Hi, Quick question, did anyone who posts or reads this blog experience a polyp/granulation in the ear canal?  Was this removed and did it ever grow back after surgery?

My 3 year old daughter had a tympano-mastoidectemy on July 8th for congenital cholesteatoma in her right ear.  The surgery lasted 4 very stressful hours.  We LOVE our doctors at Johns Hopkins Hospital in MD.  The drs reported that the surgery went as well as possible, especially given the extent of the c-toma.  They believe that they removed all of the c-toma, but in doing so also had to remove pieces of the bones of hearing.  I suppose that is a small price in the big picture.  We went in for a post-op check-up a few days after surgery and then had our 1-month check-up in August.  Everything seems to be healing fine and as expected.  My daughter had a slight rash on her face in the hours after surgery, but that disappeared quickly.  Sounds like that may have been from the glue on medical tape used during surgery.  My daughter wore the padded-headband for two days after surgery and we picked up an extra headband for her favorite doll.  My daughter never had any discharge (ever), even after surgery.  Only a little piece of the packing possibly mixed with dry blood (about the size of a raisin) that fell out about a week after surgery.  At the 1 month check-up the doctor suctioned some of the dissolvable packing that had not drained on its own.  The incision behind the ear finally scabbed about 4-5 weeks after surgery - all very "clean" looking and barely noticeable, as it is tucked behind the ear.  Oh, and my daughter's ear protruded a little for about a week after surgery, but not any more.  My daughter has been complaint-free, with the exception of some sensitivity in the 24-hours after surgery.  There have been 3 separate occasions when she made a comment about hearing a "popping" noise, which I have heard is a common side effect.  The pre-surgery hearing test indicated that she had already experienced some hearing loss in her right ear (a shock), and now we expect her hearing is worse w/o the bones of hearing and also w/o the c-toma working as a conductor.  Our next ENT check-up is next week.  We will monitor my daughter's ear and plan the "second look" surgery for Jan or Feb 2011.  I think we will also schedule a hearing test and I would like to learn more about the prosthetic used to replace the bones of hearing.  Thank you to everyone for sharing your stories here.     

Dear Mike,  the best of luck with your son, as you might have read from my posts, my son went in on the 24th of August, so it is little over a week now since his surgery.  I also went for a second opinion and couldnt' be happier, as my the second ENT knew so much more about C-Toma. My son had a canal wall down surgery (the c-toma was 3 times the size of what the Ent had ever seen)... and guess what? After the first packaging was removed, he told the doctor that he could hear better than he had ever before!  He said the C-Toma was blocking the conductive hearing) I was so worried before, on the day and post surgery, and right now I am battling to keep my son still.  My biggest concern with my son was going under.  The Ent also told me the op would be an hour and a half, well 3 hours later, I was pretty much a stress ball.  But I am happy he took longer, because he said he made sure all the c-toma is removed and this was his preventative measure of making sure it never comes back.  I know what you and your family is going through, my son's brother of 7 years old was so stressed up that he flunked 3 of his tests.  The important thing to remember is that siblings, even though they fight sometimes, depend on each other.  So I gave my 7 year old the responsibility of looking after his brother. I spoilt both of them pre and post op so much and this took their minds off of what is coming.  I never told my 6 year old that the doctor would make a cut behind his ear, as I felt like this would scare him.  I just simply told him that he is going to go to sleep and the doctor is going to clean his ear.  This helped, the day of the surgery, he was so relaxed that they never even gave him pre-meds.  This was a bonus as pre-meds tend to make them vomit after surgery.  My son was in recovery for 15 minutes, he came out, had some fizzy cooldrink, ate a plate of scrambled eggs and popcorn, slept for another hour and was sent home.  He only complained once of pain and that was when the drip was removed, but the nurse gave us a little hint... Cream Soda!  He didn't feel sick, had no pain and was up and about in no time.  I trust and believe he will be fine, kids are such unique beings, they bounce back quicker that us adults.  Stay calm and tell your son that he will get a reward after the operation.  I told my son that he would get a puppy after his op and believe it or not, the minute he opened his eyes, he said to my husband:'Where is my puppy?' He appearently dreamt of his puppy while he was sleeping. My prayers are with you!  Stay strong and if you need any info, please write, this blog is great for clearing up some need to know's.

Mike,
           Glad to hear that you are getting a second opinion, sounds like your ENT has a plan and knows what he's doing. The second opinion will probably bring some peace of mind, or some additional ideas.  I can imagine that this is quite hard to go through with a little one. My son had a very serious surgery when he was 2 and it was nerve racking! Just be prepared, and stay on top of the pain meds for the first few days. I will keep you in my prayers!

 Keep us posted!

Tabitha

I will definetly keep you in my prayers! Your doctor is right about the recovery, it's fairly swift. Be prepared for nausea (not pain) to be the worst part. I kept a post-op diary on here of each part of my recovery. Mine was fairly small and did minimal damage, I was lucky. Anyway, it's under Tabitha's post op diary if you wanna check it out, it may be helpful!

Stay well, keep us updated!

I hope everyone is doing well.  Yes, Tabitha, I just turned 61 a couple of weeks ago and I honestly think my warranty ran out when I turned 45.  Prior to 45 I had never had a broken bone, never any stitches, never in the hospital.  After 45 I've had a hemorrhoidectomy, umbilical hernia repaired, appendectomy, gall bladder removed, broken bone in my foot, three discs fused in my neck, now I have a torn meniscus and worn-out cartilage in my left knee, and a cholesteatoma in my left ear -- Ain't life good!

