectomy cwd in November. All of the small bones were destroyed. Deaf, but check ups show no re occurrence of the ctoma.
  • molly2323
    molly2323 cici73674

    Posted

    My son is having these issues too, had 3 sugeries and hes 8 years old. This is a serious conditions that can spread so make sure you have a good surgeon. Unfortunately it is back and they are saying a 4th sugery needed. I recently moved to Florida so looking for Orlando doctor who really knows what he is doing. Good luck with your child this is horrible.
    • carol02333
      carol02333 molly2323

      Posted

      Dr. Drew Horlbeck at Nemours is the absolute best. My 11 year old had a radical mastoidectomy, canal wall down in November of last year. The cholesteatoma had eroded away all of the bones and a large part of the mastoid.

      Dr. H. is a straight shooter. He has a great bedside manner with the kids, too. He splits his time between Nemours Pensacola, Jax and Daytona.

    • molly2323
      molly2323 carol02333

      Posted

      He is having surgery the 29th with Dr. Patni at Orlando Nemours hospital. This will be the first at this hospital, 4th surgery though in 2 years. I hope they know what they are doing I need this corrected and over with.
    • carol02333
      carol02333 molly2323

      Posted

      I have nothing but good things to say about Nemours. They have the highest standards of any medical group I have ever dealt with. My son has been a Nemours kid since birth. Aspiration of meconium put him in the NICU, and he was seen by respiratory and cardiology.

      You are in great hands. I will keep your family in my thoughts and prayers.

      My boy goes in tomorrow morning for a scar removal with Dr. H.

  • brian76236
    brian76236 cici73674

    Posted

    Don't want to come off harsh, get the surgery and get it done quick! The faster you catch this thing and get it out the less hearing he will loss and the less invasive it will be. If you wait and it grows the more invasive the procedure will be. Please please please do not hesistate on this as it can lead to far worse complications if you wait.

  • cici73674
    cici73674

    Posted

    1 Year Update for my son -  sorry its been so long all.

    One year ago yesterday his surgery was a great success!!  We are so happy to have all the ear problems gone.  He's passed all CT's with no reoccurance.  We are so blessed to have an amazing surgeon who knew what to do.  He apparently got all the bad cells!  Although, my son does have a tinanium hearing bell implant now because there was more ruined mastoid to be removed than the surgeon originally thought.  The complete surgery was approx. 3 1/2 hrs. plus recovery. .  The implant should last for approx 21 years.  We will cross future bridge of what else to do when he's an adult.  So, we are sooo pleased this is over.  One time & done.  He has healed up just remarkably and has no worries heading into his teens soon.

    Yes, we had mastoidectomy(left ear) with Tymphanomy (sp?) and tubes for both ears.  The tubes are still in, up to 2 years the surgeon said.  We will have another 6month check up in about 2 months.

    He's recovered amazingly well.  We had no restrictions after about 10 days of recovery.  I was a bit careful with summertime swimming etc. but we went to creeks, lakes, pools with no consequences.  All our checkups have been great so far!!

    Having the surgery instead of prolonging any more uncomfortable times for him was the best thing we could ever do for him.  The support of his friends/ church/ and school helped him immensely as this was very scary.  He couldn't give us enough hugs afterwards and to this day he is very outward in is daily gratefulness of life.  Mostly what I recommend to others is to do your research on your surgeon, to get 2nd opinions perhaps, and to not delay in this disease at all.  It is nothing to mess with.  The CT scans are total proof - is all I needed to see rather then delay with other natural treatments.  Please take care in choosing your surgeon though for the best results.  I told ours that I chose him because he had the best success rate around in only 1 surgery for cholesteatoma correction and that we expected no less for our son.  

    Good luck everyone & thank you for this forum!!

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