Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Hello , I had a good visit today with Dr Pensak. I really liked him, he was proffesional and honest with me. He looked in my ear after his resident had came in and done the prelimanary stuff. He was happy to sit down and tell me that my ctoma was a fairly large one and had been growing for many many years going by the size, and the fact that the inner ear was full of it. He gave me the percentages on the three differant types of surgery he seemed confident that everything would be okay and I take comfort in that. He said something about 25% of patients are able to have the c-toma extracted repair work done and any prosthethis put in all in one surgery, 50% of patients have to have it cleaned out and come back 4-6 months later for reconstruction, and that the other 25% have to have the radical. So with all that said he really could not tell me which one mine would be until he got in there. And that's okay because even though I had found out everything he told me on the internet and through this support group, I trust him completely because he wasn't all "let's get in there as fast as we can and tinker around" he knows all the ins and outs and know what to do in each situation. That fellow 5 yrs ago struck me as someone who had never seen the thing before and just wanted to scare the H@#$ out of me so I didn't like him very much, that's awful I know cause everyone has to practice sometime, but I just didn't want him practicing on me. So if you can gleen anything out of what I just told you maybe you can give me some insight to which one he will probably do. I think he really knows which one will probably be needed but he just didn't want to say. My over all experience this far just keeps getting better I seem to be getting in touch with the right people this time so I am just going to stay positive. Thanks again for putting up with my extremely long e-mails and not dropping me when I freaked out the other day and gave you the wrong info. If they would just be a little more specific with me it would help. Thanks again Malerie From: Malerie Ace <malerieace@...>cholesteatoma Sent: Fri, November 20, 2009 5:15:44 PMSubject: Re: New victim Hey , I found out today after calling and getting no call backs that tomarrow is just a visit. Thank goodness! I was a little bit leary of doing surgery that fast so this works out better. I am so glad for the information you gave me I know everybody is differant but you hav alieved a lot of the worries I had. I am so sorry they made you wait so long and then to have all that trouble afterwards and I am kind of worried what they will find once they get in there. Last year my tongue did go numb on the right side and it still is but I just adjusted to it so I don't even notice it anymore. The only thing it really affects is Ice cream (it makes it taste metallic) but that's okay because I am already about 100 pounds over weight so any help in that dept. is okay.LOL! I was just really worried about feeling worse than I do now and that is not very good most of the time. But I have adopted the attitude that it will all be worth it in the end. Thank you for all the encouragement I really do appreciate it you don't know how much. My mother n law said she would probably come and stay when I had it done and I won't be able to hear her so I deffinantly won't mind LOL. Your right it does help to hear about others that have this problem because it is like any other disease unless you have it you can't understand it. And it does help me for you to tell me all that you went through because I am the type of person who likes to know all the angles. So I will write tomarrow and tell you what happened. Thanks for being there and talking to me it means the world to me. From: Sefton <seftonmichelle>cholesteatomaSent: Fri, November 20, 2009 4:43:01 AMSubject: Re: New victim Malerie, Why can't you see Dr. Pensak before surgery? I think I would want to meet him and at least get any questions I had answered. If you do have questions or concerns I would at least call the office and get them answered. I know how you feel. I am 41 years old with three kids, ages 14, 11, and 8. I never had any problems with my ear until about 4 years ago it became "plugged up". I kept going to my family doctor and he kept telling me nothing was wrong. Finally, he referred me to an ENT who told me I had otosclerosis and to come back in a year for another hearing test. To make a long story short, I got a second opinion and he did a CT scan and found the C-toma. So to go from nothing is wrong to suddenly you have something in your ear that requires surgery is quite dishearteneing. I had some time between diagnosis and my actual surgery which in my opinion is almost worse. The less time you have the less time you worry and really the worrying is the hardest part. I had my CT scan in Dec. and surgery wasn't until Aug. I wish I wouldn't have waited so long- I may have had better results in the end. But as far as the surgery itself. Going in my doctor thought he was going to do Canal Wall Up, but once he got in there it was worse than the scan showed. He said it was about the size of my thumb, ate away 1-/2 of my hearing bones and part of the third. It also at away about 8mm of the bone between the ear and brain, exposing part of the Dura of