Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Go see a Otoliogist, not a ENT. Let us know where you live and someone should be able to point you to one... Tom Hansen From: Deb <meirp@...>cholesteatoma Sent: Thursday, February 19, 2009 12:41:54 PMSubject: recurrence after CWD My daugter (28 y.o.) had a CWD several years ago - after many attempts to control c-toma. Things have been going well until recently when she developed dizziness. Saw ENT yesterday and he feels like the c-toma has regrown in the scar tissue!! We are awaiting CT scan results. Anyone with similar experience? Am very concerned about what might be going on and long term effects. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Her physician is an Otolaryngologist and Neurotologist - used ENT as generic term. recurrence after CWD My daugter (28 y.o.) had a CWD several years ago - after many attempts to control c-toma. Things have been going well until recently when she developed dizziness. Saw ENT yesterday and he feels like the c-toma has regrown in the scar tissue!! We are awaiting CT scan results. Anyone with similar experience? Am very concerned about what might be going on and long term effects. Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 I've never experienced this. I have a good friend that did not have cholesteatoma, but the crystals in her inner ear clumped together. She was basically incapacitated until the therapy they did on her worked. I hope that the doc gets to the bottom of this soon for her. Dizzyness isn't fun. Matt meirp@... wrote: > > Her physician is an Otolaryngologist and Neurotologist - used ENT as > generic term. > > > * recurrence after CWD > > My daugter (28 y.o.) had a CWD several years ago - after many attempts > to control c-toma. Things have been going well until recently when she > developed dizziness. Saw ENT yesterday and he feels like the c-toma has > regrown in the scar tissue!! We are awaiting CT scan results. Anyone > with similar experience? Am very concerned about what might be going on > and long term effects. > > > > ------------------------------------------------------------------------ > Access 350+ FREE radio stations anytime from anywhere on the web. Get > the Radio Toolbar > <http://toolbar.aol.com/aolradio/download.html?ncid=emlweusdown00000035>! > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 I am a little confused about “ENT”. I was always under the impression that meant, Ears, Nose & Throat. I see a Neuro Otologist. He deals with the Ears and with skull based surgeries. I previously saw an ENT who referred me to an Otologist. Where I live near Omaha, Nebraska, an ENT is Ears, Nose and Throat DR., an Otologist is a higher level of expertise, just dealing with the Ears. I will have to ask my Dr when I see him next Friday. Tom Hansen, another member of this group see’s my Dr’s brother, who is also an Olologist. I checked on the Internet and they show they same thing as I was told. Ingrid From:cholesteatoma [mailto:cholesteatoma ] On Behalf Of meirp@... Sent: Thursday, February 19, 2009 3:15 PM cholesteatoma Subject: Re: recurrence after CWD Her physician is an Otolaryngologist and Neurotologist - used ENT as generic term. recurrence after CWD My daugter (28 y.o.) had a CWD several years ago - after many attempts to control c-toma. Things have been going well until recently when she developed dizziness. Saw ENT yesterday and he feels like the c-toma has regrown in the scar tissue!! We are awaiting CT scan results. Anyone with similar experience? Am very concerned about what might be going on and long term effects. Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 A Otoligist is a ENT that ONLY works on ears. It is considered a Board approved Speciality for ENT's. It's my understanding that you have to have been a ENT to become a Otoligist. Tom Hansen From: Ingrid Jannetta <ing@...