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Cholesteatoma? PIOG

Posted by on May. 8, 2009 at 3:45 PM
  • 10 Replies

My oldest son (just turned two) had surgery on his right ear on March 3rd to remove a mass of cholesteatoma.  When it was removed, it caused a small hole in his eardrum, and the doctor took a small skin graph from the ear canal, and put it onto the eardrum to help heal the hole.  We had gone in for two check ups since then, and everything seemed to be healing well.
We took him in today for his last check up (he wouldn't have gotten another one for at least a year/year and a half) and his doctor was very shocked to see that there was another mass of cholesteatoma visible, in a slightly different spot than before.  (The first was kind of on the side, behind his eardrum, this one is at the bottom, kind of behind his eardrum)  And, there was still a hole in his drum.  Dr. said that it was possible that this second mass was there all the long, but not big enough to be visible (even on the CT scans we had done right before his first surgery to see where it all was) and that it growing like it did now could be keeping his eardrum from healing.  So, my little guy has to have another surgery to remove this mass.

Has anyone else had to deal with their child having cholesteatoma?  Did you have surgery to remove it?  If you did, did it come back, or was there more than originally thought?  If you didn't, did it ever cause problems?  Has anyone had a child (or yourself) with a hole in the eardum that wouldn't heal?  What did you do?

by on May. 8, 2009 at 3:45 PM
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Replies (1-10):
PreggoPebbles
by on May. 8, 2009 at 3:49 PM

If you haven't had any experience with this, please bump this along for me!!  Thanks!

sk_tennyson
by on May. 8, 2009 at 4:02 PM

No idea so heres a bump 

rayzensun
by on May. 8, 2009 at 4:06 PM

I never had that but I do have holes in my eardrums from a childhood surgery,

I dont notice any difference because I was so young but I have 80% hearing.


pagan 2rayzensunpagan 1

PreggoPebbles
by on May. 8, 2009 at 4:12 PM

What kind of surgery did you have?

Quoting rayzensun:

I never had that but I do have holes in my eardrums from a childhood surgery,

I dont notice any difference because I was so young but I have 80% hearing.

 


goldd_e_loxx
by on May. 8, 2009 at 4:19 PM

I had three tympanaplasties (that's the part where they use a piece of skin to patch a hole in the ear drum).  One of them healed leaving a small hole.  So they did a procedure in the office to remedy it...it still makes me cringe to think about!  The doctor (whom I absolutely adored, and still do, even though he did this to me! LOL) poured some stuff (equivalent to potent acid floor cleaner that will remove floor wax) into my ear to make the ear drum "mad" (I guess meaning inflamed or irritated) then put a tiny paper disc over the hole and packed the ear canal with medicated packing stuff.  Then they gave me two advils and a diet coke.  I was about 12 when it happened.  Let me tell you I have never felt anything more painful in my entire life.  It lasted for less than a minute but I would rather go through labor again than that!  My point being...if they want to do this to your baby, make sure they either give him good meds or knock him out!  Of course this was over ten years ago...and I'm sure things may have changed since then!

I'm so sorry your baby has to go through all this.  Ear problems are at the top of the list as far as pain is concerned, so I know he's hurting.  Poor baby!  Good luck, and I hope he heals well and fast! 

rayzensun
by on May. 8, 2009 at 4:23 PM

I had tubes put in that had complications

(water pressure damage to the eardrums)

Quoting PreggoPebbles:

What kind of surgery did you have?

Quoting rayzensun:

I never had that but I do have holes in my eardrums from a childhood surgery,

I dont notice any difference because I was so young but I have 80% hearing.




pagan 2rayzensunpagan 1

PreggoPebbles
by on May. 8, 2009 at 4:29 PM

Oh goodness!  I would make my hubby take him in the office if they have to do that to him!  I don't want him to accosiate me with that!  LOL  You said one of them had the hole, I assume the other healed just fine?
Thanks for your reply.  He doesn't actually seem to be bothered at all by this, and he's had hearing tests done to check for damage, and there hasn't been any yet.  I hope it stays that way, we'll take him in again for more testing after this next surgery.  He never seems to be hurting, so I'm thankful for that.

Quoting goldd_e_loxx:

I had three tympanaplasties (that's the part where they use a piece of skin to patch a hole in the ear drum).  One of them healed leaving a small hole.  So they did a procedure in the office to remedy it...it still makes me cringe to think about!  The doctor (whom I absolutely adored, and still do, even though he did this to me! LOL) poured some stuff (equivalent to potent acid floor cleaner that will remove floor wax) into my ear to make the ear drum "mad" (I guess meaning inflamed or irritated) then put a tiny paper disc over the hole and packed the ear canal with medicated packing stuff.  Then they gave me two advils and a diet coke.  I was about 12 when it happened.  Let me tell you I have never felt anything more painful in my entire life.  It lasted for less than a minute but I would rather go through labor again than that!  My point being...if they want to do this to your baby, make sure they either give him good meds or knock him out!  Of course this was over ten years ago...and I'm sure things may have changed since then!

I'm so sorry your baby has to go through all this.  Ear problems are at the top of the list as far as pain is concerned, so I know he's hurting.  Poor baby!  Good luck, and I hope he heals well and fast! 


PreggoPebbles
by on May. 8, 2009 at 4:32 PM

Oh, that's what my Mother-in-law had done years ago.  She's about 75% deaf in one ear, and 90% in the other.  I was afraid that this problem could be hereditary and have something to do with my hubby's side of the family (a few people have hearing issues, along with his mom) but the doctor said it probably wasn't.  He doesn't know what caused it for my son.  It's generally pretty rare to have it like this so young.

Quoting rayzensun:

I had tubes put in that had complications

(water pressure damage to the eardrums)

Quoting PreggoPebbles:

What kind of surgery did you have?

Quoting rayzensun:

I never had that but I do have holes in my eardrums from a childhood surgery,

I dont notice any difference because I was so young but I have 80% hearing.

 

 

 


rayzensun
by on May. 8, 2009 at 4:36 PM

yea I know what thats like, I had breast cancer at 13, but you know what - everything you go through really does make you stronger.

even though he's not having much fun now he'll be a stronger man because of it

Quoting PreggoPebbles:

Oh, that's what my Mother-in-law had done years ago.  She's about 75% deaf in one ear, and 90% in the other.  I was afraid that this problem could be hereditary and have something to do with my hubby's side of the family (a few people have hearing issues, along with his mom) but the doctor said it probably wasn't.  He doesn't know what caused it for my son.  It's generally pretty rare to have it like this so young.

Quoting rayzensun:

I had tubes put in that had complications

(water pressure damage to the eardrums)

Quoting PreggoPebbles:

What kind of surgery did you have?

Quoting rayzensun:

I never had that but I do have holes in my eardrums from a childhood surgery,

I dont notice any difference because I was so young but I have 80% hearing.






pagan 2rayzensunpagan 1

PreggoPebbles
by on May. 8, 2009 at 8:59 PM

bump

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