the brain, and he had to peal it off the facial nerve. He ended up doing Canal Wall Down. I am not telling you all of this to scare you. My point is, I had all of this done, outpatient, and it wasn't as bad as I thought. Now I had a slight complication with the prothesis- he thinks he pulled something too tight and caused an inner ear fluid leak because I did have sever dizziness for about a week after surgery. I wasn't able to drive for 2 weeks. It was supposed to be 3 days but mine was a bit longer because of the dizziness. So even the worst case senario, I was down for about two weeks, which I believe is on the long side. I also tired out easily for about 2-3 weeks and I believe that is the anesthesia. Everything I worried about I shouldn't have. The anethesia went well, I didn't even know I had a breathing tube, it wasn't painful. I had pain right after surgery and they gave me percoset. It made me deathly ill so I didn't take any more. I took extra strength Tylenol for about a week if that. I was also on prednisone for the problem with the inner ear fluid leak. And now, 3 months after surgery I am doing great. I went on my first plane trip since surgery and didn't have any pain! I do still have ringing in that ear which I don't think will ever go away. I also have about a 15% hearing loss in that ear which I don't think is that bad. But my ear still feels "plugged up" which I was hoping that feeling would go away. I guess that is just the hearing loss. Also, the area around my ear on my head feels weird.. Not exactly numb but kind of. The incision looks great- I didn't have any outter stitches- just a steri strip that they removed after 2 weeks. I do have a taste disturbance, which is getting better. Right after surgery everything tasted (or I should say didn't taste!) like cardboard. And the right side of my tongue is still slightly numb- but it keeps getting better. I'm probably telling you too much, but it helped me to hear from people who had been through this. I too, was worried about how I would manage with 3 kids after surgery. My husband took off three days and my mom came and stayed with us for a week. Let people help you if you have that opportunity. Concentrate on healing and drink, drink, drink lots of fluids after surgery to flush all that anesthesia out of your system. Also get up and walk around as much as possible!!! If you have any questions feel free to ask. I will be thinking about you and when you are feeling better let us all know how surgery went. Best of luck! From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling... After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2009 Report Share Posted November 22, 2009 Malerie, I'm so glad your visit with Dr. Pensak went well. I have been told he is the best. He told me those same percentages, although I'm not sure what the radical on is?? The first time I saw him he was very matter of fact and answered all of my questions. I had been having popping and ringing in my ear and he said those were not sysmtoms of c-toma so he wanted to do an MRI. So first, I was a little scared because I went from my family dr. saying nothing is wrong, to an ENT saying I had otosclerosis and to come back in a year for another hearing test, to the surgeon saying I needed surgery where they were going to drill into my head and I could come out deaf!! So I was a little upset and just needed a little reasurrance. So I made another appointment with Dr, Pensak to try and get some more answers to my questions. Big mistake! He was very curt and made me cry (when I get mad or upset I cry easily, it's a curse!) I guess I wanted more answers and I realized when I went to another surgeon, that they just don't know until they go in there. I wasn't given any indication by Dr. Pensak what type of surgery he would do, just the percentages he gave you. I will tell you that Dr. Pensak said he thought that he could do Canal Wall Up, and the Dr. who actually performed my surgery (Dr. Lesinski) had to do Canal Wall Down, but he did removal and reconstruction all in one surgery. I'm sure it will all go well, what I read and heard about Dr. Pensak is he is the best. (I just needed a little compassion, which he did not have) Dr. Lesisnki told me he sees alot of Dr. Pensak's patients for that reason. But looking back all that really matters is his skill and ability as a surgeon! Keep in tough and I will pray that this is over quickly for you! Take Care! From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling... After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2009 Report Share Posted November 22, 2009 I cna see what you mean, that first surgeon I went too years ago, was like that with me he was trying to scare me into doing something that I didn't understand at the time. I did exactly as you did at the time and got a second opinion . That dr was older and he was a lot kinder he took my situation into consideration(no insurance) and worked with me. What I didn't understand at the time that I do understand now is that the thing dosen't go away with drops, it will shrink and dry up and play nice for a while but it won't go away. But I did exactly as you did I looked for someone who was a little bit more compasionate because I was scared brainless and that dr in Lexington had me believing I was going to die! I belive a doctor