>cholesteatoma Sent: Friday, February 20, 2009 7:27:44 AMSubject: RE: recurrence after CWD I am a little confused about “ENTâ€. I was always under the impression that meant, Ears, Nose & Throat. I see a Neuro Otologist. He deals with the Ears and with skull based surgeries. I previously saw an ENT who referred me to an Otologist. Where I live near Omaha, Nebraska, an ENT is Ears, Nose and Throat DR., an Otologist is a higher level of expertise, just dealing with the Ears. I will have to ask my Dr when I see him next Friday. Tom Hansen, another member of this group see’s my Dr’s brother, who is also an Olologist. I checked on the Internet and they show they same thing as I was told. Ingrid From:cholesteatoma [mailto:cholesteato magroups (DOT) com] On Behalf Of meirp@...Sent: Thursday, February 19, 2009 3:15 PMcholesteatomaSubject: Re: recurrence after CWD Her physician is an Otolaryngologist and Neurotologist - used ENT as generic term. recurrence after CWD My daugter (28 y.o.) had a CWD several years ago - after many attempts to control c-toma. Things have been going well until recently when she developed dizziness. Saw ENT yesterday and he feels like the c-toma has regrown in the scar tissue!! We are awaiting CT scan results. Anyone with similar experience? Am very concerned about what might be going on and long term effects. Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Ingrid, From some well reputed medical dictionaries: neurotology A branch of otology concerned with those parts of the nervous system related to the ear, especially the inner ear and associated brainstem structures. Also called otoneurology. neurotology. (2006). In Mosby's Dictionary of Medicine, Nursing, & Health Professions. Philadelphia, PA: Elsevier Health Sciences. Retrieved February 20, 2009, from http://www.credoreference.com/entry/6682742/. Otology Otology is that branch of medical science which is concerned with disorders and diseases of the organ of hearing – one practising this branch being called an otologist. Otology. (2006). In Black's Medical Dictionary, 41st Edition. London: A & C Black. Retrieved February 20, 2009, from http://www.credoref So, neurotologists have a step higher degree of specialization that just happens to be of importance to those of us that deal with cholesteatoma. There are simply some pretty important nerves in the vicinity that doctors have to contend with. With all of this in mind, my doctor is a neurotologist as well. If there any issues that crop of with nerves in any surgery I undergo, I want that kind of surgeon at the ready. Matt Ingrid Jannetta wrote: > > I am a little confused about “ENT”. I was always under the impression > that meant, Ears, Nose & Throat. I see a Neuro Otologist. He deals > with the Ears and with skull based surgeries. I previously saw an ENT > who referred me to an Otologist. > > Where I live near Omaha, Nebraska, an ENT is Ears, Nose and Throat > DR., an Otologist is a higher level of expertise, just dealing with > the Ears. > > I will have to ask my Dr when I see him next Friday. Tom Hansen, > another member of this group see’s my Dr’s brother, who is also an > Olologist. > > I checked on the Internet and they show they same thing as I was told. > > Ingrid > > *From:*cholesteatoma > [mailto:cholesteatoma ] *On Behalf Of *meirp@... > *Sent:* Thursday, February 19, 2009 3:15 PM > *To:* cholesteatoma > *Subject:* Re: recurrence after CWD > > Her physician is an Otolaryngologist and Neurotologist - used ENT as > generic term. > > > * recurrence after CWD > > My daugter (28 y.o.) had a CWD several years ago - after many attempts > to control c-toma. Things have been going well until recently when she > developed dizziness. Saw ENT yesterday and he feels like the c-toma has > regrown in the scar tissue!! We are awaiting CT scan results. Anyone > with similar experience? Am very concerned about what might be going on > and long term effects. > > ------------------------------------------------------------------------ > > Access 350+ FREE radio stations anytime from anywhere on the web. Get > the Radio Toolbar > <http://toolbar.aol.com/aolradio/download.html?ncid=emlweusdown00000035>! > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 I agree with you 100%. I just had surgery on Tuesday dealing with my facial nerve. The Doctor that I had many years ago did not specialize in the nerve and that is when my facial nerves became an issue. Do you know what other nerves can be affected but Ctoma's? Except for the facial nerve I don't seem to be able to find more specific information. I was still out of it when my Dr told me after surgery that he was still concerned about my facial nerve. I see him next Friday and knowing him he will repeat everything to me again. I am just so relieved that the buzzing in my left ear is down 50% and that the twitching in my left eye and mouth has stopped. I don't know for how long, but I will take what I can get. Thanks Ingrid -----Original