Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Good Morning Dianne, First let me welcome you to the group. You are going to hear some horror stories regarding this disease and some not so horror stories. The bottom line is that at this time there is nothing you can do to treat c-toma other than surgery. It is not really that bad. The surgery will be harder on you than your daughter. There are several options the doctor has once he/she gets into the ear depending on how bad the c-toma has spread. The extent of the damage usually is not known until the doctor gets a first hand look during the surgery. I had surgery on April 4 and was back to work on April 15. The tumor was everywhere and destroyed two of my hearing bones. I was scheduled for 3 hours and was in the OR for a little over 6 hours. The first surgery is mostly to remove the tumor. Depending on how bad it is, another surgery is recommended 6-12 months down the road tohave anther look for reqrowth and for any reconstruction that may be needed. All this info can be found at the different sites that are noted on the group home page. You can also read about individual experiences on the bulletin board. It is scary but the surgery is necessary. There are a lot of children from age 3 and some younger who have gone through this and they all seem to deal with it well. You will most likely hear from some of the parents. There are no scheduled chat times as of yet for the chat room but I am sure someone would be happy to chat if they are available. Well, gotta get ready for work. Tell your daughter to hang in there and that once everyone reads your plea, there will be prayers flying all over the place. You can be sure that I will keep her in mine. Dave Concerned Mom ... I am new to all of this. I have a 16 year old daughter who has had recurrent ear infections all of her life. We've done the tubes ... the antibiotics, the drops, etc., etc. She has had her eardrums perforate on a number of occasions. For the past four months we have been going back and forth to specialists because her last tempanogram "flatlined" in her right ear. I was informed that she had a very large "pocket" in both ears but that her left ear seems OK, her right ear, however may require surgery. After several visits, and now a Catscan we have approached the subject of the possible need for surgery. I have been moving through this thing thinking that meant another set of tubes. Tonight I got on line with a pamphlet the doctor sent me home with on "Cholesteatoma" and was shocked to find that this is not just a "pocket" in my daughter's ear. I am somewhat horrified at what I am reading. Is there a good time for me to get on line to join you guys in your chat room? I would love to hit this site when it is the most active as obviously, you are all very well versed in this subject, and I am obviously the new kid on the block. I need to do some homework fast ... my daughter doesn't want anything to do with this surgery. The more I read, though, the less it looks like that is an option. Please let me know if there is a good time for me to log on or send me any info that you think will be helpful for us to look at. Thanks,Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Hi, Dianne. Welcome to the group. We are all here to help you and answer as many questions as we can. Cholesteatoma is a scary thing. My son was first diagnosed at age 3. He is now 8 and is doing well, although he has only about half of the hearing in his left ear. The c-toma recurred numerous times, but each time, he came through the surgery with flying colors. Your daughter is older, so her recovery may take longer, but I'm confident that she will do just fine. There are so many wonderful doctors out there and you have to make sure you find one you are comfortable with. If not, then you need to get a second opinion (and make sure that c-toma surgeries are routine for him/her). I've become very frustrated with the information that is out there regarding this disease, especially to those who know nothing about it. I wrote several letters to magazines, as well as to Oprah, and have only heard back from one (Parent's Magazine). If they decide to use my story, I will be " contacted directly " (I'm waiting...). What saddens me is that the majority of people have never heard of it and when someone has been diagnosed with it, they tend to think nothing of it. If people only knew the truth, they would be horrified! I wish we had a chat room for this group. I find it difficult to keep up with all the postings. If anyone knows how we can get this started, please let me know (and I'd be glad to help out). Dianne, please keep us posted on how your daughter is doing. We will be praying for you! Take care, Terri (parent of Troy) Concerned Mom ... I am new to all of this. I have a 16 year old daughter who has had recurrent ear infections all of her life. We've done the tubes ... the antibiotics, the drops, etc., etc. She has had her eardrums perforate on a number of occasions. For the past four months we have been going back and forth to specialists because her last tempanogram " flatlined " in her right ear. I was informed that she had a very large " pocket " in both ears but that her left ear seems OK, her right ear, however may require surgery. After several visits, and now a Catscan we have approached the subject of the possible need for surgery. I have been moving through this thing thinking that meant another set of tubes. Tonight I got on line with a pamphlet the doctor sent me home with on " Cholesteatoma " and was shocked to find that this is not just a " pocket " in my