Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Shirley, My God, this doesn't sound right to me either. I agree with you-- he lied by ommission. Something this important you should know beforehand. Maybe he wanted to be sure before he said anything or believes it's no big deal. That's just wrong. My son's doctor told us he suspected it was c-toma months before surgery. He waited until he got the ear cleaned up enough to see the c-toma but told us in the beginning what he suspected and what it meant. By the time he could confirm it we knew what it was and what had to be done and what the long term consequences were. Whether or not this guy is the right doctor depends on a lot of things. Is he good at what he does? Is your child comfortable with him? Maybe you can check him out through the state or the ama or some of those websites that report on doctors while you're waiting for the next visit. It's really hard when it's your child. Things you accept for yourself are not good enough when it comes to your child. It's especially hard when your child is young. My son ended up with a canal wall down procedure which means life long follow up care so when the Navy brought in a new ENT who we thought was not qualified to treat my son (he had a bad attitude) we had our son sent back to his original ENT who had since gotten out of the Navy. My son is comfortable with him and we have alot of confidence in him. Their relationship is going to be an important part of my son's life so we let him make the decision but we agreed with him completely. I hope you can find a doctor that you and your child are both comfortable with and have confidence in as well. Let us all know how it goes. In the meantime, you're in our prayers. > > > > > > Hi, I am new to this cholesteatoma thing. Haven't gotten much info > > yet. My eight year old just had surgery the 12th to repair a hole > in > > the eardrum, and the surgeon came out and told us he found the " C " > > and not to worry he would follow through, but from things I have > > found on the Net, and heard from this group it is way more serious > > than he stated. Any ideas for me. Appreciate any and all help I > can > > get. He took out two hearing bones and went through the mastoid to > > clear it all out. > > Shirley Moma > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 I would just like to ask, what is the average time most people have to wait between diagnosis and surgery? I ask this because my daughter was diagnosed in July, and her appt for surgery has only just arrived and is scheduled for 8th Dec. This seems to be quite a bit longer than most of you guys are waiting Thanks Nicki >From: Shirley Moma <shirleymoma@...> >Reply-cholesteatoma >cholesteatoma >Subject: Re: Re: Newbie >Date: Wed, 17 Nov 2004 07:09:26 -0800 (PST) > >: >Thanks for your encouragement. The most aggravating thing is that she had >had some trouble after swimming lessons, took her to her Ped. and he saw >something and sent her to an ENT who immediatly said she needed the ear >drum repaired, but it would never work if she had her tonsils and adnoids, >and he did that surgery and sent her to an Otologist to do the ear repair. >He said he was going to do a simple procedure to repair the ear drum, and >we went to the hospital, signed her in and I noticed the C-toma word on the >admission papers but what did I know thinking it was what he said he was >going to do. After the surgery he came and told us he found the C-toma, >and all the necessary things he did to remove it all, which is fine, but >afterward thinking it over, I feel he KNEW all along that was what was >going to be done, and lied to me by ommission! He never told us how it >would become an ongoing thing and how dangerous it could be. He will see >her in three weeks, then in six months he > will go back in and do the reconstruction, and maybe she will be back to >hearing , maybe not. I do not feel I am getting the correct info from him, >and cannot wait for that first follow up appt. I am afraid he might not be >the Dr. she will need to get her through this. I was so glad to find this >group, now I do know some things about it and will have a long list of >questions for him, and think if he is hesitant to answer or makes light of >it, I will just find another. We are in Phoenix, Az by the way and if >anyone in this area knows any Physicians who are good please let me know. >Shirley > > >cathy <cathym.bscpa@...> wrote: > >Shirley, >It sounds like the doc took care of the c-toma if he took out the >hearing bones and cleaned out the mastoid. That's well beyond >repairing the eardrum. I would ask the surgeon to tell you exactly >if he rmoved the c-toma and what follow up he has planned. If he did >a canal wall up procedure then he'll need to do a second-look surgery >sometime in the next year. I'm sure he plans on giving you more info >at your child's follow up visit but you should be prepared with a >list of questions to ask him. In the meantime, I'm sure you can tell >by what you've read that water is the enemy and you need to keep the >ear dry no matter what has already been done and what else needs to >be done. >Good luck, > > > > > > > > Hi, I am new to this cholesteatoma thing. Haven't gotten much info > > yet. My eight year old just had surgery the 12th to repair a hole >in > > the eardrum, and the surgeon came out and told us he found the " C " > > and not to worry he would follow through, but from things I have > > found on the Net, and heard from this group it is way more serious > > than he stated. Any ideas for me. Appreciate any and all help I >can > > get. He took out two hearing bones and went through the mastoid to > > clear it all out. > > Shirley Moma > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Seems like it should be soon, I have read that it can grow very fast, but then I have read that it usually doesn't. My child was diagnosed on the day of surgery. But the problem began in June which made it 5 months before surgery in Nov. I am waiting for some facts from the dr. in Dec. I don't even know if she has packing in the ear, or anything, and I am very anxious to find out what is really going on. ShirleyNicola Wiltshire <goodsell69@...