Re: C-Toma / Eustachian Tube Dysfunction

March 10, 2006

Yes I had the exact same problems, a very long time ago. My surgery was performed in Grand Rapids at the St 's Hospital. U of M sent me back to my ENT and said he was one of the finest in the land - - that was in 1972! I have non functioning or very poor functioning Eustachian tubes at best. My reconstruction was done and it took a few attempts to get the drum just right ( tympanic membrane) but on about the 4th try they got it and the ear has been "functioning" ever since. HOWEVER, what they say is true, the negative pressure will cause the bones to collapse over time ( where I am now 30+ years later). I would think that with today's technology they would be able to overcome the problem. Perhaps a PE tube in the ear to help release the neg pressure. The docs want to say that the e tube developed by age 9 or 10 - I can tell you that my daughter had PE tubes until she was in her late teens! She has her mom's rotten e-tubes, BUT she is ok now and they did develop enough to get her by. I am sure that Mott will have encouraging information for you. My surgery was done with a synthetic bone and a piece of wire! I know they don't do that anymore. It is all much better. Perhaps a trip to House or Washington University would be worth while this summer when school is out.

Mott is top notch, but you never know.

Good Luck

Sandi

Lochner

March 10, 2006

You live in Grand Rapids? How Strange??? I used to live on s Lake when I lived there. I hear my old house is for sale again, for about 15 times more than I sold it for in the 70's!!! My left ear had the same problem and they did not reconstruct, because at that time the right ear was "normal" what ever that is. The right ear "got sick" a couple of years later. I went to a different doc Dr. Wringenberg or something like that. In my mind he was a saint. Very old at the time so I am sure he is gone by now. When I moved from GR to St Louis he referred me to Wash U and another wonderful Doc. I have been seeing him since 1976 we have grown old together Ha Ha ( he more so than I!!!) I have lived in Houston for the past 25 years but have continued my care with him, traveling to STL as needed. I credit him for preserving what hearing I have. My left has always been at a 80-90% loss the right used to be at 25-30% loss and I got along fine until the last few years when the "old bones" started to tumble. At some point the wire they used to conduct sound from the stapes to the foot plate, disappeared! my hearing took a shift then and has gone down hill ever since to where I am currently at 60% loss. I'm looking into BAHA now that's how I got into this chat site.

Good Luck

Sandi

Lochner

March 10, 2006

Just a side note, I think I worked with a Mrs Sparks (can't remember her first name) at Blodgett Memorial Clinic in the 70's. She had ,as I recall, 2 sons and maybe a daughter. If she were living she would be somewhere in her 70's I would guess. Any relation??

Sandi

Lochner

March 10, 2006

It amazes me, at 59, for all these years I thought I was the only person with these problems. Now, I learn there is a world of them. Others who can understand about ears that never pop or how a cold can totally turn your ears off. I AM amazed!

Sandi

Lochner

March 10, 2006

Sandy,

Thank you for the information. Although, I am sorry that you have had these same problems it is a comfort to know that there are others that can relate. It seems to me that if you have had functional hearing for 30+ years that this would be at least be an option for my son. The ENT here in GR won't even consider it. I am not ready to throw in the towel on his hearing yet. That is why we are hoping that MOTT can help. Thank you for sharing.

-----Original Message-----From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of SDSSandie@...Sent: Friday, March 10, 2006 3:06 PMcholesteatoma Subject: Re: C-Toma / Eustachian Tube Dysfunction

Yes I had the exact same problems, a very long time ago. My surgery was performed in Grand Rapids at the St 's Hospital. U of M sent me back to my ENT and said he was one of the finest in the land - - that was in 1972! I have non functioning or very poor functioning Eustachian tubes at best. My reconstruction was done and it took a few attempts to get the drum just right ( tympanic membrane) but on about the 4th try they got it and the ear has been "functioning" ever since. HOWEVER, what they say is true, the negative pressure will cause the bones to collapse over time ( where I am now 30+ years later). I would think that with today's technology they would be able to overcome the problem. Perhaps a PE tube in the ear to help release the neg pressure. The docs want to say that the e tube developed by age 9 or 10 - I can tell you that my daughter had PE tubes until she was in her late teens! She has her mom's rotten e-tubes, BUT she is ok now and they did develop enough to get her by. I am sure that Mott will have encouraging information for you. My surgery was done with a synthetic bone and a piece of wire! I know they don't do that anymore. It is all much better. Perhaps a trip to House or Washington University would be worth while this summer when school is out.

