Guest guest Posted November 20, 2002 Report Share Posted November 20, 2002 On Thu, 24 Oct 2002 20:09:05 -0000 " Michele " <iambored97601@...> wrote: > My husbands doc said it wasn't hereditary; however, he said our son > would stand a higher chance (although still extremely low) of > contracting c-toma than a child of a family who has never had to > deal with this monster. I had a similar response from my consultant. He said my the increased risk to my son was equivalent to adding 1% on top of the risk for the general population. -- Pete pete@... ------------------------------------------------------------- MaVerick - Open Source MultiValue Database Management System Check out the website -> http://www.maverick-dbms.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2009 Report Share Posted December 5, 2009 One possible thing that might help would be the use of hearing aids if he isn't already doing that. Some folks could really use them, but choose not to because of not wanting to be visibly challenged. Without my hearing aids I wouldn't hear much of anything and would really feel left out of conversation, etc. They are kind of expensive and they're typically not covered by insurance. I've been getting mine using zero interest loans that my employer uses with payroll deduction for medical expenses. Another thing would be ... how much exercise is he getting? I've been doing a lot better since I've been exercising as regularly as possible. I kind of got the exercise bug because of diabetes, so my meals are regularly only so much and and I try to always fit in a half hour walk each day. There's a lot to be said for endorphins - but I can understand the alternative route. Funny, I don't sleep all that much either and I really should. I'm often more tired than I should be at 49. Best wishes, Matt savemoredo wrote: > > Please give me advice. My husband has had cholesteatoma removed from > both ears and recently had a third surgery on his right ear. This is > what has been happening since Sept. > visit to er because of vertigo-he broke out in a sweat and couldn't > stand up. Constant pain around his ear and headaches. Nightmares and > depression. He has a terrible time hearing and my kids are really > tired of hearing the tv blaring. (Although we love him and do tolerate > this) The ent has told him that it takes time to heal. We visit the > nurse practioner next week because of the headaches and the dr. at the > end of the month for a post op. Last month, I finally told him he > needed to see our family dr. for depression. (my kids are noticing it > too) The dr. put him on a antidepressant. Since he started taking it, > I have noticed a small change. he is quieter and I think he is > sleeping more; however, he tells me he doesn't feel a difference. He > is still having nightmares and headaches though. He still has dizzy > spells and tells me they happen sometimes when he is driving. We > really depend on his income so he must work. > > Has anyone experienced any of these symptoms? I want to insist that > the dr. do more but only if it is necessary. Please tell me what you > think. > My husband is 44. > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 I found the three doctors listed below using the " Find an ENT by " searching tool on the web site for the American Academy of Otolaryngology - Head and Neck Surgery at http://www.entnet.org/. Once I found their names, I looked them up with either their phone numbers or their names (or a combination of the two). You could consider these three (one of which may be the person you've already seen): http://www.ucdmc.ucdavis.edu/otolaryngology/ourteam/faculty/diaz.html http://www.ucdmc.ucdavis.edu/otolaryngology/ourteam/faculty/doyle.html http://www.sacent.com/index.cfm/fuseaction/site.physicians/action/dtl/phys/99838\ 484.cfm I hope that this helps. If you're close to the House Ear Clinic, that place is very well known. Matt strwbryblonde74 wrote: > > Hello: > > I'm new to this discussion group. I've had ear problems the majority > of my life and being seeing a ENT since for about 20 years. A few > years ago I was diagnoised with cholesteatoma that was confirmed by > two ENT's. The ENT order CAT scan and the ENT's confirmed > cholesteatoma. The ENT put in a ear tub ( nothing new) and order > anitbotics, and the ear infection left. My ears have been clean for > several years now, but nothing said about the cholesteatoma. The ENT's > have now left the practice and another ENT is now there. This ENT > looked at my ear and said that I don't have a cholesteatoma, but has > not requested the CAT x rays. So, now I'm soo lost as to what to do. > This ENT doesn't believe me that I have this thing in my ear, and says > that he doesn't see anything. What do I do? I'm worried about this > thing that can be growing in my ear, but I hate surgeries. > > Do I get the x rays and shove it in his face? Do I believe him and do > on my way with life? I still feel like there is allot of pressure in > my ear, but the ear is clean and has been clean for years. Any > recommendations for ENT or other DR around Sac CA ? > Thanks. > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 Hello: How do I know what to believe? The one ENT said that I had it and order CT. The second one in the same office confirmed by looking