Stories From People Who've Had an Experience With a Cholesteatoma   
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[ Story 1 - Jeff Pittman, 18 ]
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[ Story 21 - Dave, 39 ]
[ Story 22 - David, 53 ]
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[ Story 97 - Catalin F, 30 ]
[ Story 98 - Nell Canton ]

Dave Sedovic, 39

I've written my story on the Yahoo! Cholesteatoma group. If you want to ask questions and/or get support for Cholesteatoma, the best thing to do is to join this group! Wonderful, helpful people with LOTS of experience! http://health.groups.yahoo.com/group/cholesteatoma/. I've always had ear infections my whole life, and even had tubes in my ears three times when I was a kid. In 2002 I had a bad ear infection in my left ear, and was not able to get an appointment with my doctor for over a week. After the ear infection cleared up, my hearing never returned to normal. Eventually I went back to my doctor to have it checked. After several rounds of putting drops in to soften wax (my ears produce LOTS of wax) and flushing, there was still something in my ear canal that wasn't coming out. So he referred me to an ENT. The ENT also couldn't remove this thing in my ear. Eventually he sent me for a CT scan. After getting the results, he told me I had cholesteatoma. By then I had found the Yahoo! cholesteatoma group, and started asking questions there and writing about my experiences.Here are some of my messages from the group describing my "adventure" with cholesteatoma: Wed Nov 5, 2003 12:55 pmI had my appt with my ENT yesterday to go over my CT scan results(see excerpt below). Even though the scan showed possible C-Toma,my ENT referred to the surgery as elective. He said the two reasonsfor having it done were to reduce the amount of ear discharge and topossibly improve the hearing. Needless to say, I've asked for asecond opinion from an otologist, and have already put in my requestfor a referral. If it wasn't for this group, I would've justaccepted my ENT's comments!Here's an excerpt from my CT scan results:"Images of the left temporal bone demonstrated abnormal soft tissuein the attic exteding from the tympanic membrane superiorly. Thereis slight osseous erosion of the scutum with involvement of theossicular chain on the left. Some erosion of the ossicles issuspected as well. The findings are consistent with acholesteatoma. The stpes is not well seen. There is cerumen in theexternal auditory canal. The tympanic membrane is mildlythickened. The horizontal portion of the facial nerve is contiguouswith some of the abnormal attenuation in the middle ear cavity."So hopefully I'll get the referral I put in for and can talk to adoctor who is more of an expert on C-Toma.Dave Wed Nov 26, 2003 2:03 pm Well, after finally having to explain to my primary physician whatan otologist is and why I want to see one, I had my appt with theotologist yesterday. What a difference between the otologist andENT! The ENT casually said the surgery could be done whenever (noteven a strong suggestion that I had to do it). The otologist saidit needs to be done immediately and scheduled my surgery for the10th of December! He also went in to great detail (and drawings) toshow me where the ctoma is, and what the surgery will be like,including the risks (basically anything on his picture, includinginner ear, facial nerve, and brain). Everything was just like whateveryone describes on this group.Now the trick is getting it approved by the HMO before the surgery.He's not in my medical group, but since my medical group doesn'thave an otologist, I hope they will approve it. I was encouragedwhen they approved the consultation! Also, this otologist isresident at the hospital I go to for my HMO, so that should helptoo. But even if they don't approve it, I will still use him for mysurgery, even if I have to pay for it myself.The only thing that saddens me is that I probably won't be able tohear LOTR: Return of the King with both ears!DaveP.S. I have had tinnitus as long as I can remember. When I was akid I used to lie awake in bed while the ringing drove me nuts! Butnow I hardly ever notice it, even though it's become much louder inthe left ear (the one with ctoma). Fri Dec 5, 2003 3:08 pmUnfortunately my HMO denied my request to have an otologist performthe surgery. The reason they denied it is because my ENT claims hecan perform the surgery. I do not feel comfortable with this ENTdoing my surgery, so I am going to go ahead and have the surgerydone with the otologist. It has been re-scheduled for the 16th ofDecember.Dave Wed Dec 10, 2003 1:05 pm I thought I'd give an update on my situation. I had plans to appealthe HMO's decision, but first I was scheduled to have suction onwhat appeared to be a part of the cyst that had come through the eardrum and was attached in my outer ear. I had been putting somespecial drops in for about 2 weeks to soften it up. The doc thatwas going to do