> wrote: I would just like to ask, what is the average time most people have to wait between diagnosis and surgery? I ask this because my daughter was diagnosed in July, and her appt for surgery has only just arrived and is scheduled for 8th Dec. This seems to be quite a bit longer than most of you guys are waiting Thanks Nicki>From: Shirley Moma >Reply-cholesteatoma >cholesteatoma >Subject: Re: Re: Newbie>Date: Wed, 17 Nov 2004 07:09:26 -0800 (PST)>>:>Thanks for your encouragement. The most aggravating thing is that she had >had some trouble after swimming lessons, took her to her Ped. and he saw >something and sent her to an ENT who immediatly said she needed the ear >drum repaired, but it would never work if she had her tonsils and adnoids, >and he did that surgery and sent her to an Otologist to do the ear repair. >He said he was going to do a simple procedure to repair the ear drum, and >we went to the hospital, signed her in and I noticed the C-toma word on the >admission papers but what did I know thinking it was what he said he was >going to do. After the surgery he came and told us he found the C-toma, >and all the necessary things he did to remove it all, which is fine, but >afterward thinking it over, I feel he KNEW all along that was what was >going to be done, and lied to me by ommission! He never told us how it >would become an ongoing thing and how dangerous it could be. He will see >her in three weeks, then in six months he> will go back in and do the reconstruction, and maybe she will be back to >hearing , maybe not. I do not feel I am getting the correct info from him, >and cannot wait for that first follow up appt. I am afraid he might not be >the Dr. she will need to get her through this. I was so glad to find this >group, now I do know some things about it and will have a long list of >questions for him, and think if he is hesitant to answer or makes light of >it, I will just find another. We are in Phoenix, Az by the way and if >anyone in this area knows any Physicians who are good please let me know.>Shirley>>>cathy wrote:>>Shirley,>It sounds like the doc took care of the c-toma if he took out the>hearing bones and cleaned out the mastoid. That's well beyond>repairing the eardrum. I would ask the surgeon to tell you exactly>if he rmoved the c-toma and what follow up he has planned. If he did>a canal wall up procedure then he'll need to do a second-look surgery>sometime in the next year. I'm sure he plans on giving you more info>at your child's follow up visit but you should be prepared with a>list of questions to ask him. In the meantime, I'm sure you can tell>by what you've read that water is the enemy and you need to keep the>ear dry no matter what has already been done and what else needs to>be done.>Good luck,>>> >> >> > Hi, I am new to this cholesteatoma thing. Haven't gotten much info> > yet. My eight year old just had surgery the 12th to repair a hole>in> > the eardrum, and the surgeon came out and told us he found the "C"> > and not to worry he would follow through, but from things I have> > found on the Net, and heard from this group it is way more serious> > than he stated. Any ideas for me. Appreciate any and all help I>can> > get. He took out two hearing bones and went through the mastoid to> > clear it all out.> > Shirley Moma>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2005 Report Share Posted February 5, 2005 Hi Dani, I don't know when I hear someone so young has a hip replacement done and I didn't have mind done until I was 57 that was the year 2000 mind didn't go that well so I'm happy when I hear of the young ones hip operations went ok. Well I welcome you to the group and your learn a lot from this group I did . Susie -------------- Original message -------------- > > > > Just wanted to introduced myself. My name is Dani and I'm 30 years > old. I had a total hip replacement in 2001. I think it's the best > thing I ever did. I'm looking forward to getting to know people who > understand the daily trials I go through. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2005 Report Share Posted February 5, 2005 Hi Dani, I am 44 and just had a THR in December 2004, I think most of us here know what u r going thru, yet as with some of us our ops were more recent..I am sure u can teach us a thing or two, as u had yours a few years ago... I am interested to know what your daily trials are..? Mark > Hi Dani, > I don't know when I hear someone so young has a hip replacement done and I didn't have mind done until I was 57 that was the year 2000 mind didn't go that well so I'm happy when I hear of the young ones hip operations went ok. Well I welcome you to the group and your learn a lot from this group I did . > Susie > > > > -------------- Original message -------------- > > > > > > > > > Just wanted to introduced myself. My name is Dani and I'm 30 years > > old. I had a total hip replacement in 2001. I think it's the best > > thing I ever did. I'm looking forward to getting to know people who > > understand the daily trials I go through. > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 Hi Dani, I am here, too. Marge Dear Dani,Welcome also. Gee--after 4 years, are you continuing to go through daily trials? Do you feel you can share them with us? Eleanor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2005 Report Share Posted February 7, 2005 Hi le, Welcome to the group. What was the reason for your op at such a young age? I am 34 and I had a TLHR and bone grafting 4/10/04 and my recovery has been slow. I’m glad that you feel it was a good thing to do- I don’t see it that way at the mo. Jo From: le [mailto:kitchengifts4u@...] Sent: 04 February 2005 13:33 Joint Replacement Subject: newbie Just wanted to introduced myself. My name is Dani and I'm 30 years old. I had a total