is only as good as he treats his patients I am glad you found the right one. When Dr. Pensak came into the room yesterday he thought he was going to just look at my ear without ever introducing hisself but I disabused him of that notion quickly, I said You Dr Pensak? He said yup. I said My name is Malerie nice to meet you! I am like you and am easy to cry wheni I get mad or upset but I had already made up my mind before I went in that if I didn't like him I would go elsewhere ! Right now I really don't care about his personality though I just want it out. The radical mastoidectomy is where they go in and pretty much take everything out of your ear and I don't think there is any hope for it at that point you have to get it cleaned every year and you have to wear a hearing aid I belive I read that one doctor said he only liked the bone anchored one. They also make your ear hole as big as your thumb so they can see in there better when they clean it. From what I have read and observed on this site as well as others I don't think he will be able to do the canal wall up on me. I kind of got the impression it would be one of the later 2. I just hope I get the middle one even though I don't want to go back I will do whats necissary I guess. He told me that mine was a rather large ctoma and from what I have read even small ones will eat the bones of hearing so I just won't know I guess til it's over. I tell you though they don't tell people enough about these things it is all left to us to find the answers and that just sucks. It takes what 20 minutes to give you examples and review information? You pay for every minute of their time so why can't they take that 20 minutes to do that? I guess what I am getting at is since that first surgeon I decided right then I would not rely on anyone else to tell me about my health if tests show there is something wrong with me I immediatly find resources and look it up I won't ever rely on a single source again so that's why the visit went as it did I had already found out as much information as I could, memorized a good part of it and I just wanted to see if he new anything else that I didn't. Which all that he could tell me was the precentages which was the only thing I hadn't seen thus far. Everything else he told me coincided with what I had found. Thank you for the prayers they are always needed . I have been trying very hard to leave this up to the ultimate healer so pray that I can. Take care, have a wonderful Thanksgiving , and thank you so much for sharing with me. Keep in touch Malerie From: Sefton <seftonmichelle@...>cholesteatoma Sent: Sun, November 22, 2009 6:19:10 AMSubject: Re: New victim Malerie, I'm so glad your visit with Dr. Pensak went well. I have been told he is the best. He told me those same percentages, although I'm not sure what the radical on is?? The first time I saw him he was very matter of fact and answered all of my questions. I had been having popping and ringing in my ear and he said those were not sysmtoms of c-toma so he wanted to do an MRI. So first, I was a little scared because I went from my family dr. saying nothing is wrong, to an ENT saying I had otosclerosis and to come back in a year for another hearing test, to the surgeon saying I needed surgery where they were going to drill into my head and I could come out deaf!! So I was a little upset and just needed a little reasurrance. So I made another appointment with Dr, Pensak to try and get some more answers to my questions. Big mistake! He was very curt and made me cry (when I get mad or upset I cry easily, it's a curse!) I guess I wanted more answers and I realized when I went to another surgeon, that they just don't know until they go in there. I wasn't given any indication by Dr. Pensak what type of surgery he would do, just the percentages he gave you. I will tell you that Dr. Pensak said he thought that he could do Canal Wall Up, and the Dr.. who actually performed my surgery (Dr. Lesinski) had to do Canal Wall Down, but he did removal and reconstruction all in one surgery. I'm sure it will all go well, what I read and heard about Dr. Pensak is he is the best. (I just needed a little compassion, which he did not have) Dr. Lesisnki told me he sees alot of Dr. Pensak's patients for that reason. But looking back all that really matters is his skill and ability as a surgeon! Keep in tough and I will pray that this is over quickly for you! Take Care! From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling... After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Hey, Malerie, Chloe has been doing great up until now. It is 6 months since her last surgery, though, and she has some icky drainage. She's been on antibiotic drops for several days, but not much improvement. I am taking her to the surgeon to day so he can culture the drainage and make sure we are giving her the right medicine. She is thrilled because she adores him--the little stinker! Not panicking yet, but of course don't we all get that little bit of anxiety with a new infection after ctoma!? I think it probably has more to do with the fact that she had the swine flu a few weeks ago which turned into pneumonia, so an ear infection is not out of the realm of normal for that... Hope things went well for you this weekend. We are off the MILs on Wednesday . On 11/22/09, Malerie Ace <malerieace@...