at the X rays. He only put in a ear tub and antibotics. My ear has been clean and hearing same for over these years. Now this new guy says I'm fine and do not need CTs. He says that he can see in the pocket and it is clean. I'm wondering if this is scar tissue or fluid or a past infection that is showing up on the old CT? Is it possible? The past ENT didn't seem to be concered over these years. They said it was fine and that they can see it...no x rays needed becuase it exposes to the chemicals. Who I believe? I would like to believe that there is nothing wrong, because I hate surgeries. Who do I trust? How do I know these Dr is good enough to operate on me? What is the difference between a ENT and a otogologist / nerogologist? I thought all you could get was a ENT. How did you guys determine what to do? How do you know that the dr is wrong or right? I mean I feel alright expect for the sometimes pressue in my ear... no infections...hearing is alright....etc.. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 Hello: Does anyone else have any thoughts about Dr in California? I've heard of the Ear Institue in Palo Alto. Does anyone else have any recommendations? From: Kat <vegankat83@...>cholesteatoma Sent: Sat, January 23, 2010 8:09:50 AMSubject: Re: Cholesteatoma Hey!I got multiple medical opinions before I got the surgery (but I was in a lot of pin as well and had other disturbing symptoms, so my diagnosis was pretty clear).Getting more opinions will be good. In case you don't know, I was told that most cholesteatoma growths grow pretty slowly. So don't freak out and think you need to know right away. The sooner, the better, but waiting a couple months to know for sure will be ok as well.I hope you find out! And find a good ENT in Cali.Peace,Kat>> Hello:> > I'm new to this discussion group. I've had ear problems the majority of my life and being seeing a ENT since for about 20 years. A few years ago I was diagnoised with cholesteatoma that was confirmed by two ENT's. The ENT order CAT scan and the ENT's confirmed cholesteatoma. The ENT put in a ear tub ( nothing new) and order anitbotics, and the ear infection left. My ears have been clean for several years now, but nothing said about the cholesteatoma. The ENT's have now left the practice and another ENT is now there. This ENT looked at my ear and said that I don't have a cholesteatoma, but has not requested the CAT x rays. So, now I'm soo lost as to what to do. This ENT doesn't believe me that I have this thing in my ear, and says that he doesn't see anything. What do I do? I'm worried about this thing that can be growing in my ear, but I hate surgeries.> > Do I get the x rays and shove it in his face? Do I believe him and do on my way with life? I still feel like there is allot of pressure in my ear, but the ear is clean and has been clean for years. Any recommendations for ENT or other DR around Sac CA ?> Thanks.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 I thought a ENT was a otologist. What is the difference between otology and ENT? How do you know if your dr is a ent or otology? I have blue shield insurance and they cover ent specialist. From: Captain Definder <captaindefinder@...>cholesteatoma Sent: Sat, January 23, 2010 7:57:23 AMSubject: Re: Cholesteatoma I would consider seeing someone who specializes in otology/neurotology not a general ENT. Cholesteatomas do not disappear- surgery is necessary. Good luck finding a doctor - there are many good ones out there. From: strwbryblonde74 <strwbryblonde74>cholesteatoma@ groups. .comSent: Fri, January 22, 2010 6:18:46 PMSubject: Cholesteatoma Hello:I'm new to this discussion group. I've had ear problems the majority of my life and being seeing a ENT since for about 20 years. A few years ago I was diagnoised with cholesteatoma that was confirmed by two ENT's. The ENT order CAT scan and the ENT's confirmed cholesteatoma. The ENT put in a ear tub ( nothing new) and order anitbotics, and the ear infection left. My ears have been clean for several years now, but nothing said about the cholesteatoma. The ENT's have now left the practice and another ENT is now there. This ENT looked at my ear and said that I don't have a cholesteatoma, but has not requested the CAT x rays. So, now I'm soo lost as to what to do. This ENT doesn't believe me that I have this thing in my ear, and says that he doesn't see anything. What do I do? I'm worried about this thing that can be growing in my ear, but I hate surgeries.Do I get the x rays and shove it in his face? Do I believe him and do on my way with life? I still feel like there is allot of pressure in my ear, but the ear is clean and has been clean for years. Any recommendations for ENT or other DR around Sac CA ?Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 I recommend seeing someone else and requesting a CT scan...my surgeon told me that the CT does not always pick up "how extensive" the cholesteatoma is but can confirm it is there. I had pressure in my ear...but did not have any infections...actually my ear stayed pretty clean over the years...I did have hearing loss. My surgeon told me that my ear was cleaner (without a lot of debris) then most ears she has seen, but the cholesteatoma was more extensive then she thought (if that makes sense). I did not ever have any of the foul smelling drainage. Just get another opinion it will make you feel better. From: Cheyenne Copper <strwbryblonde74@...