the suction was the otologist I wanted to see, Dr.Wiet.Even though I didn't have a referal for this, I went in anyway.However, Dr. Wiet had been called to do an emergency surgery andwasn't available. I spoke with the ladies in the business officeabout my insurance problems, and we came up with a very goodpotential solution. It appears that another otologist in the groupis affiliated with my HMO, but not the medical group I am in. Andit turns out that the medical group he is affiliated with is thesame one as the family doctor of some very good friends of ours. Sothe idea is for me to change medical groups, and then go see my newPCP and have them give me a referal to Dr. Battista (the otherotologist). Since Dr. Battista is in their network, this shouldwork fine. I also said that I would be paying for the suctionprocedure out of my own pocket since I didn't have a referal.Then they suggested that Dr. Battista perform the suction so hecould become familiar with me. So I met with Dr. Battista, and heseems like an excellent doctor (I've also heard lots of good thingsabout hime). He did the suction and explained the whole surgeryprocedure. He also told me that the medical group I was withcurrently had problems with paying their specialists, which is whyhe was no longer affiliated with that group! Hmmm, maybe that's thereal reason they didn't approve my original request! He alsoexplained that this kind of surgery is what he and Dr. Wiet do on adaily basis, and that they even teach others how to perform thesurgery (they're affiliated with Northwestern University).As I was leaving, I was in for another pleasant surprise. I waswaiting at the receptionist desk with checkbook in hand to pay, andthe receptionist asked if I needed to schedule another appointment.I said no, but that I needed to pay. She then said that the doctorhad marked my visit as no charge!Anyway, now I feel more confident that I'll be able to have Dr.Battista perform the surgery. I'll just have to wait until Januaryto find out when (because my new medical group won't be effectiveuntil then).At least I'll be able to go see LOTR - ROTK before I have my surgerydone! :-)Thanks,Dave Thu Feb 26, 2004 11:10 am I just wanted to let everyone know that I'm finally going in for mysurgery tomorrow (the 27th). The Chicago Otology group has beenexcellent in helping me navigate through the HMO mess, so now I haveeverything approved by my insurance. Thanks to everyone on thisgroup for giving me the knowledge I needed to find the right doctorfor this problem! I'll let you know how everything comes out nextweek (or whenever I'm able to).Dave Sedovic Tue Mar 2, 2004 4:28 pm Hi everyone!Well, I had a successful surgery last Friday. The C-Toma was muchlarger and more extensive than the doc had hoped for. As Iunderstand it from the conversation my wife had with the surgeonafterwards, and the phone call I had with him on Sunday (he calledme at home to check up on how I was doing!), not only had the c-tomaeroded the hearing bones, but it had also wrapped around my tastenerve and was headed through the bone to the brain. The taste nervehad to be cut, and I'm now learning how to eat on one side of mymouth (not too hard since it hurts right now to chew on the otherside!). My wife was reluctant to tell me about the taste nerve,until I had her try a cracker I was eating because I thought ittasted like glue.Now I have a protheses (sp?) for my hearing bones, and a patch on ornear the dura. The doc said I have to take it very easy for twoweeks, no lifting or anything that might cause the protheses or thepatch to dislodge. I even have to be careful about how I sneeze(and of course my wife has taken it to the extreme saying I can'tsneeze for two weeks!).I still have a lot of pain, and the Vicodin helps somewhat. I'msleeping better and watching a lot of TV. I have packing that willdissolve mostly on it's own, and anything that's left he will removewhen I see him again on April 5th. He said it would also take acouple of months for the packing behind the new ear drum (yeah, gotone of those, too) to dissolve and then we'll be able to find outhow well the new protheses will work.I think the hardest thing about it all is watching my wife having todo everything around the house because I can't risk undoing any ofthe doctor's work.Thanks again everyone for the support and education I have gottenhere. It really scares me to think what would have happened if Ihad followed the wishes of my HMO and let my regular ENT performthis surgery. It's really hard for me to accept the risk that theywere willing to put up with on my behalf just to try and savethemselves a few bucks.Dave Sedovic Wed Mar 3, 2004 9:27 am I just had my surgery last Friday, so I can tell you how it went forme...They took me to a day surgery patient room where I changed into thehospital gown. The nurse gave me a couple of pills she said werefor nausea, and she inserted the IV. This was the only pain Iremember feeling until after the