Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Carolann, I would go back on the Tapazole and I would drop out of college for now. I would then look at your diet, eat simple foods more veggies, whole grains and I would stay away from white flour, fish, tea etc. anything with iodine or caffeine. I would go to a counselor to deal with the insecurities and stress that seems to be controlling you and keep a cool head so you are not pressured into RAI. I was told the same thing in 1997, and I am now still in remission. I am not working and eating much better too and yes, seeing a counselor at least once a month. Sheri Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Carolann wrote: >Hi Everyone, > >I was wondering if someone could help me. I was diagnosed with >Graves almost >two years ago. Hi Carolann, Why is your doctor forcing you to have surgery or RAI? Since you responded well to ATD's, there's no reason not to use them again. It's not your fault that he took you off of them before you were ready. Read the archives here and on onelist and Dr. Stoll's board. The only people I know who had to drop out of college or quit teaching college because of GD were people who had RAI. I had RAI 10 years ago and consider it the stupidest thing I've ever done. The problems I've had from RAI and hypothyroidism are far greater than any symptoms Graves' disease ever caused. Don't let your doctor bully you into destroying your thyroid when it is the victim not the cause of the disease. Graves' disease is an autoimmune disorder that attacks the thyroid, skin and eyes. If you take the thyroid away, the autoantibodies focus on the skin and eyes. When its finished with them, your immune system eventually finds another target, and you end up with another autoimmune disease. Look to the nutrient deficiences and stress disorders which are at the root of the problem, and you'll calm your immune system, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Carolann, I 'm sure your doc has your best interests at heart, but wonder why he won't do tapozol again or try another ATD drug. I'm on propthyroruicel (PTU) and was on Lopressor when first diagnosed on 2/14. My antithyroid antibody blood work came back at 267 and 123 respectively, normal is supposed to be <60. I had new blood work done recently and my levels were within normal range and my meds were decreased or in the case of Lopressor discountinued. I'd ask him about other alternatives. But then this may be the course you need to take. I wish you LOADS of LUCK and will keep you in my thoughts. Lynn please help me Hi Everyone, I was wondering if someone could help me. I was diagnosed with Graves almost two years ago. I went on tapozol and did the normal routine of medication then went into remission for about three months. I just went for a blood test last week and as I knew by the way I felt, I have lapsed out of remission now as my levels are high once again. They were like 15 as compared to 18 when I was first diagnosed. I am very sad and upset needless to say because now I am forced to make a decision between RAI or surgery. The doctor call me tonight around 10:30 to tell me the bad news and told me that I have to get a thyroid scan in the following week. I am really upset and can't seem to make a decision between the two options I have. Can someone please advise me? I know you can't tell me what to do but I would appreciate any help here. I can't seem to think clearly and am too upset to decide. The doctor wants me to do RAI as soon as possible. I am enrolled in college full time and I pray that I will not have to drop out or anything. Again, any advise will be greatly appreciated. Thanking you all in advance. Carolann ------------------------------------------------------------------------ LOW RATE, NO WAIT! Get a NextCard Visa, in 30 seconds! Get rates as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. Learn more at: 1/937/7/_/6563/_/954305344/ -- Create a poll/survey for your group! -- vote?listname=hyperthyroidism & m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 I second Sheri Lynn's comments. Lynn Re: please help me Carolann, I would go back on the Tapazole and I would drop out of college for now. I would then look at your diet, eat simple foods more veggies, whole grains and I would stay away from white flour, fish, tea etc. anything with iodine or caffeine. I would go to a counselor to deal with the insecurities and stress that seems to be controlling you and keep a cool head so you are not pressured into RAI. I was told the same thing in 1997, and I am now still in remission. I am not working and eating much better too and yes, seeing a counselor at least once a month. Sheri Lynn ------------------------------------------------------------------------ Get a NextCard Visa, in 30 seconds! 