Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Jay: I think all Otologists want to take it one surgery at a time. Yours will be able to tell you after this surgery. Hopefully, only one. Just diagnosed... Told that I will have to have surgery. I'm going tomorrow night for a CT scan to get a better look at what's going on in there. I know I can't get a truly exact number on this, but, on average, how many surgeries are needed to correct this sort of thing. I was told that I would need surgery, not surgeries.Thanks...Jay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Jay, Prepare for having at least 2 surgeries - one for the removal and one for an exploratory follow up anywhere from 6-12 months after the first one. The number of surgeries will also depend on the size and location of the c-toma. Also, you should plan on going to the ear doc for the rest of your life to receive the proper care. Good luck! > Told that I will have to have surgery. I'm going tomorrow night for > a CT scan to get a better look at what's going on in there. > > I know I can't get a truly exact number on this, but, on average, how > many surgeries are needed to correct this sort of thing. I was told > that I would need surgery, not surgeries. > > Thanks... > Jay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Hi , Ugh. I was hoping you wouldn't say that. :-( This stuff has me freaked out. Weird thing is; one day my hearing in my right ear went to nil. It was not a gradual thing at all. I was starting to notice this nasty odor from my ear. So, I go to my ENT. He gets his noisy little ear vacuum and cleans out my ear. Apparently, I have a " super- infected chlosteatoma. " Now, I wonder if the infection was a blessing in disguise, since there was barely any hearing loss before it, and it ended up scaring me into going to the doctor. (My doc's got me on Ceftin pills and Cipro drops to keep the infection down.) I guess what I'm saying is, I just hope that we caught it early enough, that it didn't really cause too much damage in there.... sorry for running on and on. I appreciate your comments, Jay > > Told that I will have to have surgery. I'm going tomorrow night > for > > a CT scan to get a better look at what's going on in there. > > > > I know I can't get a truly exact number on this, but, on average, > how > > many surgeries are needed to correct this sort of thing. I was > told > > that I would need surgery, not surgeries. > > > > Thanks... > > Jay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 Steve Fear not, your normal run of the mill Family Doc's do not see this enough to know what they found. The only thing they can do is to try to treat it for a amount of time then send you to a ENT. Don't know where you live but I would seak out a Otologist, they are ENT's that only work on ears. In general Otologist's are trained the best to treat c-toma, don't get me wrong ENT's can do this but an Otologist knows this stuff inside and out. Odds are you will lose some hearing, it all depends on what the damage has been caused by the c-toma and what damage the surgery will cause. Let us know where you live, someone will likely chim in and point you in the direction of a Otologist. Tom Hansen --- <str8boyscantcompare@...> wrote: > My ENT told me a little bit about this and > recommended surgery right > away. I can hardly hear out of either ear but after > CT tests and a > painful prodding n chipping of something in my ear > with a slender > metal instrument, I am left today with the > following fears: > > On March 26, he is putting a tube in my left ear and > correcting a > deviated septum. Once healed, we are to schedule > the surgery for the > cholesteatoma. I can't even pronounce this word. > I'm looking at > pictures and just as nauseated as today in his > office with the > instrument. I nearly threw up in his chair. Ok, so > I'm overreacting > but my hearing is so horrible at this point its > unbearable! At least > out of 3 practitioners and 2 ENT's, he's the only > one who has been > able to determine what it is I have. He also said I > may need surgery > in my left ear in the future but not at this point. > He wants to just > put a tube in that ear. > > I'm sure there's a thousand and one posts about how > to calm my fears > but I'm really quite sick searching without meaning > or direction on > this " disease " . Please, someone explain to me the > effects on my > hearing...the pain involved and what degree...and > perhaps the > recovery time if possible. Any other pertinent info > will definitely > qualm my fears - hopefully. > > Thanks fellas! > > ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 Please, someone explain to me the effects on my hearing...the pain involved and what degree...and perhaps the recovery time if possible. Any other pertinent info will definitely qualm my fears - hopefully.Hi The purpose of the surgery is to eradicate the disease and make the ear safe and dry because you would end up far worse problems if it were left untreated. Your hearing, I'm afraid, is really a secondary concern. The three small sound conduction bones in the middle ear are usually the first things to be affected by cholesteatoma which is why you end up with hearing loss. If these bones are damaged or eroded then you will usually be given a reconstruction surgery at some later stage. Sometimes they do at the same time as the main surgery but usually it will after a period six months to a year to make the ear has fully healed and that the disease has not returned. Reconstruction generally involves placing a prosthetic inside the ear which will replace the bones and fixing the eardrum if necessary. In most cases the reconstruction will give you back a good level of hearing. There are different grades of ctoma surgery depending upon how far the disease has spread and how much damage has been done. The two main types being known as canal wall up and canal wall down. The fiirst one is more conservative