>Subject: Re:Cholesteatomacholesteatoma Date: Saturday, January 23, 2010, 8:37 PM Hello:How do I know what to believe? The one ENT said that I had it and order CT. The second one in the same office confirmed by looking at the X rays. He only put in a ear tub and antibotics. My ear has been clean and hearing same for over these years. Now this new guy says I'm fine and do not need CTs. He says that he can see in the pocket and it is clean. I'm wondering if this is scar tissue or fluid or a past infection that is showing up on the old CT? Is it possible? The past ENT didn't seem to be concered over these years. They said it was fine and that they can see it...no x rays needed becuase it exposes to the chemicals.Who I believe? I would like to believe that there is nothing wrong, because I hate surgeries. Who do I trust? How do I know these Dr is good enough to operate on me? What is the difference between a ENT and a otogologist / nerogologist? I thought all you could get was a ENT. How did you guys determine what to do? How do you know that the dr is wrong or right? I mean I feel alright expect for the sometimes pressue in my ear... no infections.. .hearing is alright....etc. .Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 An ENT (also called an otorhinolaryngologist or just called otolaryngologist) is an ear, nose and throat specialist. Many ENTs simply specialize a little further: ears - otologists noses - rhinologists throats - laryngologists There is a further specialization that most of people with cholesteatoma really like to see. That is the neurotologist. A neurotologist has had advanced training in care of the nerve pathways in the ear. So, the three names that I found out of that database in the Sacramento area were all neurotologists. I was referred by my family doctor (who was completely mystified about what was wrong) to an ENT friend of hers. Even though that ENT specialized in rhinology, it only took her a couple of minutes to reach the conclusion that I likely had a cholesteatoma. She called in the neurotologist in her group. He took about a five second look and simply said " Yup! " As a backup, he did have me get a CT scan. The scan only confirmed the diagnosis - he was a little surprised by how massive it was once he got in there. Make sure you get to a really good neurotologist. If you're close to the House Ear Clinic, why not go there if your insurance will cover it and it's not too difficult to get there? Rather than worry about it any more, get them to check things out. It could be that your first doctor was wrong - none of us will know the definitive answer to that. All the best, Matt Cheyenne Copper wrote: > > I thought a ENT was a otologist. What is the difference between > otology and ENT? How do you know if your dr is a ent or otology? I > have blue shield insurance and they cover ent specialist. > > ------------------------------------------------------------------------ > *From:* Captain Definder <captaindefinder@...> > *To:* cholesteatoma > *Sent:* Sat, January 23, 2010 7:57:23 AM > *Subject:* Re: Cholesteatoma > > > > I would consider seeing someone who specializes in otology/neurotology > not a general ENT. Cholesteatomas do not disappear- surgery is > necessary. Good luck finding a doctor - there are many good ones out > there. > > ------------------------------------------------------------------------ > *From:* strwbryblonde74 <strwbryblonde74 <http:///>> > *To:* cholesteatoma@ groups. .com > *Sent:* Fri, January 22, 2010 6:18:46 PM > *Subject:* Cholesteatoma > > > > Hello: > > I'm new to this discussion group. I've had ear problems the majority > of my life and being seeing a ENT since for about 20 years. A few > years ago I was diagnoised with cholesteatoma that was confirmed by > two ENT's. The ENT order CAT scan and the ENT's confirmed > cholesteatoma. The ENT put in a ear tub ( nothing new) and order > anitbotics, and the ear infection left. My ears have been clean for > several years now, but nothing said about the cholesteatoma. The ENT's > have now left the practice and another ENT is now there. This ENT > looked at my ear and said that I don't have a cholesteatoma, but has > not requested the CAT x rays. So, now I'm soo lost as to what to do. > This ENT doesn't believe me that I have this thing in my ear, and says > that he doesn't see anything. What do I do? I'm worried about this > thing that can be growing in my ear, but I hate surgeries. > > Do I get the x rays and shove it in his face? Do I believe him and do > on my way with life? I still feel like there is allot of pressure in > my ear, but the ear is clean and has been clean for years. Any > recommendations for ENT or other DR around Sac CA ? > Thanks. > > > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Hi, welcome to the group. I for one know that a lot of doctors even ent's can miss c-toma. It is very easy to miss. I tried to get into the Marines back in 92 and the military doctor there said it looked like I had c-toma and told me to get it removed then I should be able to get in. I went to doctor after doctor specialist after specialist and not one of them confirmed I had c-toma. Then in January