> wrote: > I cna see what you mean, that first surgeon I went too years ago, was like > that with me he was trying to scare me into doing something that I didn't > understand at the time. I did exactly as you did at the time and got a > second opinion . That dr was older and he was a lot kinder he took my > situation into consideration(no insurance) and worked with me. What I > didn't understand at the time that I do understand now is that the thing > dosen't go away with drops, it will shrink and dry up and play nice for a > while but it won't go away. But I did exactly as you did I looked for > someone who was a little bit more compasionate because I was scared > brainless and that dr in Lexington had me believing I was going to die! I > belive a doctor is only as good as he treats his patients I am glad you > found the right one. When Dr. Pensak came into the room yesterday he thought > he was going to just look at my ear without ever introducing hisself but I > disabused him of that > notion quickly, I said You Dr Pensak? He said yup. I said My name is > Malerie nice to meet you! I am like you and am easy to cry wheni I get mad > or upset but I had already made up my mind before I went in that if I didn't > like him I would go elsewhere ! Right now I really don't care about his > personality though I just want it out. The radical mastoidectomy is where > they go in and pretty much take everything out of your ear and I don't think > there is any hope for it at that point you have to get it cleaned every year > and you have to wear a hearing aid I belive I read that one doctor said he > only liked the bone anchored one. They also make your ear hole as big as > your thumb so they can see in there better when they clean it. From what I > have read and observed on this site as well as others I don't think he will > be able to do the canal wall up on me. I kind of got the impression it would > be one of the later 2. I just hope I get the middle one even though I > don't want to go back I will do whats necissary I guess. He told me that > mine was a rather large ctoma and from what I have read even small ones will > eat the bones of hearing so I just won't know I guess til it's over. I tell > you though they don't tell people enough about these things it is all left > to us to find the answers and that just sucks. It takes what 20 minutes to > give you examples and review information? You pay for every minute of their > time so why can't they take that 20 minutes to do that? I guess what I am > getting at is since that first surgeon I decided right then I would not rely > on anyone else to tell me about my health if tests show there is something > wrong with me I immediatly find resources and look it up I won't ever rely > on a single source again so that's why the visit went as it did I had > already found out as much information as I could, memorized a good part of > it and I just wanted to see if he new anything else that I didn't. > Which all that he could tell me was the precentages which was the only > thing I hadn't seen thus far. Everything else he told me coincided with what > I had found. Thank you for the prayers they are always needed . I have been > trying very hard to leave this up to the ultimate healer so pray that I can. > Take care, have a wonderful Thanksgiving , and thank you so much for sharing > with me. > Keep in touch Malerie > > > > > ________________________________ > From: Sefton <seftonmichelle@...> > cholesteatoma > Sent: Sun, November 22, 2009 6:19:10 AM > Subject: Re: New victim > > > Malerie, > > I'm so glad your visit with Dr. Pensak went well. I have been told he is > the best. He told me those same percentages, although I'm not sure what the > radical on is?? The first time I saw him he was very matter of fact and > answered all of my questions. I had been having popping and ringing in my > ear and he said those were not sysmtoms of c-toma so he wanted to do an > MRI. So first, I was a little scared because I went from my family dr. > saying nothing is wrong, to an ENT saying I had otosclerosis and to come > back in a year for another hearing test, to the surgeon saying I needed > surgery where they were going to drill into my head and I could come out > deaf!! So I was a little upset and just needed a little reasurrance. So I > made another appointment with Dr, Pensak to try and get some more answers to > my questions. Big mistake! He was very curt and made me cry (when I get > mad or upset I cry easily, it's a curse!)   I guess I wanted more > answers and I realized when I went to another surgeon, that they just don't > know until they go in there. I wasn't given any indication by Dr. Pensak > what type of surgery he would do, just the percentages he gave you. I will > tell you that Dr. Pensak said he thought that he could do Canal Wall Up, and > the Dr. who actually performed my surgery (Dr. Lesinski) had to do Canal > Wall Down, but he did removal and reconstruction all in one surgery. I'm > sure it will all go well, what I read and heard about Dr. Pensak is he is > the best. (I just needed a little compassion, which he did not have) Dr. > Lesisnki told me he sees alot of Dr. Pensak's patients for that reason. But > looking back all that really matters is his skill and ability as a surgeon! > > Keep in tough and I will