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 on: March 28, 2014, 02:48:59 PM 
Started by Marie - Last post by Bilateral
I have had two cholesteatoma's, the first at 17 and my second at 53. When I was 17 they didn't have the technology they do now. In August of 2013 they found another c-toma in my good ear. I also was in fear of being deaf. Before they took the tumor out I had a bone conducting implant put in to my skull. It was a fairly easy procedure and without it I would be deaf. I am so grateful to my surgeon and his support staff of audiologists. So there is hope, even if you lose the middle or inner ear.

 on: February 10, 2014, 04:16:28 AM 
Started by Royt777 - Last post by Royt777
2014 Feb. It's now been while since the operation. All going well. I do get wax build up but otherwise everything is good.

The root cause for my problem is Eustachian Tube Dysfunction. Unfortunately this is still there. I read recently that there are some experiments to use a blow up balloon to expand this, so perhaps in a couple of years I will be able to have that done. Them I am hopeful my hearing will be crystal clear.
But I remain very grateful for the operation and the success my surgeon achieved so far. 

 on: February 08, 2014, 07:23:16 PM 
Started by ammon44 - Last post by ammon44
Unfortunately the 2 surgeries that are commonly done for chol. removal are not that great.  Canal wall up: has a high failure rate.  Canal wall down: high rate of succesful removal but the patient has to return every 6 months to get it cleaned out, they are left with an earhole that can be triple the normal size and many of them can never swim again.

Our son had 3 canal wall ups about 6 months apart but it kept coming back. 
The ENT said his was diagnosed late, about age 5. We finally went to Dr. Gantz at the university of Iowa.  He did a new surgery where the basically do a canal wall down but modify it with a graft so that it heals normally, no bigger earhole or needing to get it cleaned by the ent forever. His hearing was also restored to about 75 perc in that ear. 

My advice would be to call Dr. Gantz office and consider going to him- insurance will pay if you get a referral from your primary care doctor.  If you cant travel that far ask them if one of his ENT's that he trained to do it is closer to you. 

Believe me it is worth going to him!  2 years after his last surgery our son has no recurrence, his hearing is about 65 perc in the bad ear, 100 perc in the other and he swims and does not need it cleaned out. 

 on: January 06, 2014, 01:36:45 AM 
Started by Marie - Last post by Marie
Is there anyone out there that can give me good or bad information on a couple of doctors located in Ohio. One is Dr. John Ryzenman of the Ohio Ear Institute. It sounds like it would be a rather large place but is only one doctor.  The next is the Lippy Group. The doctors there are Dr. Lippy and Dr. Berenholtz. If there are any doctors in Ohio who are experts in cholesteatoma and or repairing the middle ear bones or replacing please let me know who they are. Can middle ear bones be repaired?

 on: January 06, 2014, 01:16:51 AM 
Started by Marie - Last post by Marie
Can someone please explain to me the laser surgery and if it is a better alternative and why? Also I would like to know the different types of prosthesis available and which is the best. Does a prothesis replace all the hearing bones or are they replaced individually? Is it a one piece unit or different pieces put together?

 on: January 06, 2014, 01:06:09 AM 
Started by Marie - Last post by Marie
Does anyone know anything about the doctor at the Ohio Ear Institute? Anyone had any experience good or bad with him? I'm considering an appointment but want to get any information about this doctor before. His office visit is $500.00 That seems like an awful lot to me for just an office visit. I have no insurance and am self pay at the moment so you can understand why I want as much information about him as possible. Not from a health website where they recommend doctors either but from previous patients.  Someone with the name bassman had surgery with him and has it posted on here. I would like to be able to talk to bassman if anyone knows how to contact him I would appreciate it. Or anyone who has had experience with this doctor good or bad I would like to hear from. Thank you.

 on: December 28, 2013, 12:29:11 PM 
Started by Marie - Last post by Marie
What usually happens after you have been diagnosed with cholesteatoma? Are most bones in the middle ear removed? Do they usually reconstruct with a prosthesis? What quality of hearing is typical after that? Please I am so so scared about this. I want to know what is likely to happen to me. Would someone also explain the different types of cholesteatoma and what the typical prognosis with each is.

 on: December 26, 2013, 12:14:50 PM 
Started by Marie - Last post by Marie
I think I could have a c-toma and I am waiting to get an mri scheduled as a ct scan showed nothing. I]ve read right on here that is not so uncommon for whatever reason. Is there anybody who has had c-toma and been able to have successful reconstruction so that they could hear normally again. What do doctors consider successful reconstruction of hearing. Hearing at what percentage 10, 20, or what? Does anybody ever get most of their hearing restored with the prothesis of today? Please I am in mental agony over this. Not to mention my ear. Had myringotomy six weeks ago and ear has been ringing ever since. What would cause this tinnitus to start in such a way?It was immediately after procedure. I was still in the exam doctors room.  I need insight please.

 on: December 26, 2013, 09:54:10 AM 
Started by Marie - Last post by Marie
Hello Debs,
                 Is there anyone that you know of that has had a c-toma and been able to save their hearing bones? Are there any cases of successful reconstructive surgery where you can hear again? I had a myringotomy done six weeks ago and immediately after the procedure my ear started ringing and hasn't stopped since. It has gotten quieter in tone. Is that the way your tinnitus is as well? Have you found out anything about your other ear? I want to have an mri but I can't but that helmet on my head and lay still for an hour in a close area. I can't do. There is such a thing as a stand up mri but I have to find out about it. If I can't have that kind I won't be able to do it. What are the chances that the surgeons will be able to reconstruct your hearing bones and that you will be able to hear again?

 on: December 16, 2013, 04:47:20 PM 
Started by Sueb - Last post by Sueb
Hi, I found this site by trawling the net for info about my Ctoma.  I have has two ops, first one removed a Ctoma and mastoid after one CT scan showed I had a Ctoma and it was very near the brain lining. They removed the Ctoma and mastoid and also made the ear canal larger for six monthly inspections. After about a year I started to get acute pain and dizziness, after an uphill battle of knowing something was wrong I got a doctor to ask for another CT scan to show the brain lining was very thin and in his words it was a complete mess in the there, another 6 hour op.
Now 18 months after the 2nd op I have a low persistent pain around the ear especially at the back of the ear where the skull has indented in the mastoid area,  my balance is dire I look at the ground all the time to be able to walk in a strange place, uneven ground is a no no completely. I have terrible tinnitus all the time and completely deaf in the bad ear.  My consultant at long last has asked for a MRI scan to be done he said it can't be that bad as the pain has been around for some time so that proves it isn't anything to worry about.
Has anyone had pain after a gap of say a year after the operation?  this does not feel right and I think because I'm 'older' they are hoping I'll die first as gather the operation cost quite a bit to do. 
I'm in the UK and am having all this done on the NHS.

Any suggestions of what this constant pain is (mainly at night) is welcome. Thanks

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