Message----- From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 The taste nerve is another one that frequently comes into play. Sorry I don't have a more scientific term for it at the moment ... that would be a reference question to tackle ... but I'll bet someone on the list actually knows the term. Matt Ingrid Jannetta wrote: > > I agree with you 100%. I just had surgery on Tuesday dealing with my > facial > nerve. The Doctor that I had many years ago did not specialize in the > nerve > and that is when my facial nerves became an issue. > > Do you know what other nerves can be affected but Ctoma's? Except for the > facial nerve I don't seem to be able to find more specific information. I > was still out of it when my Dr told me after surgery that he was still > concerned about my facial nerve. I see him next Friday and knowing him he > will repeat everything to me again. I am just so relieved that the buzzing > in my left ear is down 50% and that the twitching in my left eye and mouth > has stopped. I don't know for how long, but I will take what I can get. > > Thanks > Ingrid > > -----Original Message----- > From: cholesteatoma > <mailto:cholesteatoma%40> > [mailto:cholesteatoma > <mailto:cholesteatoma%40>] > On Behalf Of Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 The taste nerve is called the chorda tympani- it is a branch of the facial nerve and runs forward across the middle ear to eventually supply taste to the anterior 2/3rds of the tongue on that side. I believe there was a thread recently on taste disturbance on this site. With best wishesMr WareingConsultant ENT SurgeonSt Bartholomews HospitalThe Royal London HospitalThe London Clinic145 Harley StreetLondon W1G 6BJ020 7935 1304From: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 Taste nerve is Chorda Tympani. Arun On 2/20/09, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 Pictures attached to give idea about the Chorda Tympani- Taste nerve at risk in ear srugery Arun On 2/21/09, Arun Gupta <drarunjind@...> wrote: Taste nerve is Chorda Tympani. Arun On 2/20/09, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 Thank you for the pictures, it gives me a better perspective of nerves. I have 9-10 surgeries for Ctoma’s and Prosthetics in the past 6 years. My first Dr removed a Ctoma and 6 months later placed a Prosthetic on top of a new Ctoma that he did not see. I was in a lot of pain and kept thinking that something was moving in my ear. After 6 months of being told everything was normal I went to see the Dr I have now. One side of the implant was loose and that was what I was hearing, beesides the fact that the prosthestic was sitting on top of the Ctoma. Every time a Dr has put a Titanium Prosthetic in my middle ear, within 6 months I have a Ctoma? Any clue to this? I have problems wearing any type of metal because it seems like my skin is so acidic it eats through the metal. This has happened with Stainless Steel, Silver, Gold, etc. I only wear my wedding ring when my husband and I go out someplace. The last surgery before this one Tuesday was 2 years ago. The Dr built somewhat of a Prosthetic out of my own cartilage. He also put ventilation tubes in both ears. I lasted 2 years with this prosthetic. As least I had some hearing and was able to wear a hearing aid. 6 months ago I had new ear moulds made for my Hearing aids. They have a rubber base that goes furthest into the ear. They changed moulds to improve my hearing with the hearing aids. Since I made that change I have noticed that my ear canal always seemed damp. I would take my hearing aids out a couple times a day and make sure that I dried out the tube and mould of my hearing aids. Of course when I would go to see the Dr the ear would be dry. This surgery I did not have Ctoma but the implant had dissolved and was sitting in a blob at the top of my ear canal? Could the tubes have stopped me from getting Ctoma? Were the moulds holding too much moisture in the ear? I guess after the rest of my surgeries being Somewhat par for the course with Ctoma, I am really confused by this one? I have a million more questions but don’t want to overload anyone. I see my DR on Friday and I always bring him the responses I get from people in this group. He is always interested. Any information definitely appreciated Ingrid From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of Arun Gupta Sent: Saturday, February 21, 2009 2:32 AM cholesteatoma Subject: Re: recurrence after CWD Pictures attached to give idea about the Chorda Tympani- Taste nerve at risk in ear srugery Arun On 2/21/09, Arun Gupta <drarunjind@...