hip replacement in 2001. I think it's the best thing I ever did. I'm looking forward to getting to know people who understand the daily trials I go through. Be your own advocate! The best patient is an informed patient! -- No virus found in this incoming message. Checked by AVG Anti-Virus. Version: 7.0.300 / Virus Database: 265.8.5 - Release Date: 03/02/2005 -- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.300 / Virus Database: 265.8.5 - Release Date: 03/02/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2005 Report Share Posted February 8, 2005 Thank you to all of you that gave me such a warm welcome. Some of you asked for more background on me, so here goes.... When I was 12 years old, I dislocated my right hip. It wasn't something that just suddenly happened. I limped around for a while and my parents just thought I was doing it to get attention. Finally, my dad took me to see a bone specialist and we found out the truth. I had 3 pins put in my hip a week later with the hopes that it would heal itself. It didn't. Nine months later I was told the pins had to come out because they were causing other problems. I eventually developed arthritis which destroyed what was left of my hip. I was told I would have to have a replacement when I was done growing. By the time I would have " finished growing " , I was working a full time plus job in a restaurant, sometimes pulling 12 hour shifts. I still didn't have enough money to get the surgery I needed and state assistance was out of the question. I met a wonderful man in 1999 that said he would take care of me. He watched me day after day struggling to stand or walk and felt it would be best if I quit my job. I still worked once in a while on a call in basis for about a year until the place closed. Immediately, my mom started pushing me to sign up for state assistance and disability since I was no longer working. Luckily, I was approved for both. I had my replacement in January of 2001. I was so scared, but I kept thinking of the benefits. My fiance' had just bought me a new house and I couldn't even take care of it or him. I couldn't walk in the grocery store or anywhere else for that matter. I was told I would be in a wheelchair by the time I turned 30. The recovery was hard, but worth it. The pain from the arthritis went away and I felt better than I had in years. I have recently developed arthritis in my knees, left hip and lower back. Some days it's unbearable, but then I think about where I was 4 years ago and just keep pushing. Everybody heals differently. I wish everyone the best. Thank you for letting me share. Dani Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 Dear Dani, Thankyou so much for sharing with us. Oh my--you have been through so much and at such a young age. What has helped you get through it? I am sure if I asked your fiancé, your Mom or your friends they could tell us. How frustrating (to put it mildly!) to have the new problems with arthritis. I'm assuming you've tried glucosamine sulphate? It certainly seems to work for some people in helping arthritic pain--was amazing for my husband, but not so much for me. My cousin who is a vets uses it on arthritic animals and finds it can help a lot. There have also been good medical trials. Some people also find different diets (usually non-inflammatory foods eg cutting out acid fruits like oranges and tomatoes) help with arthritis--but different things seem to work (or not) for different people, so one needs to experiment. I found trying out different arthritis diets helped me lose weight at least, which of course, helped my arthritis. Am not convinced cutting out certain foods helped me personally. I also have arthritis in my back and use Pilates and Technique. You probably don't have ' Technique' in the States? I live in England. But I have found that by using my back differently when sitting, standing and walking, it helps the Arthritis. Just curious if you have tried any other non-medical things for your back? Some people find gentle Yoga helpful as well. But all that doesn't help your knees. And finally, it is dreadful about needing 'assistance' or insurance for operations. It is so good in England having the National Health Service. Even though we all complain about aspects of it from time to time, it is invaluable and does such good work. Eleanor Re: newbie Thank you to all of you that gave me such a warm welcome. Some of you asked for more background on me, so here goes.... When I was 12 years old, I dislocated my right hip. It wasn't something that just suddenly happened. I limped around for a while and my parents just thought I was doing it to get attention. Finally, my dad took me to see a bone specialist and we found out the truth. I had 3 pins put in my hip a week later with the hopes that it would heal itself. It didn't. Nine months later I was told the pins had to come out because they were causing other problems. I eventually developed arthritis which destroyed what was left of my hip. I was told I would have to have a replacement when I was done growing. By the time I would have " finished growing " , I was working a full time plus job in a restaurant, sometimes pulling 12 hour shifts. I still didn't have enough money to get the surgery I needed and state assistance was out of the question. I met a wonderful man in 1999 that said he would take care of me. He watched me day after day struggling to stand or walk and felt it would be best if I quit my job. I still worked once in a while on a call in basis for about a year until the place closed. Immediately, my mom started pushing me to sign up for state assistance and disability since I was no longer working. Luckily, I was approved for both. I had my replacement in January of 2001. I was so scared, but I kept thinking of the benefits. My fiance' had just bought me a new house and I couldn't even take care of it or him. I couldn't walk in the grocery store or anywhere else for that matter. I was told I would be in a wheelchair by the