pray that this is over quickly for you! > Take Care! > > > >>>> >>>> >>>>>From: malerieace <malerieace (DOT) com> >>>>>Subject: New victim >>>>>cholesteatoma >>>>>Date: Tuesday, November 3, 2009, 2:00 PM >>>>> >>>>> >>>>> >>>>>Hello my name is Malerie and I am really glad to know I am not alone out >>>>> there. My storey starts early on I had multiple ear infections as a >>>>> small child one of my earliest memories is waking up in the hospital >>>>> from tubes being put in. It was a big deal in 1981. After having tubes >>>>> 3 times I still had reocurring ear infections and sinusitis all through >>>>> my childhood and teenage years. During my senior year in high >>>>> school(1996- 97) I became extremely ill. I was so dizzy I could not >>>>> walk 5 ft from my sickbed to my bathroom. I had to crawl which I can >>>>> tell you was not just a little bit humbling... After being told several >>>>> times by the doctor I had blisters on my eardrums my mother finally got >>>>> fed up and scheduled me with an ent. I went to this doctor and he told >>>>> me there was nothing wrong with me and to stop taking all the >>>>> antibiotics. I cried all the way home I was trully sick and no one >>>>> believed me. So I sucked it up and went back to school and > constantly fought back sick waves of dizziness. I lived that way through > metting my husband, having my first and second child and working. Until July > of 2005 when we went swimming in the local communityh lake and I came up > with an ear infection that layed me low. I was so sick my throat started > closing up and everything. After my round with really good antibiotics my > Right ear was never the same it would itch and ache I would clean it with a > q-tip and the q-tip would be nothign but solid reddish brown afterwards. I > finally went to a night clinic and that is were I recieved my first > diagnosis of c-toma in the right ear. I was very scared, I had no insurance > and a very poor paying job two children to support and my husband didn't > have a very good paying job either and no insurance. But I trucked on to the > ent anyway and he was a real jerk. He kept pushing surgery without any > thought to how I could even pay for it so I gave up, and did not go back. I > told > a cousin of mine about my situation and she worked for the radiology > department of a hospital and she set my up with the head and neck surgon at > her hospital. He was very kind and patient. He informed me of all I needed > to know about this condition and had a ct ran of my mastoids. When I went > back to see him he told me the c-toma was gone! I was overjoyed! But as the > years went on, I got a better job one with insurance,but the pain in my > right ear never got any better I went through the tough antibiotic drops and > z-packs but nothing ever helped for long stretches. Also my left ear was > starting to fail me.. Finally one day this Oct. I was sitting outside in the > garage with my husband on my left and the family beagle on my right. My > husband said " Boy that dog is snoring to beat all! " I said what are you > talking about I can't hear him snoring. I had to turn and listen intently > with my left ear to even hear him and he was sitting right next to me! My > husband said see! I told you you couldn't hear it thunder! I was very > upset.I kinew my hearing was bad but I did not realize it had gotten this > bad! So I made my appointment with the doc and she felt it was time for me > to go on to the ent since I never saw her when my ears felt normal. The ent > who is great by the way looked at my right ear with his high-powered > microscope and told me the c-toma had eroded some of my bone! I thought it > was gone and now they are telling me it has eaten away at my bones! So that > was last tuesday in which he also told me there was a tiny hole in my left > ear and sent me for a ct scan on thursday. This week I am scheduled for my > audiology on thursday and I have no idea what to expect. I would also like > to know if anyone else has experienced extreme fatigue with this thing? > Since my senior year, I can not get enough sleep. I have been treated for > depression but I still want to sleep all the time. Sometimes I physically > have to > my eyes will become unfocused and my head will just swim I will also get > extremely nausous. Is this part of this condition ? The doctor told me the > c-toma was probably from all the tubes I had had but wouldn't have shown up > sooner if so? I just have no idea what to expect I know they want to do > surgery and that guy is in cincinati OH 2 hours away from me. But other than > that I am just floating in a sea of unknowing. Let me know if anyone has any > info. >>>>> >>>>> >>>> >>> >>> >> >> >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Bless it's little heart! She has had a rough year! Thank goodness it's almost over huh? I hope she enjoys her visit with her first love...LOL and I truly hope everything comes out all right seriously that anxiety is a horriable thing. I will continue to keep her in my prayers and you all have a happy and healthy Thanksgiving. Malerie From: s <thequeen.christine@...