Mott is top notch, but you never know.

Good Luck

Sandi

Lochner

March 10, 2006

My question is this: The ENT says that there is no sense in reconstructing the middle ear because the Eustachian tube does not work and the negative pressure will continue and collapse the middle ear eventually anyway. Hi

I had the same said to me 20 years ago. They said no reconstruction was possible because my Eustachian tubes had never opened, probably since birth. My ears had never "popped" and I always seemed to have perforated eardrums. They even tried putting electricity down the Eustachian tubes (really) to shock them open but that didn't work either.

When I came to have surgeries for ctoma I was in similar situation to the one you describe - no earbones, no eardrum, facial nerve and balance problems. I had a couple of full radical mastoidectomies which means that the mastoid, ear canal and middle ear are just left as one enlarged, continuous space with nothing in there. That's not a very good situation and once again the doctor told me there was nothing that could be done to improve my hearing. I'd been stone deaf in that ear for as long as I could so it didn't really matter much to me.

A couple of years later though, the doctor changed his mind, decided to close up the ear and try reconstruction. He told me that reconstruction might not work and that the hearing wouldn't be very good if it did. In fact it worked far better than anyone expected.

They had to do quite a lot of rebuilding - they put in a TORP and small piston to replace the missing stapes footplate. The eardrum was made from a piece of muscle - half the size of a normal eardrum because a smaller eardrum is less vulnerable to being sucked in. Also because I've had canal wall down surgeries there is a opening between the ear canal and the mastoid and I understand there is also some kind of air passage between the mastoid and the middle ear which overcomes the Eustachian tube problem. It took 10 hours of surgery to do all of that and he told me it was tricky.

My doctor is pretty ambitious and not sure there are many others who would bother

with something that seems experimental. If you have no joy finding a doctor who will try reconstruction, another possibility might be BAHA. I t affords much better hearing but not everyone is a candidate it. There are a few people on this site who can tell you more about it.

Phil

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March 13, 2006

,

My understanding of Ctoma is that it can be different for each and every case. I don't know a doctor alive that would say once it's gone it's gone! You can't predict that! I have a history of "ear infections" through childhood and my teen years. I was in my early/mid 20's when the first diagnosis was made. I have heard that Ctomas often follow a history of ear infections, and some information indicates that the chronic ear infections may have some bearing on the occurrence of Ctoma. My first surgery was deemed a success with reconstruction being done. Low and behold, the Ctoma returned about two years later. A more radical procedure was done, with no reconstruction as the floor of the middle ear was completely "wiped out". Now, more than 30+ years later, there is another very small Ctoma there again!!! My dr is going to leave it alone because of the risk of yet another surgery, at least until it increases to 4 times it's present size. Sooooo - to say that once it is gone - it is gone certainly isn't what I, or many others for that matter, have experienced. Arm yourself with knowledge! It is your best defense and don't be afraid to question your physician. I worked 20 years in the medical field and believe me, doctors are NOT ALWAYS right! If you exhibit your knowledge you may find out that you actually know MORE than the physician about the habits of the Ctoma!

Good Luck and Keep Searching and Reading!

Sandi

Lochner

March 13, 2006

Sandi,

I am wondering when all of this started for you, my son has had a lot of ear infections, eardrum perf. etc. but it wasn't until this last year at the age of 13 that we have had the c-toma problems. Most of what I am hearing on this site is young children--4 and 5 year olds. Did your c-toma recurr after the initial problems. 's ENT here in GR tells me that once the c-toma is gone that it will never recurr. That is not what I am understanding from the info. on this site.