of 05 my bad ear the c-toma ear started bleeding and the ent took a closer look and said I had c-toma. I hope my case is a rareity in it going so long to find out. I am pretty sure it is a rareity. I would go to another ent or have the cat scan done, not to shove it in his face but to show him that he was wrong and next time to please listen to the patient and take a closer look. I hope you don't have c-toma and that your ears keep staying good like they have been. Now for me though my ears hurt most days and I get dizzy not sure if it is because the c-toma caused some damage to my ear or not, I guess anything is possible though. I don't think most people have their ears bleed before it is found out they have it. If you do have c-toma then surgery is the only answer to get rid of it. Sorry for that last bit of bad news. Good luck and I hope everything turns out well for you. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2010 Report Share Posted February 8, 2010 An ENT is ear,nose, throat doc. Otologists are just ear guys, they'd know the intricacies of the ear and ear disease even more than the ENT. (neurotologists treat diseases and " disorders of the ear, temporal bone, facial nerve, and associated structures " ) Some ENTs have little experience with ctoma. I've talked to a fellow ctoma patient who had an ENT try to pull her ctoma out in the office! not good. Ask whichever doctor you're speaking to if he/she has seen a lot of ctoma cases - if he hasn't, ask for a doctor with a lot of ctoma experience, or get a referral to one. It's your hearing they're messing with, so you have the right to get to a doctor who can correctly diagnose. Even if it's just to tell you that it's not ctoma, you want a guy who knows what it really looks like. If the CT showed ctoma, the next step is surgery. so the doc who gave you ear tubes and antibiotics obviously has no ctoma experience. If you have no confidence in your current office, find a different one and bring them your CTs and demand a doctor with ctoma experience. Good luck > > Hello: > > How do I know what to believe? The one ENT said that I had it and order CT. The second one in the same office confirmed by looking at the X rays. He only put in a ear tub and antibotics. My ear has been clean and hearing same for over these years. Now this new guy says I'm fine and do not need CTs. He says that he can see in the pocket and it is clean. I'm wondering if this is scar tissue or fluid or a past infection that is showing up on the old CT? Is it possible? The past ENT didn't seem to be concered over these years. They said it was fine and that they can see it...no x rays needed becuase it exposes to the chemicals. > > Who I believe? I would like to believe that there is nothing wrong, because I hate surgeries. Who do I trust? How do I know these Dr is good enough to operate on me? What is the difference between a ENT and a otogologist / nerogologist? I thought all you could get was a ENT. How did you guys determine what to do? How do you know that the dr is wrong or right? I mean I feel alright expect for the sometimes pressue in my ear... no infections...hearing is alright....etc.. > > Thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2010 Report Share Posted February 9, 2010 I got my Primary Doctor to approve a 2nd opinon and I get to go to UCD ENT ear clinic. Anyhow below are the doctors: http://www.sacent.com/index.cfm/fuseaction/site.physicians/action/dtl/phys/99838\ 484.cfm http://www.ucdmc.ucdavis.edu/otolaryngology/ourteam/faculty/diaz.html http://www.ucdmc.ucdavis.edu/otolaryngology/ourteam/faculty/brodie.html http://www.ucdmc.ucdavis.edu/otolaryngology/ourteam/faculty/doyle.html http://www.ucdmc.ucdavis.edu/otolaryngology/ourteam/faculty/dobie.html I have to wait 10 weeks to see the Dr, and that was the soonest appointment by the 2nd opinon referral. After I see the UCD dr for the second visit, then the Primary doctor get to plan the next step(s). I'm not sure what happens in the long run with this 2nd opinon process. Will my primary let me stay with this doctor ? I have to wait 10 weeks to find out if I get to stay and get approved for more appointments. I hate to wait 10 weeks and not be able to continue seeing the doctors there. I believe that my current ENT is just not qualified to handle my ears if I have a cholesteatoma. They past 2 ENT that I've seen said I have a cholesteatoma but this current ENT that I'm now assigned says that I dont have it because I dont have any symptoms. I'm wondering with the whole HMO thing if it would be easier to just drop the current Primary doctor and then get another doctor in the UC Health system. Then the primary doctor in the UC health systhem they can then refer me to the in network ENT which are the UC Ear Clinic. Would this process be better than the 2nd opinon process? Is anyone familar with this? I'm trying to use my insurance, but wondering if the 2nd opinon thing will work out in the long run. I was wondering if anyone had any experience with ENT or otologist in the UCD health system? THANKS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2010 Report Share Posted February 9, 2010 Hello: My current Primary care doctor is allowing me to get a second opinon on my ears. I get one appointment at UCD Ear Clinic in Sacramento. I live