daughter's ear. I am somewhat horrified at what I am reading. Is there a good time for me to get on line to join you guys in your chat room? I would love to hit this site when it is the most active as obviously, you are all very well versed in this subject, and I am obviously the new kid on the block. I need to do some homework fast ... my daughter doesn't want anything to do with this surgery. The more I read, though, the less it looks like that is an option. Please let me know if there is a good time for me to log on or send me any info that you think will be helpful for us to look at. Thanks, Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Without trying to scare you or your daughter ...she needs surgery asap. You will find lots of help and support with this group. As I type I am suffering another "bad earache" no infection no discharge just a shooting pain that has now been for three days. I have an op booked for next week and am actually looking forward to it!! Cholesteatoma is a serious disease and she will need to have checks probably for the rest of her life. I am sure at the beginning you are shocked as most of us are but it gets better as time goes by and easier to accept. There is no cure that I know of and surgery is a must not an option. Good luck Audrey Concerned Mom ... I am new to all of this. I have a 16 year old daughter who has had recurrent ear infections all of her life. We've done the tubes ... the antibiotics, the drops, etc., etc. She has had her eardrums perforate on a number of occasions. For the past four months we have been going back and forth to specialists because her last tempanogram "flatlined" in her right ear. I was informed that she had a very large "pocket" in both ears but that her left ear seems OK, her right ear, however may require surgery. After several visits, and now a Catscan we have approached the subject of the possible need for surgery. I have been moving through this thing thinking that meant another set of tubes. Tonight I got on line with a pamphlet the doctor sent me home with on "Cholesteatoma" and was shocked to find that this is not just a "pocket" in my daughter's ear. I am somewhat horrified at what I am reading. Is there a good time for me to get on line to join you guys in your chat room? I would love to hit this site when it is the most active as obviously, you are all very well versed in this subject, and I am obviously the new kid on the block. I need to do some homework fast ... my daughter doesn't want anything to do with this surgery. The more I read, though, the less it looks like that is an option. Please let me know if there is a good time for me to log on or send me any info that you think will be helpful for us to look at. Thanks,Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Hi Dianne and welcome. A "pocket" is how c-toma was first described to me when our then 6 year old daughter was diagnosed (three years and three surgries ago). I don't know why the doctors can't be more upfront about what this condition is and how serious it is. Please explain to your daughter, since she is old enough to understand, that surgery is a necessity for her. It is not an optional thing. The surgery is, in most cases, very straight forward with no complications. If left untreated, it can have severe and devastating complications. This needs to be stressed to her. It wouldn't hurt to let her go to some of the different sites (look in the bookmark section of the group home page) and let her read about it so she really understands what c-toma is and if left untreated what kind of complications there can be. I'm sure when she sees how devastating leaving it untreated can be, she will accept the fact that she needs the surgery. In the meantime, I don't know if the doctor has discussed this with you, but I'd like to stress the importance of not getting water in her ears. We use the silicone ear plugs and they seem to work pretty well. The more I read about c-toma, I am realizing what a part water does play in this condition. It actually promotes the growth and recurrence of c-toma. Please feel free to e-mail me directly or post to the group if you have any questions. We are all here to support each other. Sending hugs your way (mom of Alyssa age 9) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 As everyone has told you there are no options. It is a tissue tumor, and the quicker they get it out the better, if it invades the lining of the brain, it can cause meningitis, stroke or worse. She will bounce back quick, as all the members with children can tell you. All of our prayers are with you and your daughter. At sixteen, she has a life ahead of her. Scary as the thought of surgery is, the consequences of not having it are worse... Concerned Mom ... I am new to all of this. I have a 16 year old daughter who has had recurrent ear infections all of her life. We've done the tubes ... the antibiotics, the drops, etc., etc. She has had her eardrums perforate on a number of occasions. For the past four months we have been going back and forth to specialists because her last tempanogram "flatlined" in her right ear. I was informed that she had a very large "pocket" in both ears but that her left ear seems OK, her right ear, however may require surgery. After several visits, and now a Catscan we have approached the subject of the possible need for surgery. I have been moving through this thing thinking that meant another set of tubes. Tonight I got on line with a pamphlet the doctor sent me home with on "Cholesteatoma" and was shocked to find that this is not just a "pocket" in my daughter's ear. I am