time I turned 30. The recovery was hard, but worth it. The pain from the arthritis went away and I felt better than I had in years. I have recently developed arthritis in my knees, left hip and lower back. Some days it's unbearable, but then I think about where I was 4 years ago and just keep pushing. Everybody heals differently. I wish everyone the best. Thank you for letting me share. Dani Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 Eleanor, My family and friends were so great with my recovery. My mom came and stayed with us for 3 months to help me so my fiance' could work and when she needed to run errands, my friends came out to help me if I felt I needed it. I had a slow recovery compared to today's surgeries. I used a walker for 4 weeks, then crutches for 4 weeks, and my cane for 8 weeks. My doctor was worried about me because I had not walked " normal " for so long, he was afraid I would take advantage of it. Also, I have been overweight my whole life and he was afraid of the extra weight on my new hip. I have not tried glucosamine. I never felt like the pain was that great after surgery. Even the arthritis pain I feel now in the other parts of my body doesn't compare to the pain I felt before my THR. I am taking a non-inflammatory medication that does the trick. As far as my back, since I started walking religiously a month ago, my back pain has subsided a little. It goes back the old phrase " Use it or lose it " . I refuse to lose it. I never heard of cutting out certain foods in your diet. I was told by an indian medicine man that 2 shots of apple cidar vinegar a day will cure anything. I can't bring myself to drink it though. I did buy the pill form and have not been sick since I started taking them about 6 months ago. Maybe he knew what he was talking about. I have also read that hot peppers contain chemicals that relieve arthritis pain. I don't have the stomach for that stuff either because of acid reflux. Good luck to all! Dani > Dear Dani, > > Thankyou so much for sharing with us. Oh my--you have been through so > much and at such a young age. What has helped you get through it? I am > sure if I asked your fiancé, your Mom or your friends they could tell > us. > > How frustrating (to put it mildly!) to have the new problems with > arthritis. I'm assuming you've tried glucosamine sulphate? It > certainly seems to work for some people in helping arthritic pain-- was > amazing for my husband, but not so much for me. My cousin who is a vets > uses it on arthritic animals and finds it can help a lot. There have > also been good medical trials. > > Some people also find different diets (usually non-inflammatory foods eg > cutting out acid fruits like oranges and tomatoes) help with > arthritis--but different things seem to work (or not) for different > people, so one needs to experiment. I found trying out different > arthritis diets helped me lose weight at least, which of course, helped > my arthritis. Am not convinced cutting out certain foods helped me > personally. > > I also have arthritis in my back and use Pilates and > Technique. You probably don't have ' Technique' in the States? > I live in England. But I have found that by using my back differently > when sitting, standing and walking, it helps the Arthritis. Just > curious if you have tried any other non-medical things for your back? > Some people find gentle Yoga helpful as well. But all that doesn't help > your knees. > > And finally, it is dreadful about needing 'assistance' or insurance for > operations. It is so good in England having the National Health > Service. Even though we all complain about aspects of it from time to > time, it is invaluable and does such good work. > > Eleanor > > Re: newbie > > > > > Thank you to all of you that gave me such a warm welcome. Some of > you asked for more background on me, so here goes.... > > When I was 12 years old, I dislocated my right hip. It wasn't > something that just suddenly happened. I limped around for a while > and my parents just thought I was doing it to get attention. > Finally, my dad took me to see a bone specialist and we found out the > truth. I had 3 pins put in my hip a week later with the hopes that > it would heal itself. It didn't. Nine months later I was told the > pins had to come out because they were causing other problems. I > eventually developed arthritis which destroyed what was left of my > hip. I was told I would have to have a replacement when I was done > growing. By the time I would have " finished growing " , I was working > a full time plus job in a restaurant, sometimes pulling 12 hour > shifts. I still didn't have enough money to get the surgery I needed > and state assistance was out of the question. I met a wonderful man > in 1999 that said he would take care of me. He watched me day after > day struggling to stand or walk and felt it would be best if I quit > my job. I still worked once in a while on a call in basis for about > a year until the place closed. Immediately, my mom started pushing > me to sign up for state assistance and disability since I was no > longer working. Luckily, I was approved for both. I had my > replacement in January of 2001. I was so scared, but I kept thinking > of the benefits. My fiance' had just bought me a new house and I > couldn't even take care of it or him. I couldn't walk in the grocery > store or anywhere else for that matter. I was told I would be in a > wheelchair by the time I turned 30. The recovery was hard, but worth > it. The pain from the arthritis went away and I felt better than I > had in years. I have recently developed arthritis in my knees, left > hip and lower back. Some days it's unbearable, but then I think > about where I was 4 years ago and just keep pushing. Everybody heals > differently. I wish everyone the best. Thank you for letting me > share. > > Dani > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 Hey all – I’m interested in the anti- arthritis diet? Tomatoes and oranges, you say. What