1. Fill in the brief application 2. Receive approval decision within 30 seconds 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR Apply NOW! 1/2646/7/_/6563/_/954309593/ -- 20 megs of disk space in your group's Document Vault -- docvault/hyperthyroidism/?m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Dear Carol Ann, If you go back on the Tapezol, and maybe take some Atenol, I don't see why you would have to take a leave of absence at all from school. I was able to keep working, and functioned fine on these meds until I got better, and I think lots of other people work, go to school, keep going in their lives on these meds. I used acupuncture, diet (lots of tofu and broccoli) and some supplements to get well while I was on the meds. If you get 's supplement list (and maybe find someone who knows acupuncture/Chinese medicine), I'm sure you can get well too. Good luck, AntJoan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Hi everyone. After reading all of your wonderful emails I decided to call my doctor and ask him if I can go back on tapazol and explained why to him. He agreed and I feel soooo much better now because I can look into the supplements and other alternatives now. At least with tapazole I can start to feel somewhat normal and good again as I feel absolutely horrible now. He also put me on atenolol which helps. I want to thank each and everyone of you who emailed me and gave me such wise and helpful advice. I appreciate it more than you could possible know. I only hope that someday I can be of such help to one of you if you should ever need it. I am going to be a faithful reader of your emails now and look into 's supplements and I know that they will help me as well. This is a tough disease and I guess we all have to hang tough. Thanks again so very much. Talk to all soon Carolann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Carolann, congrads on taking control of your health and well-being. It appears that your doc actually listened to you, now isn't that amazing. Another suggestion if you have emotional stuff coming up would be to seek out a counselor that would be willing to get info on GD or have knowledge of it. CONGRADS and GOOD LUCK!!! Lynn Re: please help me Hi everyone. After reading all of your wonderful emails I decided to call my doctor and ask him if I can go back on tapazol and explained why to him. He agreed and I feel soooo much better now because I can look into the supplements and other alternatives now. At least with tapazole I can start to feel somewhat normal and good again as I feel absolutely horrible now. He also put me on atenolol which helps. I want to thank each and everyone of you who emailed me and gave me such wise and helpful advice. I appreciate it more than you could possible know. I only hope that someday I can be of such help to one of you if you should ever need it. I am going to be a faithful reader of your emails now and look into 's supplements and I know that they will help me as well. This is a tough disease and I guess we all have to hang tough. Thanks again so very much. Talk to all soon Carolann ------------------------------------------------------------------------ PERFORM CPR ON YOUR APR! Get a NextCard Visa, in 30 seconds! Get rates as low as 0.0% Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! 1/2121/7/_/6563/_/954364194/ -- Create a poll/survey for your group! -- vote?listname=hyperthyroidism & m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Thanks Lynn, that is just what am going to do. I realize the importance in making sure that one's mental health is in check as well. And as for reading more about Graves, that is just what I am doing as well. Again, thanks so much for you concern. It made a huge difference! I hope you are well and my thoughts are with you as well. Carolann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 CarolAnn, Sounds like you have put the brakes on. I cancelled my RAI also, and am so glad I did. Don't quit school. Maybe you could take the summer off and devote it to healing and look at what has helped to create this problem. I am still doing acupunture and the supps and Chinese herbs my DOM gave me. It is slow. My pulses are becoming more balanced and it has been two months. It just takes longer. I also am on bloodpressure and pulse meds. I am not getting better fast, but I am not getting worse. That is the good part. I am also doing some therapy to work on it emotionally. Hang in there. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Dear Carol Ann, I agree. Don't quit school. You can take a leave of absence for the summer or fall, like I had to do before finding this email group which probably saved my life. j in vt. +====>>>>>>=====>>>>>>>>........<<<<<<<<<=======<<<<<<<<==========+ " Truth is a shining goddess, always veiled, always distant, never wholly approachable, but worthy of all the devotion of which the human spirit is capable. " Bertrand +====>>>>>>=====>>>>>>>>........