somewhat horrified at what I am reading. Is there a good time for me to get on line to join you guys in your chat room? I would love to hit this site when it is the most active as obviously, you are all very well versed in this subject, and I am obviously the new kid on the block. I need to do some homework fast ... my daughter doesn't want anything to do with this surgery. The more I read, though, the less it looks like that is an option. Please let me know if there is a good time for me to log on or send me any info that you think will be helpful for us to look at. Thanks,Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Hi Diane, Welcome to the group. I can appreciate your concern for you daughter. Surgery is never something to be taken lightly, however, in this day and age it is so much safer than it ever was. My biggest worry I think going in was that I would be terribly nauseated and sick post surgery. But anaesthetics aren't what they used to be, and I felt no nausea and only occasional dizziness at first. That quickly passed and my biggest problem was the packing in my ear (which I still have). When your daughter wakes up she will have a large dressing around her head, but that should come off on day 2, and she should then only have packing and a small dressing over her ear. There is some discomfort due to the incision, and discomfort inside the ear, but the doctors and nurses are pretty good at keeping you pain free. Then it is only a " soreness " , and hat goes away eventually. Once the incision is healed, she won't even see it, because it is tucked away behind the ear. The hardest part is for you waiting because the surgery can last hours, mine was over 4 hours. Bring a good book with you and try to relax. It is normal for it to take that long. My family didn't know, and they were really worried, cause I told them it wouldn't take long for the procedure. I think it is pretty hard for your daughter because of her age and probable fear of " hospitals/doctors/surgery " . It is scary for anyone facing surgery, but hopefully the hospital staff will allay her fear and yours. If you trust your surgeon, it is half the battle. Good Luck Lynn Concerned Mom ... > I am new to all of this. I have a 16 year old daughter who has had > recurrent ear infections all of her life. We've done the tubes ... > the antibiotics, the drops, etc., etc. She has had her eardrums > perforate on a number of occasions. For the past four months we have > been going back and forth to specialists because her last > tempanogram " flatlined " in her right ear. I was informed that she > had a very large " pocket " in both ears but that her left ear seems > OK, her right ear, however may require surgery. After several > visits, and now a Catscan we have approached the subject of the > possible need for surgery. I have been moving through this thing > thinking that meant another set of tubes. Tonight I got on line with > a pamphlet the doctor sent me home with on " Cholesteatoma " and was > shocked to find that this is not just a " pocket " in my daughter's > ear. I am somewhat horrified at what I am reading. Is there a good > time for me to get on line to join you guys in your chat room? I > would love to hit this site when it is the most active as obviously, > you are all very well versed in this subject, and I am obviously the > new kid on the block. I need to do some homework fast ... my > daughter doesn't want anything to do with this surgery. The more I > read, though, the less it looks like that is an option. Please let > me know if there is a good time for me to log on or send me any info > that you think will be helpful for us to look at. > > Thanks, > Dianne > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Hi Diane, Not to sound scary, but if your daughter has c-toma, she HAS TO HAVE SURGERY. Surgery is the only known treatment at the date in time. Check out the bookmarks section and add me onto your Messenger. My id is iambored97601. We haven't had a formal chat yet, trying to figure out the time zones, but a few of us chat on Messenger. Three of us actually had a voice conference and it was neat to be able to answer questions in person. Cholesteatoma will eventually invade your brain and lead to brain abscess, meningitis, and then death. Not pleasant. We have a member in surgery today and she will post her experience as soon as she is able. There are also messages in the archives from various members who have recently had surgery. If you have any question, as I am sure you have noticed, you will get lots of answers. Welcome to our group. As always, we are glad/sad to have you. Michele --- diannemcal <diannemcal@...> wrote: > I am new to all of this. I have a 16 year old > daughter who has had > recurrent ear infections all of her life. We've > done the tubes ... > the antibiotics, the drops, etc., etc. She has had > her eardrums > perforate on a number of occasions. For the past > four months we have > been going back and forth to specialists because her > last > tempanogram " flatlined " in her right ear. I was > informed that she > had a very large " pocket " in both ears but that her > left ear seems > OK, her right ear, however may require surgery. > After several > visits, and now a Catscan we have approached the > subject of the > possible need for surgery. I have been moving > through this thing > thinking that meant another set of tubes. Tonight I > got on line with > a pamphlet the doctor sent me home with on > " Cholesteatoma " and was > shocked to find that this is not just a " pocket " in > my daughter's > ear. I am somewhat horrified at what I