medical proof can you offer? I did read recently that the glucosamine sulfate has been recommended. Cheryl  in Missouri Re: newbie Thank you to all of you that gave me such a warm welcome. Some of you asked for more background on me, so here goes.... When I was 12 years old, I dislocated my right hip. It wasn't something that just suddenly happened. I limped around for a while and my parents just thought I was doing it to get attention. Finally, my dad took me to see a bone specialist and we found out the truth. I had 3 pins put in my hip a week later with the hopes that it would heal itself. It didn't. Nine months later I was told the pins had to come out because they were causing other problems. I eventually developed arthritis which destroyed what was left of my hip. I was told I would have to have a replacement when I was done growing. By the time I would have " finished growing " , I was working a full time plus job in a restaurant, sometimes pulling 12 hour shifts. I still didn't have enough money to get the surgery I needed and state assistance was out of the question. I met a wonderful man in 1999 that said he would take care of me. He watched me day after day struggling to stand or walk and felt it would be best if I quit my job. I still worked once in a while on a call in basis for about a year until the place closed. Immediately, my mom started pushing me to sign up for state assistance and disability since I was no longer working. Luckily, I was approved for both. I had my replacement in January of 2001. I was so scared, but I kept thinking of the benefits. My fiance' had just bought me a new house and I couldn't even take care of it or him. I couldn't walk in the grocery store or anywhere else for that matter. I was told I would be in a wheelchair by the time I turned 30. The recovery was hard, but worth it. The pain from the arthritis went away and I felt better than I had in years. I have recently developed arthritis in my knees, left hip and lower back. Some days it's unbearable, but then I think about where I was 4 years ago and just keep pushing. Everybody heals differently. I wish everyone the best. Thank you for letting me share. Dani Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 It sure did work, Maxine, welcome! Marge Hello All, I sent two messages this afternoon and they haven't shown up. Is there something I'm suppose to do besides join? I DID get this letter from the moderator that said SPAM will not be tolerated, but, I didn't post any spam. Just replied to a couple posts. I'll try this and see if this works. ..... Maxine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 Hi Maxine, I found that out to when I 1st posted messages, they sometimes take awhile to be posted, sometimes if u r lucky it will go straight thru, depending on the times of the day. Mark > > It sure did work, Maxine, welcome! > Marge > > Hello All, > I sent two messages this afternoon and they haven't shown up. > Is there something I'm suppose to do besides join? > I DID get this letter from the moderator that said SPAM will not be tolerated, but, I didn't post any spam. Just replied to a couple posts. > I'll try this and see if this works. ..... Maxine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 It is actually because the group is moderates all newbies on the list. It is a very good thing they do, because we would be flooded with " Arthritis cures " and " Viagra specials " if the list owner didn't do that. It would be good if they set the response up so that a message went to newcomers explaining this. It can be done in the email when they are approved to join the group. It is frustrating at first, but obviously the moderators do read the posts because they approve people and take them off moderation quite quickly. Just be thankful for the spam free discussions on here. It is worth the early frustration. Aussie Margaret Re: Newbie > > > Hi Maxine, > I found that out to when I 1st posted messages, they sometimes take > awhile to be posted, sometimes if u r lucky it will go straight > thru, depending on the times of the day. > Mark > > > > > > > > It sure did work, Maxine, welcome! > > Marge > > > > Hello All, > > I sent two messages this afternoon and they haven't shown up. > > Is there something I'm suppose to do besides join? > > I DID get this letter from the moderator that said SPAM will not > be tolerated, but, I didn't post any spam. Just replied to a couple > posts. > > I'll try this and see if this works. ..... Maxine > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Please remember that might play a part in this. I belong to several boards that don't moderate all messages and the same thing happens on a regular basis. We just chalk it up to our being too chatty. LOL cheers, dave > > > > > > It sure did work, Maxine, welcome! > > > Marge > > > > > > Hello All, > > > I sent two messages this afternoon and they haven't > shown up. > > > Is there something I'm suppose to do besides join? > > > I DID get this letter from the moderator that said SPAM > will not > > be tolerated, but, I didn't post any spam. Just replied > to a couple > > posts. > > > I'll try this and see if this works. ..... Maxine > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2005 Report Share Posted March 31, 2005 Hi The symptoms you describe aren't unusual. Mosst of it is due to the pressure that the ctoma is exerting on all the surrounding structures in the ear. Facial numbness and loss of taste are associated with with the pressure or stretching of the cranial nerve which runs through the ear. Other possible symptoms may be a dull pain in the mastoid area, headaches, possible dizziness and maybe a stiffness in the neck or shoulder. An infected ctomas are more dectructive. You know when a ctoma is infected because it causes a nasty smelling discharge. An infected ctoma doesn't usually respind to antibiotics. I hope you get it sorted soom. Phil Greetings fellow irritated ones, I was recently diagnosed with ctoma in my left