Cholesteatoma Message Boards

and

Cholesteatoma Topics

August 23, 2017, 12:19:26 AM *
Welcome, Guest. Please login or register.
Did you miss your activation email?

Login with username, password and session length
News: Please message me (username: admin) if you see spam type posts.  I will go ahead and delete them.  Thank you for your help, and stay strong.  -  Jeff /Cholesteatoma - Cholesteatoma.net Home Page
 
   Home   Help Login Register  
Pages: [1]
  Print  
Author Topic: Before you have a 1st cholesteatoma surgery READ THIS!  (Read 6356 times)
ammon44
Newbie
*
Posts: 10


« on: July 06, 2012, 10:54:14 AM »

Our son was also diagnosed with a likely congenital cholesteatoma when he was 6. He had lost hearing in his ear and the local ENT in Athens, GA had done tubes 3 times.  He told me he was just going deaf and there was nothing they could do.  At the urging of a colleague we took our son to an audiologist who said his nerve was fine but that something in the middle ear was not right.  We then went to see a hearing specialist doc in Atlanta who did not come in because of snow so we ended up seeing a female doctor who happened to come in and was tumor specialist. She immediately diagnosed the cholesteatoma.     We took our son  to Atlanta for 3  4+ hour canal wall up procedures.  Each time the cholesteatoma came back.  We did not want the canal wall down because it has to be professionally cleaned out every 6 months for the rest of their life and leaves a large opening.  I found Dr. Bruce Gantz at the University of Iowa medical center after researching this in ENT journals.  I am a dentist.  I found an article where several prominent ENT's were arguing about the best way to treat these nasty things.  Dr. Gantz learned a procedure in Europe where he does a canal wall down to gain access and ensure complete "tumor" removal.  (It technically is  not a tumor but does essentially the same thing).  After removing the canal wall and the mastoid air cells that create negative pressure and pull the ear drum in with a non-functioning eustachian tube, he then bone grafts the wall back.  The procedure is more than 90% successful.  They have been doing it for a few years now. It is a little more invasive then the canal wall up and our son's recovery was tougher with this one.  His neck was sore and he had a hard time keeping his head straight for a week but he was able to slowly stretch it out and he is 100% fine now.  On his follow up visit they found that his ear drum was in great shape, his eustachian tube has miraculously begun to function again.  They went back in through the ear drum and found that there was NO CHOLESTEATOMA! An MRI confirmed this.  We were thrilled!  His middle ear bones had been destroyed before his first surgery and all he had left was the foot plate of the stapes.  Dr. Gantz placed a titanium prosthesis to restore his hearing.  Our son seems to think he can hear better and we go back in a few weeks to find out how much of his hearing is back.  The prosthesis can become dislodged and if it does they have to go back in a redo it but as far as major cholesteatoma surgeries we are DONE!!  We thank God for his tender mercies on our sons behalf and for Dr. Gantz.  His office number is 319-356-2173.  He has trained several of his residents to do the same procedure and they are in several places around the country.  I wish we had only gone to Dr. Gantz the first time and it was worth the long drives from Atlanta.  My email is jasoncampbelldds@gmail.com if anyone would like to ask questions.  I will be glad to help.  This was an awful/humbling experience where we prayed a lot.  I feel for anyone going through it!
Logged
brahr3
Newbie
*
Posts: 1


« Reply #1 on: July 25, 2012, 06:25:12 AM »

Hi,

Thank you for sharing your experience.
Does the wall-down approach leave scars? Where was the incision made?

Brah R.
Logged
HuffDaddy
Newbie
*
Posts: 1


« Reply #2 on: September 08, 2014, 10:43:01 PM »

After reading this thread we called Dr Gantz about a year ago and we are glad we did. Our 11 year old son had already had the CWU procedure here in Kansas City and the desease grew back. We were looking at having a traditional CWD procedure by the same surgeon who we really liked but my son is a swimmer/triathlete etc, etc. This procedure just did not sound right. Surely there has to be a better way? Anyway we found this post and made a call, drove up to Iowa and had surgery scheduled within maybe 48 hours of reading this post. Everything went well with the big surgery and just 5 days ago we completed the follow up surgery (aprox 7 months later). They found one tiny little dead "pearl" which is what they like to see I guess and put in his titanium middle ear bones. So far so good. He is doing great and we are feeling really good about it. I guess our boy was loaded up with the stuff about as much as they have ever seen. Pretty much every open space possible was packed with the desease. Anyway, we love the Univeristy of Iowa Hospital and we are pretty darn happy we found them. I guess we will always worry about it growing back again some day but I do like the idea that this procedure reduces the likelyhood by removing the negative pressure that was continuing to form pockets and/or retractions in his ear drum. Hopefully my son's eustacian tubes will begin to function better as he grows. So far so good for us! Good luck to anyone reading this as well! I would be glad to answer any questoions about our experience so far.

Scott Huffman 816-210-3658
Logged
tabtait
Newbie
*
Posts: 5


« Reply #3 on: August 21, 2015, 10:41:49 PM »

hi just wondering how the hearing test came up as my son might be having a prosthesis put in to restore his hearing
Logged
Pages: [1]
  Print  
 
Jump to:  

Every one of you is strong. Always fight, and never give up. Your best years are ahead of you.

This page sponsored by: GoMain , a startup in Spokane, WA committed to mapping Electric Car Charging Stations and Gas Stations

on the GoMain Network , to improve drivers access to useful information while traveling.

Powered by SMF 1.1.14 | SMF © 2006-2011, Simple Machines LLC