am reading. > Is there a good > time for me to get on line to join you guys in your > chat room? I > would love to hit this site when it is the most > active as obviously, > you are all very well versed in this subject, and I > am obviously the > new kid on the block. I need to do some homework > fast ... my > daughter doesn't want anything to do with this > surgery. The more I > read, though, the less it looks like that is an > option. Please let > me know if there is a good time for me to log on or > send me any info > that you think will be helpful for us to look at. > > Thanks, > Dianne > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Dianne- Welcome to the group. I wish I had this group when I originally was diagnosed with c-toma in my mid to late teens. I don't know that my doctor had a really good handle on what c-toma was at the time. Well, five surgeries, only nerve hearing in one ear, and four doctors later, I have a good doctor who deals with this A LOT. Be sure to question the doctor about how often he deals with this. My experience has taught me that a few times a month is not enough. My current doctor see this all the time. It seems like that's the key - he's very experienced. Yes, I can't hear out of that ear anymore, but that is due to the previous doctor's inexperience. When all is healed (I just had surgery again on the 10th), I'll get a hearing aid. Look at the bookmarks section, it has lots of good information. As the others have said, surgery is necessary. I can empathize with your daughter. I wasn't too thrilled about having surgery either, but I'm glad I did. All I can tell you is what someone else in this group said - " Knowledge is power. " Find out all you can and ask lots of questions of your doctor, especially those that seem awkward like how long they've been doing this, etc. Best of luck!! - > I am new to all of this. I have a 16 year old daughter who has had > recurrent ear infections all of her life. We've done the tubes ... > the antibiotics, the drops, etc., etc. She has had her eardrums > perforate on a number of occasions. For the past four months we have > been going back and forth to specialists because her last > tempanogram " flatlined " in her right ear. I was informed that she > had a very large " pocket " in both ears but that her left ear seems > OK, her right ear, however may require surgery. After several > visits, and now a Catscan we have approached the subject of the > possible need for surgery. I have been moving through this thing > thinking that meant another set of tubes. Tonight I got on line with > a pamphlet the doctor sent me home with on " Cholesteatoma " and was > shocked to find that this is not just a " pocket " in my daughter's > ear. I am somewhat horrified at what I am reading. Is there a good > time for me to get on line to join you guys in your chat room? I > would love to hit this site when it is the most active as obviously, > you are all very well versed in this subject, and I am obviously the > new kid on the block. I need to do some homework fast ... my > daughter doesn't want anything to do with this surgery. The more I > read, though, the less it looks like that is an option. Please let > me know if there is a good time for me to log on or send me any info > that you think will be helpful for us to look at. > > Thanks, > Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 In a message dated 05/22/2002 2:53:49 PM Pacific Daylight Time, psmorris@... writes: You may have already heard this stuff and I'm sure some of my science is challengeable but this is the story as straight as I know it. I'm told that a retraction pocket isn't necessarily a cholesteatoma but it is the start of it and who really knows if the doctor isn't using the term euphemistically. It usually means that there is a poor or none functioning Eustachian Tube (the thing that equalizes pressure in the middle ear to that of the outside world). When this tube malfunctions, negative pressure builds up in the ear and the eardrum is sucked inwards often attaching itself to the roof of the middle ear, the base, or both and sometimes enveloping the delicate hearing bones. Even in this position the eardrum is self renewing and continues to shed dead skin which can't escape hence the term 'pocket'. It's the dead skin that forms the cholesteatoma which as it grows moves into other parts of the ear, destroying bone and tissue and acting as a vehicle for infection. Thats what I meant to say! Thanks Phil for such a great explanation! (Alyssa's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Hello Dianne You may have already heard this stuff and I'm sure some of my science is challengeable but this is the story as straight as I know it. I'm told that a retraction pocket isn't necessarily a cholesteatoma but it is the start of it and who really knows if the doctor isn't using the term euphemistically. It usually means that there is a poor or none functioning Eustachian Tube (the thing that equalizes pressure in the middle ear to that of the outside world). When this tube malfunctions, negative pressure builds up in the ear and the eardrum is sucked inwards often attaching itself to the roof of the middle ear, the base, or both and sometimes enveloping the delicate hearing bones. Even in this position the eardrum is self renewing and continues to shed dead skin which can't escape hence the term 'pocket'. It's the dead skin that forms the cholesteatoma which as it grows moves into other parts of the ear, destroying bone and tissue and acting as a vehicle for infection. The one reassuring thing about a cholesteatoma is that