ear, but the odd thing was most of my pain was coming from my right ear (which is what prompted the CT Scan that found the ctoma). The right ear had that radical mastoidectomy surgery a few years back and now it seems it takes 10 times longer for an ear infection to go away. I am also experiencing numbness on the right side of my face and tongue as well as the occaisional stabbing pain inside the ear. Anyone else havethese symptoms?The fullness feeling is in both ears and gets on my nerves at times.I cannot get in to see the "c'toma specialist" at the Michigan Ear Institute until April 21 - anyone ever go to the MEI? I've had tubes in my ears about 17 times since I was 6 (I am 41 now) and I pray my children do not have to go through any of the same torture I have endured.My regular ENT gave me a prescription for vicoprofen - warning for those who havent had it before - DO NOT OPERATE anything heavier than the TV remote while on this drug.Thanks in advance for any advice! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2005 Report Share Posted April 1, 2005 Hello , I sympathize with your irritation with regards to this condition. I had a mastoidectomy and tympanoplasty done for ctoma in my left ear in January 2004. Not fun. The surgery itself was a breeze. I mean, how can surgery be bad - you're out like a light! The not-so-fun part was the recovery process. I'm sure everyone is different, but I was told by my ENT that I'd be back to work w/in a few days. Yeah right! I was BED RIDDEN for a week because of dizziness. I do have to say though, once I went back to get the plug removed (a week after surgery), the dizziness pretty much went away immediately - I'm thinking the pressure of the plug in the ear was causing the balance issues. Anyhow - good luck with everything! Culp <jfculp@...> wrote: Greetings fellow irritated ones, I was recently diagnosed with ctoma in my left ear, but the odd thing was most of my pain was coming from my right ear (which is what prompted the CT Scan that found the ctoma). The right ear had that radical mastoidectomy surgery a few years back and now it seems it takes 10 times longer for an ear infection to go away. I am also experiencing numbness on the right side of my face and tongue as well as the occaisional stabbing pain inside the ear. Anyone else havethese symptoms?The fullness feeling is in both ears and gets on my nerves at times.I cannot get in to see the "c'toma specialist" at the Michigan Ear Institute until April 21 - anyone ever go to the MEI? I've had tubes in my ears about 17 times since I was 6 (I am 41 now) and I pray my children do not have to go through any of the same torture I have endured.My regular ENT gave me a prescription for vicoprofen - warning for those who havent had it before - DO NOT OPERATE anything heavier than the TV remote while on this drug.Thanks in advance for any advice! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2005 Report Share Posted April 1, 2005 Thanks for that. I recall the week long rest I had after the mastoidectomy and having to sleep with that annoying round plastic bowl-thingy on my head that resembled an athletic supporting device...thank goodness for vicodin. --- Amy Terry <alterry007@...> wrote: > Hello , > > I sympathize with your irritation with regards to > this condition. I had a mastoidectomy and > tympanoplasty done for ctoma in my left ear in > January 2004. Not fun. The surgery itself was a > breeze. I mean, how can surgery be bad - you're out > like a light! The not-so-fun part was the recovery > process. I'm sure everyone is different, but I was > told by my ENT that I'd be back to work w/in a few > days. Yeah right! I was BED RIDDEN for a week > because of dizziness. I do have to say though, once > I went back to get the plug removed (a week after > surgery), the dizziness pretty much went away > immediately - I'm thinking the pressure of the plug > in the ear was causing the balance issues. > > Anyhow - good luck with everything! > > Culp <jfculp@...> wrote: > > > Greetings fellow irritated ones, > > I was recently diagnosed with ctoma in my left ear, > but the odd thing > was most of my pain was coming from my right ear > (which is what > prompted the CT Scan that found the ctoma). The > right ear had that > radical mastoidectomy surgery a few years back and > now it seems it > takes 10 times longer for an ear infection to go > away. I am also > experiencing numbness on the right side of my face > and tongue as well > as the occaisional stabbing pain inside the ear. > Anyone else have > these > symptoms? > > The fullness feeling is in both ears and gets on my > nerves at times. > > I cannot get in to see the " c'toma specialist " at > the Michigan Ear > Institute until April 21 - anyone ever go to the > MEI? > > I've had tubes in my ears about 17 times since I was > 6 (I am 41 now) > and I pray my children do not have to go through any > of the same > torture I have endured. > > My regular ENT gave me a prescription for vicoprofen > - warning for > those who havent had it before - DO NOT OPERATE > anything heavier than > the TV remote while on this drug. > > Thanks in advance for any advice! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2005 Report Share Posted April 1, 2005 - Yes, the cup for the ear was horrid. I felt like a total weirdo with that thing on my head. The best part was driving home from the hospital and having other motorists looking at me like I was from another planet. That was entertaining. I must say however, I was prescribed Oxy Codone (sp?) and I never took it. I was afraid I'd never wake up! Amy --- Culp <jfculp@...> wrote: > > Thanks for that. I recall the week long rest I had > after the mastoidectomy and having to sleep with > that > annoying round plastic bowl-thingy on my head that > resembled an athletic supporting device...thank > goodness for vicodin. > > --- Amy Terry <alterry007@...