but there is a greater chance that the disease may return in the future. The second is a more radical surgery which is better at getting rid of the disease completely but there are longterm consequences such as the ear needs to be cleaned out every so often by a surgenn and you would need to greater care to avoid getting water in your ear. Most surgeries these days are canal wall up and it may be worth asking your doctor which one he plans though he may not know for sure what is required until he as actually looked directly inside your ear. If you haven't got any major symptoms apart from hearing loss and probably ear pain then your surgery should not be to difficult. The surgery itself may last several hours - this is because a fairly painstaking procedure on a small scale. Most people will need about two weeks to rest folllowing surgery. You will normally have a sore head, of course, for which you will likely be given pain killers. There is usually some discharge and bleeding for a few days after the srugery and you may also experience some of dizziness. You are generally required to avoid heavy exertion or travelling by plane for about month or so after the surgery. Ctoma is potentially a very serious disease and it's absolutely normal to be anxious about surgery. It is curable however and the best part is always the relief you feel when you wake up and it's all over. The time running up to surgery is aleays the maot awful part . Phil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 Hi , Phil gives a very good and thorough account. I'll just add to this with some of my own personal experiences. I am currently 4 weeks post-op after my second Cholesteatoma operation (my first, 6 years ago was on my other ear). I can currently hear to an acceptable level through both ears without the use of a hearing aid. In my left ear, I have a prosthesis that was put in place during the first surgery, but the surgery in my right ear was done soon enough that I did not need to have a prosthesis placed in there. Pain was negligable, but for sure the first few days and weeks after the surgery you need to take it easy. Most important consideration is the quality of your surgeon. Good luck! > > Please, someone explain to me the effects on my > hearing...the pain involved and what degree...and perhaps the > recovery time if possible. Any other pertinent info will definitely > qualm my fears - hopefully. > > Hi > > The purpose of the surgery is to eradicate the disease and make the ear safe and dry because you would end up far worse problems if it were left untreated. Your hearing, I'm afraid, is really a secondary concern. The three small sound conduction bones in the middle ear are usually the first things to be affected by cholesteatoma which is why you end up with hearing loss. If these bones are damaged or eroded then you will usually be given a reconstruction surgery at some later stage. Sometimes they do at the same time as the main surgery but usually it will after a period six months to a year to make the ear has fully healed and that the disease has not returned. Reconstruction generally involves placing a prosthetic inside the ear which will replace the bones and fixing the eardrum if necessary. In most cases the reconstruction will give you back a good level of hearing. > > There are different grades of ctoma surgery depending upon how far the disease has spread and how much damage has been done. The two main types being known as canal wall up and canal wall down. The fiirst one is more conservative but there is a greater chance that the disease may return in the future. The second is a more radical surgery which is better at getting rid of the disease completely but there are longterm consequences such as the ear needs to be cleaned out every so often by a surgenn and you would need to greater care to avoid getting water in your ear. Most surgeries these days are canal wall up and it may be worth asking your doctor which one he plans though he may not know for sure what is required until he as actually looked directly inside your ear. If you haven't got any major symptoms apart from hearing loss and probably ear pain then your surgery should not be to difficult. The surgery itself may last several hours - this is because a fairly painstaking procedure on a small scale. > > Most people will need about two weeks to rest folllowing surgery. You will normally have a sore head, of course, for which you will likely be given pain killers. There is usually some discharge and bleeding for a few days after the srugery and you may also experience some of dizziness. You are generally required to avoid heavy exertion or travelling by plane for about month or so after the surgery. > > Ctoma is potentially a very serious disease and it's absolutely normal to be anxious about surgery. It is curable however and the best part is always the relief you feel when you wake up and it's all over. The time running up to surgery is aleays the maot awful part . > > Phil > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2008 Report Share Posted March 3, 2008 My ENT is an otologist and I'm glad. He's very confident and knew from the beginning what he found but waited to tell me after the CT tests were finished. He then did some procedure in the office that hurt quite a bit and pulled some of the c-toma out with an instrument just to be sure, I guess. > > > My ENT told me a little bit about this and > > recommended surgery right > > away. I can hardly hear out of either ear but after > > CT tests and a > > painful prodding n chipping of something in my ear > > with a slender > > metal instrument, I am left today with the > > following fears: > > > > On March 26, he is putting a tube in my left ear and > > correcting a > > deviated septum. Once healed, we are to schedule > > the surgery for the > > cholesteatoma. I can't even pronounce this word. > > I'm looking at > > pictures and just as nauseated as today in his > > office with the > > instrument. I nearly threw up in his chair. Ok, so > > I'm overreacting > > but my hearing is so horrible at this point its > > unbearable! At least > > out of 3 practitioners and 2 ENT's, he's the only > > one who has been > > able to determine what it is I have. He also said I > > may need surgery > > in my left ear in the future but not at this point. > > He wants to just > > put a tube in that ear. > > > > I'm sure there's a thousand and one posts about how > > to calm my fears > > but I'm really quite sick searching without meaning > > or direction on > > this " disease " . Please, someone explain to me the > > effects on my > > hearing...the pain involved and what degree...and > > perhaps the > > recovery time if possible. Any other pertinent info > > will definitely > > qualm my fears - hopefully. > > > > Thanks fellas! > > > > > > > > ______________________________________________________________________ ______________ > Never miss a thing. Make your home page. > http://www./r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2008 Report Share Posted March 3, 2008 Any way I can check the quality of my surgeon or find that out? He seems very competent - but so do used car salesman! > > > > Please, someone explain to me the effects on my > > hearing...the pain involved and what degree...and perhaps the > > recovery time if possible. Any other pertinent info will definitely > > qualm my fears - hopefully. > > > > Hi > > > > The purpose of the surgery is to eradicate the disease and make the > ear safe and dry because you would end up far worse problems if it > were left untreated. Your hearing, I'm afraid, is really a secondary > concern. The three small sound conduction bones in the middle ear are > usually the first things to be affected by cholesteatoma which is why > you end up with hearing loss. If these bones are damaged or eroded > then you will usually be given a reconstruction surgery at some later > stage. Sometimes they do at the same time as the main surgery but > usually it will after a period six months to a year to make the ear > has fully healed and that the disease has not returned. > Reconstruction generally involves placing a prosthetic inside the ear > which will replace the bones and fixing the eardrum if necessary. In > most cases the reconstruction will give you back a good level of > hearing. > > > > There are different grades of ctoma surgery depending upon how far > the disease has spread and how much damage has been done. The two > main types being known as canal wall up and canal wall down. The > fiirst one is more conservative but there is a greater chance that > the disease may return in the future. The second is a more radical > surgery which is better at getting rid of the disease completely but > there are longterm consequences such as the ear needs to be cleaned > out every so often by a surgenn and you would need to greater care to > avoid getting water in your ear. Most surgeries these days are canal > wall up and it may be worth asking your doctor which one he plans > though he may not know for sure what is required until he as actually > looked directly inside your ear. If you haven't got any major > symptoms apart from hearing loss and probably ear pain then your > surgery should not be to difficult. The surgery itself may last > several hours - this is because a fairly painstaking procedure on a > small scale. > > > > Most people will need about two weeks to rest folllowing surgery. > You will normally have a sore head, of course, for which you will > likely be given pain killers. There is usually some discharge and > bleeding for a few days after the srugery and you may also > experience some of dizziness. You are generally required to avoid > heavy exertion or travelling by plane for about month or so after the > surgery. > > > > Ctoma is potentially a very serious disease and it's absolutely > normal to be anxious about surgery. It is curable however and the > best part is always the relief you feel when you wake up and it's all > over. The time running up to surgery is aleays the maot awful part . > > > > Phil > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2008 Report Share Posted November 21, 2008 Hi!! and welcome!! This group is the greatest thing....it makes you feel support and lends advice from experience...plus it helps in the " lonely " feeling that most of us have as parents of this terrible illness that our little ones deal with constantly. I have a 3 yr old little girl that has been fevering monthly for 2 yrs. Her fevers usually start with leg pains waking her at night...clinginess...not wanting to eat...her temps start at 100.5 and go up quickly from there. I cannot control her temps without using both motrin and tylenol together....to bring the temp down to 101....she needs one in her system as the other wears off or her temp spikes...her temps usually hit between 104-105...especially on day 2.....by day four the fever is gone. She sports ulcers on the inside of her little cheeks too. I usually do motrin every 6 and tylenol every 4...(especially on day 2). I found that a cold wet washcloth (rinsing in bowl) when fever spikes while waiting on medicine to work... helps bring fever down a little quicker. LOTS of popsicles....sometimes pedialyte if she isn't drinking well. All she wants to do is cuddle and have me hold her....so most of the 4 day period is spent rocking. By day 4 she's all better....fever is gone....she eats like nuts and starts playing as usual. All I do is count my little notebook ahead 14 days and 28 days and enjoy the days inbetween. Our dr is prescribing prednisone for emergencies....and wants to put her on cimetidine or colchicine to see if the fevers spread out some. Again, welcome....research the knowledge on here....and realize that you are NOT alone. Tammy Quote Link to comment Share on other sites More sharing options...
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