around the sacramento area. After this appt the primary doctor determines what happens next. My past ENT ear doctors said I have a cholesteatoma. My current ENT doctor (the ohters left) says that I dont have one and will not allow for CT x rays. I have hmo insurance and have to have the primary doctor refer me to a doctor specialist. The UCD ear clinic is out my current network. Im wondering if it would be better to drop my current primary doctor for a UCD primary doctor. The UCD davis doctor will then refer me to a UCD ear clinic because it is in the network. I'm debating on whether to wait an see about the ucd ear clinic appt and the results. or to do the change of the ear ent doctor now on my own. It would require me changing all of my doctors. I dont know anything about the UCD ear clinic or anyones experience there. > > Hello All : > > I was wondering if anyone had any experience with ENT or otologist in the UCD health system or the Sacramento CA ENT offices? > I was thinking trying to go to the doctor in one of those offices. UCD health system is supposed to have otologist and the Sac ENT office is supposed to have one. I believe that the UCD system is a teaching hospital, however I'm not sure who does the surgeries. I'm also not sure how the ENT offices work, because I've never been to them at all. > Anyhow below are the doctors: > http://www.sacent.com/index.cfm/fuseaction/site.physicians/action/dtl/phys/99838\ 484.cfm > http://www.ucdmc.ucdavis.edu/otolaryngology/ourteam/faculty/diaz.html > http://www.ucdmc.ucdavis.edu/otolaryngology/ourteam/faculty/brodie.html > http://www.ucdmc.ucdavis.edu/otolaryngology/ourteam/faculty/doyle.html > http://www.ucdmc.ucdavis.edu/otolaryngology/ourteam/faculty/dobie.html > > > Also, what type of questions did you guys ask when seeing the doctors? How did you chose or decide on a doctor? > > > Thanks . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 It is a challenge to find out how to play the system that they have set up for us. This is the explanation of how I was able to use the specialist I wanted for my operation. I wanted to use Dr. Luxford at The House Ear Clinic as I had already seen him on a cash basis, but he was not in my then HMO group. I found in the Insurance Provider Directory what group he was affiliated with and picked a primary care doctor in that group even though it was 27 miles from where I live. Unfortunately that new doctor was on vacation for one month. After reading the Medicare and You manual, I discovered that ANY PHYSICIAN can request authorization for you to see a specialist, not just your primary care doctor. So I asked the man at House Ear Institute if he could get me an authorization from Dr. Luxford and he did! I had surgery two months later and had very little pain, no dizziness, just some nausea the day of surgery. I will have the second-look surgery in June and receive a titanium implant. I would recommend Dr. Luxford and the House Ear Clinic to everyone. Ear surgery is all they do and people come from all over the world to see them. If I was you, I would decide what doctor you want to do the surgery and if he is in your group, you can get an authorization. If not in your group, change groups. You have to change by the 15th of the month for it to be effective on the first of the next month. Hope this helps, good luck! > > I got my Primary Doctor to approve a 2nd opinon and I get to go to UCD ENT ear clinic. > > Anyhow below are the doctors: > http://www.sacent.com/index.cfm/fuseaction/site.physicians/action/dtl/phys/99838\ 484.cfm > http://www.ucdmc.ucdavis.edu/otolaryngology/ourteam/faculty/diaz.html > http://www.ucdmc.ucdavis.edu/otolaryngology/ourteam/faculty/brodie.html > http://www.ucdmc.ucdavis.edu/otolaryngology/ourteam/faculty/doyle.html > http://www.ucdmc.ucdavis.edu/otolaryngology/ourteam/faculty/dobie.html > > > I have to wait 10 weeks to see the Dr, and that was the soonest appointment by the 2nd opinon referral. After I see the UCD dr for the second visit, then the Primary doctor get to plan the next step(s). I'm not sure what happens in the long run with this 2nd opinon process. Will my primary let me stay with this doctor ? I have to wait 10 weeks to find out if I get to stay and get approved for more appointments. I hate to wait 10 weeks and not be able to continue seeing the doctors there. I believe that my current ENT is just not qualified to handle my ears if I have a cholesteatoma. They past 2 ENT that I've seen said I have a cholesteatoma but this current ENT that I'm now assigned says that I dont have it because I dont have any symptoms. > > I'm wondering with the whole HMO thing if it would be easier to just drop the current Primary doctor and then get another doctor in the UC Health system. Then the primary doctor in the UC health systhem they can then refer me to the in network ENT which are the UC Ear Clinic. Would this process be better than the 2nd opinon process? > > Is anyone familar with this? I'm trying to use my insurance, but wondering if the 2nd opinon thing will work out in the long run. > > I was wondering if anyone had any experience with ENT or otologist in the UCD health system? > > > THANKS. > Quote Link to comment Share on other sites More sharing options...
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