> wrote: > > Hello , > > > > I sympathize with your irritation with regards to > > this condition. I had a mastoidectomy and > > tympanoplasty done for ctoma in my left ear in > > January 2004. Not fun. The surgery itself was a > > breeze. I mean, how can surgery be bad - you're > out > > like a light! The not-so-fun part was the > recovery > > process. I'm sure everyone is different, but I > was > > told by my ENT that I'd be back to work w/in a few > > days. Yeah right! I was BED RIDDEN for a week > > because of dizziness. I do have to say though, > once > > I went back to get the plug removed (a week after > > surgery), the dizziness pretty much went away > > immediately - I'm thinking the pressure of the > plug > > in the ear was causing the balance issues. > > > > Anyhow - good luck with everything! > > > > Culp <jfculp@...> wrote: > > > > > > Greetings fellow irritated ones, > > > > I was recently diagnosed with ctoma in my left > ear, > > but the odd thing > > was most of my pain was coming from my right ear > > (which is what > > prompted the CT Scan that found the ctoma). The > > right ear had that > > radical mastoidectomy surgery a few years back and > > now it seems it > > takes 10 times longer for an ear infection to go > > away. I am also > > experiencing numbness on the right side of my face > > and tongue as well > > as the occaisional stabbing pain inside the ear. > > Anyone else have > > these > > symptoms? > > > > The fullness feeling is in both ears and gets on > my > > nerves at times. > > > > I cannot get in to see the " c'toma specialist " at > > the Michigan Ear > > Institute until April 21 - anyone ever go to the > > MEI? > > > > I've had tubes in my ears about 17 times since I > was > > 6 (I am 41 now) > > and I pray my children do not have to go through > any > > of the same > > torture I have endured. > > > > My regular ENT gave me a prescription for > vicoprofen > > - warning for > > those who havent had it before - DO NOT OPERATE > > anything heavier than > > the TV remote while on this drug. > > > > Thanks in advance for any advice! > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2005 Report Share Posted April 3, 2005 It is posts like yours that make me grateful: I have had my share of problems but never as bad as you sound. Occassionally now I still get a full ear feeling. After reconstruction surgery (no.2 is coming up), I had ear pangs. I still do ocasionally get a numb feeling in my face but it doesn't last long. My wife has noticed a mild paralysis, those who know me well notice it but most don't. The biggest annoying thing is the tinnitus which is guaranteed to start at night when my head is on my pillow. Hang in there. For the most part 90 percent of the time, I live normal but for now I am half deaf. --- Culp <jfculp@...> wrote: > > > Greetings fellow irritated ones, > > I was recently diagnosed with ctoma in my left ear, > but the odd thing > was most of my pain was coming from my right ear > (which is what > prompted the CT Scan that found the ctoma). The > right ear had that > radical mastoidectomy surgery a few years back and > now it seems it > takes 10 times longer for an ear infection to go > away. I am also > experiencing numbness on the right side of my face > and tongue as well > as the occaisional stabbing pain inside the ear. > Anyone else have > these > symptoms? > > The fullness feeling is in both ears and gets on my > nerves at times. > > I cannot get in to see the " c'toma specialist " at > the Michigan Ear > Institute until April 21 - anyone ever go to the > MEI? > > I've had tubes in my ears about 17 times since I was > 6 (I am 41 now) > and I pray my children do not have to go through any > of the same > torture I have endured. > > My regular ENT gave me a prescription for vicoprofen > - warning for > those who havent had it before - DO NOT OPERATE > anything heavier than > the TV remote while on this drug. > > Thanks in advance for any advice! > > > > > > > __________________________________ Messenger Show us what our next emoticon should look like. Join the fun. http://www.advision.webevents./emoticontest Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2005 Report Share Posted April 3, 2005 I only had the ear protection cup on my head when I was a kid. Most surgeries since then have been huge gauze bandage which I was allowed to remove in 24 hours. The last surgery I had wasn't too bad for recovery symptoms and time off. I took exactly 14 hours for the anesthesia to wear off. I took one pain pill which I think prolonged the recovery time. I was back to work in 3 days time with 18 staples in my head. --- Amy Terry <alterry007@...> wrote: > - > > Yes, the cup for the ear was horrid. I felt like a > total weirdo with that thing on my head. The best > part was driving home from the hospital and having > other motorists looking at me like I was from > another > planet. That was entertaining. > > I must say however, I was prescribed Oxy Codone > (sp?) > and I never took it. I was afraid I'd never wake > up! > > Amy > --- Culp <jfculp@...> wrote: > > > > Thanks for that. I recall the week long rest I had > > after the mastoidectomy and having to sleep with > > that > > annoying round plastic bowl-thingy on my head that > > resembled an athletic supporting device...thank > > goodness for vicodin. > > > > --- Amy Terry <alterry007@...> wrote: > > > Hello , > > > > > > I sympathize with your irritation with regards > to > > > this condition. I had a mastoidectomy and > > > tympanoplasty done for ctoma in my left ear in > > > January 2004. Not fun. The surgery itself was > a > > > breeze. I mean, how can surgery be bad - you're > > out > > > like a light! The not-so-fun part was the > > recovery > > > process. I'm sure everyone is different, but I > > was > > > told by my ENT that I'd be back to work w/in a > few > > > days. Yeah right! I was BED RIDDEN for a week > > > because of dizziness. I do have to say though, > > once > > > I went back to get the plug removed (a week > after > > > surgery), the dizziness pretty much went away > > > immediately - I'm thinking the pressure of the > > plug > > > in the ear was causing the balance issues. > > > > > > Anyhow - good luck with everything! > > > > > > Culp <jfculp@...