>cholesteatoma Sent: Mon, November 23, 2009 4:43:28 AMSubject: Re: New victim Hey, Malerie,Chloe has been doing great up until now. It is 6 months since her lastsurgery, though, and she has some icky drainage. She's been onantibiotic drops for several days, but not much improvement. I amtaking her to the surgeon to day so he can culture the drainage andmake sure we are giving her the right medicine. She is thrilledbecause she adores him--the little stinker! Not panicking yet, but ofcourse don't we all get that little bit of anxiety with a newinfection after ctoma!? I think it probably has more to do with thefact that she had the swine flu a few weeks ago which turned intopneumonia, so an ear infection is not out of the realm of normal forthat....Hope things went well for you this weekend. We are off the MILs on Wednesday .On 11/22/09, Malerie Ace <malerieace (DOT) com> wrote:> I cna see what you mean, that first surgeon I went too years ago, was like> that with me he was trying to scare me into doing something that I didn't> understand at the time. I did exactly as you did at the time and got a> second opinion . That dr was older and he was a lot kinder he took my> situation into consideration( no insurance) and worked with me. What I> didn't understand at the time that I do understand now is that the thing> dosen't go away with drops, it will shrink and dry up and play nice for a> while but it won't go away. But I did exactly as you did I looked for> someone who was a little bit more compasionate because I was scared> brainless and that dr in Lexington had me believing I was going to die! I> belive a doctor is only as good as he treats his patients I am glad you> found the right one. When Dr. Pensak came into the room yesterday he thought> he was going to just look at my ear without ever introducing hisself but I> disabused him of that> notion quickly, I said You Dr Pensak? He said yup. I said My name is> Malerie nice to meet you! I am like you and am easy to cry wheni I get mad> or upset but I had already made up my mind before I went in that if I didn't> like him I would go elsewhere ! Right now I really don't care about his> personality though I just want it out. The radical mastoidectomy is where> they go in and pretty much take everything out of your ear and I don't think> there is any hope for it at that point you have to get it cleaned every year> and you have to wear a hearing aid I belive I read that one doctor said he> only liked the bone anchored one. They also make your ear hole as big as> your thumb so they can see in there better when they clean it. From what I> have read and observed on this site as well as others I don't think he will> be able to do the canal wall up on me. I kind of got the impression it would> be one of the later 2. I just hope I get the middle one even though I> don't want to go back I will do whats necissary I guess. He told me that> mine was a rather large ctoma and from what I have read even small ones will> eat the bones of hearing so I just won't know I guess til it's over. I tell> you though they don't tell people enough about these things it is all left> to us to find the answers and that just sucks. It takes what 20 minutes to> give you examples and review information? You pay for every minute of their> time so why can't they take that 20 minutes to do that? I guess what I am> getting at is since that first surgeon I decided right then I would not rely> on anyone else to tell me about my health if tests show there is something> wrong with me I immediatly find resources and look it up I won't ever rely> on a single source again so that's why the visit went as it did I had> already found out as much information as I could, memorized a good part of> it and I just wanted to see if he new anything else that I didn't.> Which all that he could tell me was the precentages which was the only> thing I hadn't seen thus far. Everything else he told me coincided with what> I had found. Thank you for the prayers they are always needed . I have been> trying very hard to leave this up to the ultimate healer so pray that I can.> Take care, have a wonderful Thanksgiving , and thank you so much for sharing> with me.> Keep in touch Malerie>>>>> ____________ _________ _________ __> From: Sefton <seftonmichelle>> cholesteatoma> Sent: Sun, November 22, 2009 6:19:10 AM> Subject: Re: New victim>>> Malerie,>> I'm so glad your visit with Dr. Pensak went well. I have been told he is> the best. He told me those same percentages, although I'm not sure what the> radical on is?? The first time I saw him he was very matter of fact and> answered all of my questions. I had been having popping and ringing in my> ear and he said those were not sysmtoms of c-toma so he wanted to do an> MRI. So first, I was a little scared because I went from my family dr.> saying nothing is wrong, to an ENT saying I had otosclerosis and to come> back in a year for another hearing test, to the surgeon saying I needed> surgery where they were going to drill into my head and I could come out> deaf!! So I was a little upset and just needed a little reasurrance. So I> made another appointment with Dr, Pensak to try and get some more answers to> my questions. Big mistake! He was very curt and made me cry (when I get> mad or upset I cry easily, it's a curse!) I guess I wanted more> answers and I realized when I went to another surgeon, that they just don't> know until they go in there. I wasn't given any indication by Dr. Pensak> what type of surgery he would do, just the percentages he gave you. I will> tell you that Dr. Pensak said he thought that he could do Canal Wall Up, and> the Dr. who actually performed my surgery (Dr. Lesinski) had to do Canal> Wall Down, but he did removal and reconstruction all in one surgery. I'm> sure it will all go well, what I read and heard about Dr. Pensak is he is> the best. (I just needed a little compassion, which he did not have) Dr.