Guest guest Posted May 13, 2002 Report Share Posted May 13, 2002 , That is so cool. I have read many articles written by Dr. Roland. That must give you great comfort knowing you have a great doctor. I will be thinking of you all on Friday. I know what it is like to have to wait. Good luck and please post when you can. Michele Hi > > First of all, here is a great article on pedicatic > c-toma: > > Cholesteatoma > Article by Dr. S. Roland on Pediatric c-toma > http://www.emedicine.com/ped/topic384.htm > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2002 Report Share Posted May 14, 2002 I wish you all the best and you will all be in my prayers. It is so hard to watch your children go through the ordeal of this. Particularly when you have experienced the operation yourself as I have and have also witnessed my son have several ops on his ears. Be strong and remember kids are strong. It sounds like you have a good doctor. C-Toma Dr Roland is my daughter's Doctor, he did her first surgery 4 yrs ago. He had scheduled her for TORP surgery the folowing year, but when he got in there the C-Toma had returned and he could only remove the C-Toma and graft a piece of cartiledge from the back of her ear drum to what was left of her Stapes. All the other bones had been eaten up by the first C-Toma. She recovered very well and had scored at the lowest end of normal on her Hearing test. This was fantastic considering she had very little hearing prior to this in that ear. He did have to do a wall-down proceedure also during this operation. She had great check-ups for almost 2 years, then the oozing infections returned and after two episodes he ordered he a CT to see what was going on because there aprared to be a piece of flesh rising out of her ear and the antibiotic drops had no effect on the problem. Turns out this was a polp caused by the C-Toma. And he said it was full of infection in her mastoid cavity. So we are scheduled for this Friday at 9:30 am. Please pray for her she's 10 years old and pretty tough, but her mom is't !!! It really does bother me that she has to go through this again, but I am so thankful that my Doctor is staying on top of this. I fully intend to just keep a routine appointment to keep her ear cleaned out. I think that is where we got a little lax at. Thanks for lending me your ears!! Michele <iambored97601@...> wrote: Hi First of all, here is a great article on pedicaticc-toma:Cholesteatoma Article by Dr. S. Roland on Pediatric c-toma http://www.emedicine.com/ped/topic384.htmI want to let you know that the CT scan does notalways show the true size of the c-toma. It seem likemore often than not, the c-toma is bigger when theyactually go in to do the surgery. My husband hasbilateral c-toma and has had 4 surgeries, 2 on eachear. Once you are diagnosed with c-toma, the risk ofit going bilateral increase, but does not mean thatwill happen. Your doctor will keep a close eye on theunaffected ear (at least he better). My husband alsohad no pain or dizziness. He had what he describes asa pressure in his ear and jaw. Some do have dizzinessand pain. It seem like the children have a high paintolerance and all of the kids on this site aretroopers. Before having the c-toma removed from myhusbands left ear, he could hear pretty normally eventhough all of his hearing bones were gone (eroded). The tumor was acting as the hearing bones so soundbounced off of the tumor and he could hear. After itwas removed, he was completely deaf in that ear butcan hear with a hearing aid.A facial monitor was used during all of my husbandssurgeries but is a controversial subject in themedical community. In my opinion, facial nervemonitors work and I think they should be used.Some of the kids recover faster than the adults,others slower. For most adults the average recoverytime is about 2 weeks. I'm not sure on children. A second look procedure is usually, but not always,done about 6 months after the first surgery. Cholesteatoma grows in places they can not see withoutdoing surgery so try to prepare yourself for a 2ndsurgery. Also, depending on what type of procedure isdone, your daughter may have to have her ear cleanedout in the office for the rest of her life. You willalways want to have her checked, even if she goesc-toma free for years. A lot of times cholesteatomais growing and you don't know it until it is large.I hope this is helpful and please know that I am nottrying to scare you. Cholesteatoma is scary bynature. There are a lot of parents that are memberswith children with this disease. I have no doubt youwill hear from some of them.Good luck and please keep us posted. We do care.Michele--- cmmbarry8 <cmbarry8@...> wrote:> Hi there!> > My 3 year old daughter, Camryn, was diagnosed last> week with c-toma. > Not knowing much about it, I did not have many> questions for the > doctor at the time. Now I have a million! She has a> CT scan tomorrow > and Thurs we meet with the ENT to let us know how> big it is. Her > pediatrician noticed it in March but nothing was> there in her > February visit. They say it is a Congenital C-toma> and she has never > complained of having any pain or dizziness so my> hope is is that it > is not too big. Her hearing test was great but it> sounds like people > can lose their hearing from the surgery. Or are even> faced with > facial nerves being damaged. I don't know if this> is as common in > kids as it is with adults or c-tomas that have grown> really big. Any > one have kids around 3 who went through this? I was> just wondering > what recovery is like for them and how long they> have discomfort or > pain? Does it usually come back? What is the chance> that it will be > in both ears? Since she does not have any symptoms> does this mean > there might not be much damage from the growth? Any> insight would be > helpful! Thank you for listening/reading! > > (Camryn's mom)> > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Hello Sandy and Steve, I had my first c-toma surgery on my right ear at age 8. All of my hearing bones were destroyed and reconstruction efforts did not work out for me. I can hear out of that ear limitedly with a hearing aid. At age 38, c-toma was discovered in my left ear. I had Canal Wall Down procedures in both ears and that has worked out well for me from the standpoint of no re-curring c-toma. I now wear a hearing aid in both ears and am able to hear fairly well. Best wishes for you and your son. Please keep us posted on how he is doing. Ilona sbrick2 <sbrick2@...> wrote: I was just wondering how many of you have had a c-toma in both ears. Our 7 year old son had his first surgery on his right ear last July. He is now completely deaf in that ear, as all of the bones were destroyed except the eardrum. We have another surgery scheduled for the week after Easter, on the Left ear, where another c-toma seems to have developed. We are very stressed at this point in time because if this one is as major as the last he will be left deaf. I am also a little nervous about another 5 1/2 hour surgery. I'd love to know if any of you have had or heard of this happening in both ears. Sandy and Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 Just to let you know--he doesn't have " bowel " problems. The problems are repeated infections in the " bowl " the area left after the canal wall down procedure. I'm hoping the infections are " repeated " because he wasn't getting proper medical treatment for them. > > > HELLO I WAS READING THE LETTERS POSTED THE ONE LADY WHO WAS TALKING > ABOUT THE SCHOLARSHIPS HER SON HAD DID THE BOWEL PROBLEMS RESULT FROM > THE CTOMA JUST WONDERING NEW TO THIS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Has anyone been referred to a doctor in the Toronto, Ontario area? We've been waiting for an appointment for a doctor at Sunnybrook and it seems to be taking a while to get any response. I would appreciate any feedback if you were there. London, ON is taking 7-8 months to get in at this time. Thanks Quote Link to comment Share on other sites More sharing options...
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