On a more serious note, my visit yesterday to my ear specialist turned out pretty good.  C-toma was confirmed by CT scan.  However, it is not large.  Looks to be about the size of small grape.  From the CT scan it appears to be localized.  Inner ear looks clear.  Chambers look clear.  Mastoid bone looks pretty good, although he said he could tell by the fact that I had less air chambers in the mastoid bone of my left ear that I had a lot of ear trouble when young.  The biggest problem is that the C-toma is sitting right on top of my Incus bone.  Dr. said that it appeared the incus was just about gone and that was the reason for my "muffled" hearing in the left ear.  The vibrations are going into the malleus and then hitting the C-toma which acts as an insulator before the vibrations go into the stapes.  I am scheduled for surgery next week.  Dr. will remove the C-toma, clean up some of the mastoid bone, and rebuild my ear bones.  He says he thinks he can do all this Canal Wall Up, which suits me.  Surgery should last about an hour and a half, or so.  Recovery about one hour.  Then he wants me to come back the next day so he can check things out and maybe change my dressing.  I would appreciate your prayers.  I will let you know how it goes sometime next week.  Many blessings to all my new friends on here. 

Mike 

OK so our ENT did state that this would be the initial loss of 30-40 dB which is huge.  His schedule of events was:

1.  Remove C-toma (in about 2 weeks)
2.  4 week follow up to make sure things are healing and remove packing
3.  6 month follow up surgery to put in prosthetic bones in ear to restore his hearing to some extent

He was pretty optimistic about my son's recovery time also, so hopefully that works out too. 

But to your point:
I have a 2nd opinion meeting with another ENT Wednesday (tomorrow).  I have a meeting with the original ENT a week from today to discuss the procedure also.  No one is doing anything with him until I feel warm and fuzzy about them and their capabilities.  Also have a pre-surgery physical for my son and a tour of the hospital's facilities for the family so we have no surprises when we get there, and hopefully the place is less intimidating for our boy. 

From the 1st ENT's description, the C-Toma is 4x4x5 mm in size and right on his ear drum.  I could actually see it with the otoscope. 

My son knows this is coming, and I can tell he is scared, but we have been giving him a lot of attention and letting him have some more choices he can make to try and ease his mind a bit.  His sister is also worried.  Hardest part is not showing any of my own fear in front of him, he picks up on that very quickly.  Also he is a very active boy, so having him sit out for a week or two is going to be very challenging. 

I will follow-up with what's going on with him as things develop.  Thanks for any support.

Michael went to the ENT yesterday.  He removed the first packaging and said he is going to leave the second packaging in for another 2 weeks.  Im not sure whether this is good or bad.  The ear is still running and the ENT said the ear will be running for another 2 weeks or so.  He said the ear is healing gradually and in 3 months time the bone of the skull that was like egg shell behind the ear, should be strong again.  This all just seems like a very long process.  He also said that, because the canal is down, Michael must come in every so often for cleaning and under no circumstances is water allowed near the ear.  Michael also has picked up some flu from his 7 year old brother, anybody know if this will prolong the healing process?

Hey Mike.... I haven't read the other replies, so I hope this isn't a repeat. There are ENT surgeons out there who can reconstruct the hearing bones, I would suggest getting a 2nd opinion vs. leaving his hearing at a 40db loss, also there are BAHA inplants that can help with conductive hearing. I would suggest at least getting one additional opinion before completely trusting your surgeon.

Update soon!

Thank you so much for your reply's.  I am so greatful that this blog exists, because no one I know has ever gone through this, let alone know about C-Toma.  3 weeks ago I went to one ENT who thought my son had ear cancer, because of a polyp in his ear canal.  I went for a second opinion and I was very scared, the second ENT also did a canal wall down and after the 3 hour surgery said that the C-Toma was 3 times the size of anything he has seen in a child.  The mastoid bone crumbled like an egg shell when he opened it up and he said that the bone by the skull was so thin that he could see the lining of the brain.  The bones in the middle ear is gone and he could not save the eardrum.  He said the slightest knock to my sons head and this would have filtered into the brain. When this was told, I felt my heart sink into my feet. You see my son is in Grade 1 and the day before the surgery 3 boys in Grade 3, picked a fight with him, he is very small for his age, but the teachers told me that no one had a chance to hit him, as his brother (also Grade 1) came in and the two of them stood back to back and protected each other.  My son has appearently had this for 4 years and Dr. Gill said it is congenital.  The scary thing is that I have had my son from the age of 2 at soooo many doctors and they never picked this up...  Now everyone says that this is rare, I wonder is it really that rare, or are we just not informed.  Luckily I found this ENT, he is based at Fourways Hospital, South Africa (Dr. Martin Gill) he has been working with this for the past 22 years and he identified the C-Toma within 10 minutes and confirmed his finding with a CT scan.  Today is day 3 after the op, my son has not complained of any pain and gets quite irretated with mommy asking him if he has any pain. He does not want to lay down anymore. He has to see Dr. Gill on Monday to have the first packaging removed.  Emom, please don't feel wierd smelling your childs ear, when my sons ear started bleeding three weeks ago, I started smelling.  We got a saying here in SA, if looks bad, smells bad, it IS BAD. My thoughts and prayers are with you all!