> wrote: > > > > > > > > > Greetings fellow irritated ones, > > > > > > I was recently diagnosed with ctoma in my left > > ear, > > > but the odd thing > > > was most of my pain was coming from my right ear > > > (which is what > > > prompted the CT Scan that found the ctoma). The > > > right ear had that > > > radical mastoidectomy surgery a few years back > and > > > now it seems it > > > takes 10 times longer for an ear infection to go > > > away. I am also > > > experiencing numbness on the right side of my > face > > > and tongue as well > > > as the occaisional stabbing pain inside the ear. > > > Anyone else have > > > these > > > symptoms? > > > > > > The fullness feeling is in both ears and gets on > > my > > > nerves at times. > > > > > > I cannot get in to see the " c'toma specialist " > at > > > the Michigan Ear > > > Institute until April 21 - anyone ever go to the > > > MEI? > > > > > > I've had tubes in my ears about 17 times since I > > was > > > 6 (I am 41 now) > > > and I pray my children do not have to go through > > any > > > of the same > > > torture I have endured. > > > > > > My regular ENT gave me a prescription for > > vicoprofen > > > - warning for > > > those who havent had it before - DO NOT OPERATE > > > anything heavier than > > > the TV remote while on this drug. > > > > > > Thanks in advance for any advice! > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2005 Report Share Posted April 3, 2005 Tahnks - but keep in mind that being half deaf comes in handy when it comes to doing that " honey do " list (Just kidding...it's nothing to joke about, but humor helps me cope). Try having a fan or air cleaner on at night - the " white noise " seems to help a few friends of mine with their tinnitis. Take care. --- robert powell <robert_powell82@...> wrote: > It is posts like yours that make me grateful: > > I have had my share of problems but never as > bad > as you sound. Occassionally now I still get a full > ear feeling. After reconstruction surgery (no.2 is > coming up), I had ear pangs. I still do ocasionally > get a numb feeling in my face but it doesn't last > long. My wife has noticed a mild paralysis, those > who > know me well notice it but most don't. The biggest > annoying thing is the tinnitus which is guaranteed > to > start at night when my head is on my pillow. Hang > in > there. For the most part 90 percent of the time, I > live normal but for now I am half deaf. > > > --- Culp <jfculp@...> wrote: > > > > > > Greetings fellow irritated ones, > > > > I was recently diagnosed with ctoma in my left > ear, > > but the odd thing > > was most of my pain was coming from my right ear > > (which is what > > prompted the CT Scan that found the ctoma). The > > right ear had that > > radical mastoidectomy surgery a few years back and > > now it seems it > > takes 10 times longer for an ear infection to go > > away. I am also > > experiencing numbness on the right side of my face > > and tongue as well > > as the occaisional stabbing pain inside the ear. > > Anyone else have > > these > > symptoms? > > > > The fullness feeling is in both ears and gets on > my > > nerves at times. > > > > I cannot get in to see the " c'toma specialist " at > > the Michigan Ear > > Institute until April 21 - anyone ever go to the > > MEI? > > > > I've had tubes in my ears about 17 times since I > was > > 6 (I am 41 now) > > and I pray my children do not have to go through > any > > of the same > > torture I have endured. > > > > My regular ENT gave me a prescription for > vicoprofen > > - warning for > > those who havent had it before - DO NOT OPERATE > > anything heavier than > > the TV remote while on this drug. > > > > Thanks in advance for any advice! > > > > > > > > > > > > > > > > > > __________________________________ > Messenger > Show us what our next emoticon should look like. > Join the fun. > http://www.advision.webevents./emoticontest > __________________________________ Messenger Show us what our next emoticon should look like. Join the fun. http://www.advision.webevents./emoticontest Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2005 Report Share Posted July 8, 2005 Debby, I probably had all those same concerns, I studied this group for one year prior to having the surgery two weeks ago, not because of the concerns but because of my finances, but please if you need to talk, or anyone want to talk, just give me a call, and maybe I can help you with some of your concerns. Tracie B. in Texas 817-441-5211 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2005 Report Share Posted July 8, 2005 You go girl !! You won't regret it. I am one week out today from surgery and doing great. Good Luck to you. -----Original Message-----From: [mailto: ]On Behalf Of Debby B.Sent: Friday, July 08, 2005 2:42 PM Subject: newbie Hi everyone, I have been thinking about having the lap band done but have so many concerns. I'm glad I joined this group though. You all are giving me the courage to get this done by Dr. Aceves. I'll let you all know when my surgery date is. Debby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2005 Report Share Posted July 8, 2005 I am new and just making up my mind. Why did you choose band surgery? I would be very interested to hear from as many as care to share. I think I'm leaning toward Roux-n-Y because of the extra help you get from absorbing less of what you eat. Re: newbie Debby, I probably had all those same concerns, I studied this group for one year prior to having the surgery two weeks ago, not because of the concerns but because of my finances, but please if you need to talk, or anyone want to talk, just give me a call, and maybe I can help you with some of your concerns. Tracie B. in Texas 817-441-5211 Quote Link to comment Share on other sites More sharing options...
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