Guest guest Posted March 26, 2004 Report Share Posted March 26, 2004 Hello, everyone, I have just joined this group and, after reading through the messages of the past few days, know that you all have been through a lot. I have been reading up of Ctoma's on the internet after my ENT shocked me with the news. I've had a CT scan and go in next week to figure out the plan. I have a list of about 25 questions for him now. My first question for you all is any suggestions to make sure I am going to have this take care of properly. I am in my mid 50's and, in the past few days have gone from being concerned about facial nerve damage to just wanting the CToma out before it gets out of hand. Of course I would prefer to keep bilateral hearing (my loss now is 40% in my left ear, and that isn't much of a problem).The ENT is in the otology department of a university hospital. He indicated on my initial visit that surgery was the only option and that he couldn't be sure of the extent of the surgery until he was in there. Ok, just let me know your ideas of the questions I need to ask next Tuesday. Thanks very much. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2004 Report Share Posted March 26, 2004 Hi le Welcome to the group. I am in my mid 40's... I had my c-toma removed in May 2001, and I am going to have reconstruction done on April 13th. Obviously you have researched this condition, and there is a lot of information that will help you. I learned of this site after my surgery. Ask if you will be having a Canal Wall Down or a Canal Wall Up. It is sometimes difficult for the surgeon to give you an exact plan as to the surgery, some just tell you it is a mastoidectomy and they will know what to do once they see the extent of the growth/damage. But you can ask what he usually does... For a Canal Wall Down, the surgery can last up to 4.5 or more hours, so let your family know before you go in, so they wont panic at the length of time it takes. Ask him/her about the packing... how long it will be in, after care etc... Glad you joined. Lynn -- New Member, has questions Hello, everyone, I have just joined this group and, after reading through the messages of the past few days, know that you all have been through a lot. I have been reading up of Ctoma's on the internet after my ENT shocked me with the news. I've had a CT scan and go in next week to figure out the plan. I have a list of about 25 questions for him now. My first question for you all is any suggestions to make sure I am going to have this take care of properly. I am in my mid 50's and, in the past few days have gone from being concerned about facial nerve damage to just wanting the CToma out before it gets out of hand. Of course I would prefer to keep bilateral hearing (my loss now is 40% in my left ear, and that isn't much of a problem).The ENT is in the otology department of a university hospital. He indicated on my initial visit that surgery was the only option and that he couldn't be sure of the extent of the surgery until he was in there. Ok, just let me know your ideas of the questions I need to ask next Tuesday. Thanks very much. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 Thanks, Lynne. It is an incredible relief to communicate with someone who has had this. And now a stupid question. Do they fit you with a hearing aid or something so you can hear out of the c-toma ear between initial surgery and reconstruction? I thought the doctor mentioned MONTHS rather than YEARS before reconstruction, but I guess I didn't hear him correctly! le ---------- From: Lynn Witkowski <lynnwit@...> cholesteatoma Subject: Re: New Member, has questions Date: Fri, Mar 26, 2004, 10:44 PM Hi le Welcome to the group. I am in my mid 40's... I had my c-toma removed in May 2001, and I am going to have reconstruction done on April 13th. Obviously you have researched this condition, and there is a lot of information that will help you. I learned of this site after my surgery. Ask if you will be having a Canal Wall Down or a Canal Wall Up. It is sometimes difficult for the surgeon to give you an exact plan as to the surgery, some just tell you it is a mastoidectomy and they will know what to do once they see the extent of the growth/damage. But you can ask what he usually does... For a Canal Wall Down, the surgery can last up to 4.5 or more hours, so let your family know before you go in, so they wont panic at the length of time it takes. Ask him/her about the packing... how long it will be in, after care etc... Glad you joined. Lynn -- New Member, has questions Hello, everyone, I have just joined this group and, after reading through the messages of the past few days, know that you all have been through a lot. I have been reading up of Ctoma's on the internet after my ENT shocked me with the news. I've had a CT scan and go in next week to figure out the plan. I have a list of about 25 questions for him now. My first question for you all is any suggestions to make sure I am going to have this take care of properly. I am in my mid 50's and, in the past few days have gone from being concerned about facial nerve damage to just wanting the CToma out before it gets out of hand. Of course I would prefer to keep bilateral hearing (my loss now is 40% in my left ear, and that isn't much of a problem).The ENT is in the otology department of a university hospital. He indicated on my initial visit that surgery was the only option and that he couldn't be sure of the extent of the surgery until he was in there. Ok, just let me know your ideas of the questions I need to ask next Tuesday. Thanks very much. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 Hi le, No I don't think they will suggest a hearing aid, unless you don't want reconstruction. However, if you are deaf in both ears, then perhaps that is an option for you. A lot of people with c-toma have trouble with hearing aids, because of ear drainage. My hearing loss is only in one ear, so a hearing aid is a last resort for me. As far as waiting for reconstruction, I think it depends on the procedure that is done. Some people have a CWU and reconstruction done at the same time. I think with CWD, if they can do the reconstruction, it is much later, and that all depends on the damage caused by the c-toma. Initially, they thought I could not have it done, that there was too great a risk to my facial nerve. And it all depended on how the ear drum healed... It is different for everyone. Sorry though, I made a mistake, my surgery was actually May 2002. But still had to wait 2years. Lynn -- Re: New Member, has questions Thanks, Lynne. It is an incredible relief to communicate with someone who has had this. And now a stupid question. Do they fit you with a hearing aid or something so you can hear out of the c-toma ear between initial surgery and reconstruction? I thought the doctor mentioned MONTHS rather than YEARS before reconstruction, but I guess I didn't hear him correctly!le----------From: Lynn Witkowski <lynnwit@...>cholesteatoma Subject: Re: New Member, has questionsDate: Fri, Mar 26, 2004, 10:44 PM Hi leWelcome to the group. I am in my mid 40's... I had my c-toma removed in May2001, and I am going to have reconstruction done on April 13th.Obviously you have researched this condition, and there is a lot ofinformation that will help you. I learned of this site after my surgery. Ask if you will be having a Canal Wall Down or a Canal Wall Up. It issometimes difficult for the surgeon to give you an exact plan as to thesurgery, some just tell you it is a mastoidectomy and they will know what todo once they see the extent of the growth/damage. But you can ask what heusually does... For a Canal Wall Down, the surgery can last up to 4.5 ormore hours, so let your family know before you go in, so they wont panic atthe length of time it takes. Ask him/her about the packing... how long itwill be in, after care etc... Glad you joined. Lynn -------Original Message------- From: cholesteatoma Date: 03/26/04 22:30:56cholesteatoma Subject: New Member, has questions Hello, everyone, I have just joined this group and, after reading through the messages of thepast few days, know that you all have been through a lot. I have beenreading up of Ctoma's on the internet after my ENT shocked me with the news.I've had a CT scan and go in next week to figure out the plan. I have a listof about 25 questions for him now. My first question for you all is anysuggestions to make sure I am going to have this take care of properly. I amin my mid 50's and, in the past few days have gone from being concernedabout facial nerve damage to just wanting the CToma out before it gets outof hand. Of course I would prefer to keep bilateral hearing (my loss now is40% in my left ear, and that isn't much of a problem).The ENT is in theotology department of a university hospital. He indicated on my initialvisit that surgery was the only option and that he couldn't be sure of theextent of the surgery until he was in there. Ok, just let me know yourideas of the questions I need to ask next Tuesday. Thanks very much. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 reconsruction depends on how the patient recovers from their prevois ops. Mine was 4 years after my cwd.... tom hansen --- Bondurant <sbondurant@...> wrote: > Thanks, Lynne. It is an incredible relief to > communicate with someone who > has had this. And now a stupid question. Do they > fit you with a hearing aid > or something so you can hear out of the c-toma ear > between initial surgery > and reconstruction? I thought the doctor mentioned > MONTHS rather than YEARS > before reconstruction, but I guess I didn't hear him > correctly! > > le > > ---------- > From: Lynn Witkowski <lynnwit@...> > cholesteatoma > Subject: Re: New Member, has > questions > Date: Fri, Mar 26, 2004, 10:44 PM > > > Hi le > > Welcome to the group. I am in my mid 40's... I had > my c-toma removed in May > 2001, and I am going to have reconstruction done on > April 13th. > > Obviously you have researched this condition, and > there is a lot of > information that will help you. I learned of this > site after my surgery. > Ask if you will be having a Canal Wall Down or a > Canal Wall Up. It is > sometimes difficult for the surgeon to give you an > exact plan as to the > surgery, some just tell you it is a mastoidectomy > and they will know what to > do once they see the extent of the growth/damage. > But you can ask what he > usually does... For a Canal Wall Down, the surgery > can last up to 4.5 or > more hours, so let your family know before you go > in, so they wont panic at > the length of time it takes. Ask him/her about the > packing... how long it > will be in, after care etc... > > Glad you joined. > > Lynn > > > > -- New Member, has questions > > > > Hello, everyone, > > > > I have just joined this group and, after reading > through the messages of the > > past few days, know that you all have been through a > lot. I have been > > reading up of Ctoma's on the internet after my ENT > shocked me with the news. > > I've had a CT scan and go in next week to figure out > the plan. I have a list > > of about 25 questions for him now. My first question > for you all is any > > suggestions to make sure I am going to have this > take care of properly. I am > > in my mid 50's and, in the past few days have gone > from being concerned > > about facial nerve damage to just wanting the CToma > out before it gets out > > of hand. Of course I would prefer to keep bilateral > hearing (my loss now is > > 40% in my left ear, and that isn't much of a > problem).The ENT is in the > > otology department of a university hospital. He > indicated on my initial > > visit that surgery was the only option and that he > couldn't be sure of the > > extent of the surgery until he was in there. Ok, > just let me know your > > ideas of the questions I need to ask next Tuesday. > Thanks very much. > > > > le > > > > > > > > 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.