> wrote: Taste nerve is Chorda Tympani. Arun On 2/20/09, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 Hi Kazzy, I am going to talk to my Dr & Audiologist about this on Friday. Thanks for the information and anything else you think of I am open too. Ingrid From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of Kazzy Sent: Saturday, February 21, 2009 9:14 AM cholesteatoma Subject: RE: recurrence after CWD Hi Ingrid I wore air conducting hearing aids for years, putting up with the constant wetness of my ears caused by (if not encouraged by) the mould of the hearing aids. On top of this, I had infections and perforations galore – again, probably encouraged by the hearing aids. In the end, I was offered (and opted for) BAHA surgery and to this day, I don’t regret it. I don’t have wet ears any more, I can hear (though it’s a different type of hearing) and I enjoy much better health with far fewer ear infections and perforations than previously. I have a suggestion though, before you even begin to think of the BAHA (if you are that way inclined): I was offered and wore skeleton-type moulds with my hearing aids and, for some time, they helped. This type of mould has far less plastic sitting in the ear and can help those who have a reaction to the material being in the ear. Have you considered this type of mould? Is it possible you could enquire about it? It allows more air into the ear and thereby may allow your ears to be that little bit drier. Just a thought... hope it helps. Kazzy J From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of Ingrid Jannetta Sent: 21 February 2009 14:33 cholesteatoma Subject: RE: recurrence after CWD Thank you for the pictures, it gives me a better perspective of nerves. I have 9-10 surgeries for Ctoma’s and Prosthetics in the past 6 years. My first Dr removed a Ctoma and 6 months later placed a Prosthetic on top of a new Ctoma that he did not see. I was in a lot of pain and kept thinking that something was moving in my ear. After 6 months of being told everything was normal I went to see the Dr I have now. One side of the implant was loose and that was what I was hearing, beesides the fact that the prosthestic was sitting on top of the Ctoma. Every time a Dr has put a Titanium Prosthetic in my middle ear, within 6 months I have a Ctoma? Any clue to this? I have problems wearing any type of metal because it seems like my skin is so acidic it eats through the metal. This has happened with Stainless Steel, Silver, Gold, etc. I only wear my wedding ring when my husband and I go out someplace. The last surgery before this one Tuesday was 2 years ago. The Dr built somewhat of a Prosthetic out of my own cartilage. He also put ventilation tubes in both ears. I lasted 2 years with this prosthetic. As least I had some hearing and was able to wear a hearing aid. 6 months ago I had new ear moulds made for my Hearing aids. They have a rubber base that goes furthest into the ear. They changed moulds to improve my hearing with the hearing aids. Since I made that change I have noticed that my ear canal always seemed damp. I would take my hearing aids out a couple times a day and make sure that I dried out the tube and mould of my hearing aids. Of course when I would go to see the Dr the ear would be dry. This surgery I did not have Ctoma but the implant had dissolved and was sitting in a blob at the top of my ear canal? Could the tubes have stopped me from getting Ctoma? Were the moulds holding too much moisture in the ear? I guess after the rest of my surgeries being Somewhat par for the course with Ctoma, I am really confused by this one? I have a million more questions but don’t want to overload anyone. I see my DR on Friday and I always bring him the responses I get from people in this group. He is always interested. Any information definitely appreciated Ingrid From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of Arun Gupta Sent: Saturday, February 21, 2009 2:32 AM cholesteatoma Subject: Re: recurrence after CWD Pictures attached to give idea about the Chorda Tympani- Taste nerve at risk in ear srugery Arun On 2/21/09, Arun Gupta <drarunjind@...> wrote: Taste nerve is Chorda Tympani. Arun On 2/20/09, Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.