surgery!A few minutes later they wheeled me down to a prep area where I metthe anesthesiologist. He put a sedative in my IV, calling it myhappy juice. I did start feeling much calmer and happier! My wifewas with me the whole time up to this point.Everything after this became a blur, but I do remember them wheelingme into the OR. I had to scoot over to a much narrower bed, andthey introduced everyone to me (not like I could tell them apartsince they were all wearing masks... :-). I remember asking whichof the machines was the laser. I don't remember what time I fellasleep. The next thing I remember is waking up back in my daysurgery room. I know I was supposed to wake up in a recovery area,but I don't recall any of that.Very shortly after I woke up I was putting back on my clothes andready to leave! The nurse gave my wife some gauze and stuff andwheeled me out in the wheelchair, and we were off!I did have to ask my wife to take a different route driving homebecause the one she normally takes has lots of curves, and it wasmaking me dizzy and nauseous.Even after the surgery I didn't really feel much pain until a day orso later when the anesthesia was finally wearing off completely.The hospital called in a prescription to my pharmacy for Vicodin soit was all ready for my wife to pick up.I wasn't very nervous before the surgery until maybe the daybefore. I think I was more anxious than nervous.Dave Thu Apr 8, 2004 5:03 pm I had the gel packing. I had chunks coming out for several weeks,and then was told to use Cipro drops twice a day for 1 week before myfirst post-op (which was done at 5 1/2 weeks). The only thing thedoc had to suction out was some buildup from the drops. My hearingis doing very well (I had removal and reconstruction done at the sametime) and will have a hearing test at my next appt at the end of themonth. Since this is my first operation, I can't compare the gelpacking to the regular packing, but I did like the gel! In fact, atabout 4 weeks my ear opened up and I was hearing very well until Icaught a cold two days later and everything closed up (probably dueto congestion).Dave Fri May 21, 2004 9:47 amI had a radical modified mastoidectomy (CWU version), tympanoplastyand ossicular chain reconstruction done at the end of Februrary. Mytaste nerve was cut so I don't have taste on the left side of mymouth, although I think it's slowly coming back. But at the end ofApril when I had my 2nd post-op follow-up with my otologist, anaudiogram showed my hearing to be back in the normal range (lownormal, but still normal!) and it was actually better than it hadbeen before the surgery. The doc had said before the surgery hethought the hearing in that ear would probably be about the sameafterwards, so I was surprised and pleased at the results! The onlydifference I've noticed is that loud noises sound much harsher thanthey did before, kind of like turning the stereo volume up too loudwhen you have cheap speakers. The doc said I can even get water inmy ear now if I want to, although I'm still using swim plugs whentaking showers.Dave Sat Sep 4, 2004 10:21 amAfter my reconstruction, my hearing returned to the normal range andfor the most part sounds do seem like they used to. I can hear musicin stereo again! But, loud sounds sound really harsh and veryannoying, including sounds like loud laughter or screams. Itactually kind of hurts! I compare the experience to that of usingcheap speakers on a stereo. At normal levels the sound is okay, butif you turn it up real loud it becomes distorted. I don't know ifanyone else has experienced this, I haven't seen any comments like iton this group.I do notice sometimes that my hearing seems to open up, but I thinkit's more because of the normal flow of wax in my ear. I still havethe tendency to hold the phone up to my normal ear, even though I cannow hear it okay with my reconstructed ear. I guess I just got inthe habit and it's hard to break.Dave Fri Feb 18, 2005 10:17 am I'm having my second look done on March 1st. The way my surgeondescribed it is that he'll go in and lift up the ear drum and lookaround with some tools that are kind of like miniature periscopes.So hopefully he won't find any ctoma and there won't be any cutting!I had my reconstruction done at removal (CWU) and so far everythingis working great!Dave My second look surgery was successful, since no cholesteatoma was found. However, I am still having a problem with a hole in my eardrum. During the second surgery, my doctor put a tube in because there was fluid behind the ear drum. But after the fluid drained and the tube fell out like it was supposed to, the hole still remains. Currently we are monitoring it to see if it heals by itself. If not, my doc will try to patch it somehow. So that's my story, and I'm sticking to it! I used my messages from the group because it shows exactly what I was going through at the time. I hope it also shows how useful the group is for information and support! Thanks, Surfin Dave