its not particularly fast. You'll know it's bad when the grosser symptoms start to arise like nasty ear discharge, pain, facial paralysis and loss of balance. Personally I lasted 17 years from being diagnosed with a 'pocket' (which went untreated) and being treated for cholesteatoma - granted the symptoms were a bit rough by then. So, as always, the sooner your daughter has treatment the better. You have to have to go along with the medical expertise and surgery is inevitable but there's no way it means that disaster is imminent especially if a lot of other symptoms aren't obvious. God bless Phil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 Thank you Phil -- this was a really concise response and it really helped me understand this a bit better. I must say it also helped me calm down a bit! Hopefully we have some time, although, I'm not sure we haven't been in this for a long time. has had ear infections and ear problems all of her life. Hearing problems (at times very severe) since she was small. Severe headaches on and off for years, dizzy spells ... sinus problems. So I guess we will just unravel this a layer at a time and figure out what is at the bottom of it and pray! Thanks for the info. God Bless you back. Dianne psmorris <psmorris@...> wrote: Hello Dianne You may have already heard this stuff and I'm sure some of my science is challengeable but this is the story as straight as I know it. I'm told that a retraction pocket isn't necessarily a cholesteatoma but it is the start of it and who really knows if the doctor isn't using the term euphemistically. It usually means that there is a poor or none functioning Eustachian Tube (the thing that equalizes pressure in the middle ear to that of the outside world). When this tube malfunctions, negative pressure builds up in the ear and the eardrum is sucked inwards often attaching itself to the roof of the middle ear, the base, or both and sometimes enveloping the delicate hearing bones. Even in this position the eardrum is self renewing and continues to shed dead skin which can't escape hence the term 'pocket'. It's the dead skin that forms the cholesteatoma which as it grows moves into other parts of the ear, destroying bone and tissue and acting as a vehicle for infection. The one reassuring thing about a cholesteatoma is that its not particularly fast. You'll know it's bad when the grosser symptoms start to arise like nasty ear discharge, pain, facial paralysis and loss of balance. Personally I lasted 17 years from being diagnosed with a 'pocket' (which went untreated) and being treated for cholesteatoma - granted the symptoms were a bit rough by then. So, as always, the sooner your daughter has treatment the better. You have to have to go along with the medical expertise and surgery is inevitable but there's no way it means that disaster is imminent especially if a lot of other symptoms aren't obvious. God bless Phil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2002 Report Share Posted May 24, 2002 Hi Diane, I have to agree with you. Phil had an excellent response. Thanks Phil. Michele --- Dianne McAllister <diannemcal@...> wrote: > > Thank you Phil -- this was a really concise > response and it really helped me understand this a > bit better. I must say it also helped me calm down > a bit! Hopefully we have some time, although, I'm > not sure we haven't been in this for a long time. > has had ear infections and ear problems all of > her life. Hearing problems (at times very severe) > since she was small. Severe headaches on and off > for years, dizzy spells ... sinus problems. So I > guess we will just unravel this a layer at a time > and figure out what is at the bottom of it and pray! > Thanks for the info. > God Bless you back. > Dianne > psmorris <psmorris@...> wrote: Hello > Dianne You may have already heard this stuff and I'm > sure some of my science is challengeable but this is > the story as straight as I know it. I'm told that a > retraction pocket isn't necessarily a cholesteatoma > but it is the start of it and who really knows if > the doctor isn't using the term euphemistically. It > usually means that there is a poor or none > functioning Eustachian Tube (the thing that > equalizes pressure in the middle ear to that of the > outside world). When this tube malfunctions, > negative pressure builds up in the ear and the > eardrum is sucked inwards often attaching itself to > the roof of the middle ear, the base, or both and > sometimes enveloping the delicate hearing bones. > Even in this position the eardrum is self renewing > and continues to shed dead skin which can't escape > hence the term 'pocket'. It's the dead skin that > forms the cholesteatoma which as it grows moves into > other parts of the ear, destroying bone and tissue > and acting as a vehicle for infection. The one > reassuring thing about a cholesteatoma is that its > not particularly fast. You'll know it's bad when the > grosser symptoms start to arise like nasty ear > discharge, pain, facial paralysis and loss of > balance. Personally I lasted 17 years from being > diagnosed with a 'pocket' (which went untreated) and > being treated for cholesteatoma - granted the > symptoms were a bit rough by then. So, as always, > the sooner your daughter has treatment the better. > You have to have to go along with the medical > expertise and surgery is inevitable but there's no > way it means that disaster is imminent especially if > a lot of other symptoms aren't obvious. God > blessPhil > > Quote Link to comment Share on other sites More sharing options...
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