> Lesisnki told me he sees alot of Dr. Pensak's patients for that reason. But> looking back all that really matters is his skill and ability as a surgeon!>> Keep in tough and I will pray that this is over quickly for you!> Take Care!> >> >>>>>>>>>>>>>From: malerieace <malerieace@ . com>>>>>>Subject: New victim>>>>>cholesteatoma>>>>>Date: Tuesday, November 3, 2009, 2:00 PM>>>>>>>>>>>>>>>>>>>>Hello my name is Malerie and I am really glad to know I am not alone out>>>>> there. My storey starts early on I had multiple ear infections as a>>>>> small child one of my earliest memories is waking up in the hospital>>>>> from tubes being put in. It was a big deal in 1981. After having tubes>>>>> 3 times I still had reocurring ear infections and sinusitis all through>>>>> my childhood and teenage years. During my senior year in high>>>>> school(1996- 97) I became extremely ill. I was so dizzy I could not>>>>> walk 5 ft from my sickbed to my bathroom. I had to crawl which I can>>>>> tell you was not just a little bit humbling... After being told several>>>>> times by the doctor I had blisters on my eardrums my mother finally got>>>>> fed up and scheduled me with an ent. I went to this doctor and he told>>>>> me there was nothing wrong with me and to stop taking all the>>>>> antibiotics. I cried all the way home I was trully sick and no one>>>>> believed me. So I sucked it up and went back to school and> constantly fought back sick waves of dizziness. I lived that way through> metting my husband, having my first and second child and working. Until July> of 2005 when we went swimming in the local communityh lake and I came up> with an ear infection that layed me low. I was so sick my throat started> closing up and everything. After my round with really good antibiotics my> Right ear was never the same it would itch and ache I would clean it with a> q-tip and the q-tip would be nothign but solid reddish brown afterwards. I> finally went to a night clinic and that is were I recieved my first> diagnosis of c-toma in the right ear. I was very scared, I had no insurance> and a very poor paying job two children to support and my husband didn't> have a very good paying job either and no insurance. But I trucked on to the> ent anyway and he was a real jerk. He kept pushing surgery without any> thought to how I could even pay for it so I gave up, and did not go back. I> told> a cousin of mine about my situation and she worked for the radiology> department of a hospital and she set my up with the head and neck surgon at> her hospital. He was very kind and patient. He informed me of all I needed> to know about this condition and had a ct ran of my mastoids. When I went> back to see him he told me the c-toma was gone! I was overjoyed! But as the> years went on, I got a better job one with insurance,but the pain in my> right ear never got any better I went through the tough antibiotic drops and> z-packs but nothing ever helped for long stretches. Also my left ear was> starting to fail me.. Finally one day this Oct. I was sitting outside in the> garage with my husband on my left and the family beagle on my right. My> husband said "Boy that dog is snoring to beat all!" I said what are you> talking about I can't hear him snoring. I had to turn and listen intently> with my left ear to even hear him and he was sitting right next to me! My> husband said see! I told you you couldn't hear it thunder! I was very> upset.I kinew my hearing was bad but I did not realize it had gotten this> bad! So I made my appointment with the doc and she felt it was time for me> to go on to the ent since I never saw her when my ears felt normal. The ent> who is great by the way looked at my right ear with his high-powered> microscope and told me the c-toma had eroded some of my bone! I thought it> was gone and now they are telling me it has eaten away at my bones! So that> was last tuesday in which he also told me there was a tiny hole in my left> ear and sent me for a ct scan on thursday. This week I am scheduled for my> audiology on thursday and I have no idea what to expect. I would also like> to know if anyone else has experienced extreme fatigue with this thing?> Since my senior year, I can not get enough sleep. I have been treated for> depression but I still want to sleep all the time. Sometimes I physically> have to> my eyes will become unfocused and my head will just swim I will also get> extremely nausous. Is this part of this condition ? The doctor told me the> c-toma was probably from all the tubes I had had but wouldn't have shown up> sooner if so? I just have no idea what to expect I know they want to do> surgery and that guy is in cincinati OH 2 hours away from me. But other than> that I am just floating in a sea of unknowing. Let me know if anyone has any> info.>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> Quote Link to comment Share on other sites More sharing options...
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