-----Original Message-----From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of SDSSandie@...Sent: Friday, March 10, 2006 5:03 PMcholesteatoma Subject: Re: C-Toma / Eustachian Tube Dysfunction

It amazes me, at 59, for all these years I thought I was the only person with these problems. Now, I learn there is a world of them. Others who can understand about ears that never pop or how a cold can totally turn your ears off. I AM amazed!

Sandi

Lochner

March 13, 2006

Phil,

Thank you for your reply. It is so nice to actually talk with people who know what I am talking about.

How old were you when all this was happening. Where did you have this reconstructive surgery done and What and how does BAHA work. Sorry for all the questions -- just want to be well informed when we take to U of M.

Thank You

Parks

-----Original Message-----From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of Phil Sent: Friday, March 10, 2006 4:07 PMcholesteatoma Subject: Re: C-Toma / Eustachian Tube Dysfunction

My question is this: The ENT says that there is no sense in reconstructing the middle ear because the Eustachian tube does not work and the negative pressure will continue and collapse the middle ear eventually anyway. Hi

I had the same said to me 20 years ago. They said no reconstruction was possible because my Eustachian tubes had never opened, probably since birth. My ears had never "popped" and I always seemed to have perforated eardrums. They even tried putting electricity down the Eustachian tubes (really) to shock them open but that didn't work either.

When I came to have surgeries for ctoma I was in similar situation to the one you describe - no earbones, no eardrum, facial nerve and balance problems. I had a couple of full radical mastoidectomies which means that the mastoid, ear canal and middle ear are just left as one enlarged, continuous space with nothing in there. That's not a very good situation and once again the doctor told me there was nothing that could be done to improve my hearing. I'd been stone deaf in that ear for as long as I could so it didn't really matter much to me.

A couple of years later though, the doctor changed his mind, decided to close up the ear and try reconstruction. He told me that reconstruction might not work and that the hearing wouldn't be very good if it did. In fact it worked far better than anyone expected.

They had to do quite a lot of rebuilding - they put in a TORP and small piston to replace the missing stapes footplate. The eardrum was made from a piece of muscle - half the size of a normal eardrum because a smaller eardrum is less vulnerable to being sucked in. Also because I've had canal wall down surgeries there is a opening between the ear canal and the mastoid and I understand there is also some kind of air passage between the mastoid and the middle ear which overcomes the Eustachian tube problem. It took 10 hours of surgery to do all of that and he told me it was tricky.

My doctor is pretty ambitious and not sure there are many others who would bother

with something that seems experimental. If you have no joy finding a doctor who will try reconstruction, another possibility might be BAHA. I t affords much better hearing but not everyone is a candidate it. There are a few people on this site who can tell you more about it.

Phil

March 13, 2006

Sandi,

My name is Parks. I know that from my e-mail address you probably thought it was Sparks, sorry I don't know the lady.

-----Original Message-----From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of SDSSandie@...Sent: Friday, March 10, 2006 3:58 PMcholesteatoma Subject: Re: C-Toma / Eustachian Tube Dysfunction

Just a side note, I think I worked with a Mrs Sparks (can't remember her first name) at Blodgett Memorial Clinic in the 70's. She had ,as I recall, 2 sons and maybe a daughter. If she were living she would be somewhere in her 70's I would guess. Any relation??

Sandi

Lochner

March 13, 2006

Hi

My cholesteatoma seems to have been 'adult-onset'. I was diagnosed with cholesteatoma when I was aged 37, having had almost constant ear problems since the age of 23-24. I had a radical modified mastoidectomy, tympanoplasty and ossiculoplasty carried out in November 1999, but then a terrible ear infection in March 2003 caused the loss of the implanted bones. I had my BAHA surgery in November 2003 as a result of that ear infection, and got the sound processor in May 2004.

Wishing you all the best in your battle against this beast.

Kazzy

xx

RE: C-Toma / Eustachian Tube Dysfunction