<<<<<<<<<=======<<<<<<<<==========+ On Wed, 29 Mar 2000, Deborah White wrote: > CarolAnn, > Sounds like you have put the brakes on. I cancelled my RAI also, and am > so glad I did. Don't quit school. Maybe you could take the summer off > and devote it to healing and look at what has helped to create this > problem. > > I am still doing acupunture and the supps and Chinese herbs my DOM gave > me. It is slow. My pulses are becoming more balanced and it has been two > months. It just takes longer. I also am on bloodpressure and pulse meds. > I am not getting better fast, but I am not getting worse. That is the > good part. I am also doing some therapy to work on it emotionally. > > Hang in there. > > Deb > > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2121/7/_/6563/_/954366511/ > > -- Easily schedule meetings and events using the group calendar! > -- cal?listname=hyperthyroidism & m=1 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Carolann: Besides all of the other thoughts that people have sent in regarding your situation, I need to add one more. Why another thyroid scan, if you have already been diagnosed with Graves? I would maybe have another antibody (blood) test, but I don't think I would go for another expensive scan! Carolann wrote: Hi Everyone, I was wondering if someone could help me. I was diagnosed with Graves almost two years ago. I went on tapozol and did the normal routine of medication then went into remission for about three months. I just went for a blood test last week and as I knew by the way I felt, I have lapsed out of remission now as my levels are high once again. They were like 15 as compared to 18 when I was first diagnosed. I am very sad and upset needless to say because now I am forced to make a decision between RAI or surgery. The doctor call me tonight around 10:30 to tell me the bad news and told me that I have to get a thyroid scan in the following week. I am really upset and can't seem to make a decision between the two options I have. Can someone please advise me? I know you can't tell me what to do but I would appreciate any help here. I can't seem to think clearly and am too upset to decide. The doctor wants me to do RAI as soon as possible. I am enrolled in college full time and I pray that I will not have to drop out or anything. Again, any advise will be greatly appreciated. Thanking you all in advance. Carolann ------------------------------------------------------------------------ LOW RATE, NO WAIT! Get a NextCard Visa, in 30 seconds! Get rates as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. Learn more at: 1/937/7/_/6563/_/954305344/ -- Create a poll/survey for your group! -- vote?listname=hyperthyroidism & m=1 ------------------------------------------------------------------------ Name: winmail.dat winmail.dat Type: application/ms-tnef Encoding: base64 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 Hi , I believe he wanted the scan so he would be able to tell how much RAI he would need to administer. He canceled that today as I am not taking the RAI. I agree with you on that one. I am just so happy that I don't have to be put through the nightmare of RAI and I never will. It may be for some but not for me. I feel stupid but when I asked what my blood levels were he said they were at 15 and I have no idea what that means....I will find out though. I think I was just too upset to care at that point. I have to read up on this stuff and fast! Thanks Carolann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 CarolAnn, I would not quit school. It helps to have a normal routine. I would research the RAI as well as the herb routes. I opted for RAI but, I am older than you (42 yrs ). It was a slow recovery but, now I feel pretty good. This is a horrible disease and at times you will swear it will never end. I urge you to hang in there. A good book is The Thyroid Solution by Dr. Arem Ridha. He explores many options and discussed both hyper and hypo. This is a serious decision. I would NOT have the surgery. It is my personal belief that everyone will be healthier without the knife in you. I don't want to sway you in any direction. This is your personal decision. You must do what you think is best. If you like, you can email me at temk@.... I am a good listener and I have been right where you are. I wish you the very best, please help me >Hi Everyone, > >I was wondering if someone could help me. I was diagnosed with Graves almost >two years ago. I went on tapozol and did the normal routine of medication >then went into remission for about three months. I just went for a blood >test last week and as I knew by the way I felt, I have lapsed out of >remission now as my levels are high once again. They were like 15 as >compared to 18 when I was first diagnosed. I am very sad and upset needless >to say because now I am forced to make a decision between RAI or surgery. >The doctor call me tonight around 10:30 to tell me the bad news and told me >that I have to get a thyroid scan in the following week. I am really upset >and can't seem to make a decision between the two options I have. Can >someone please advise me? I know you can't tell me what to do but I would >appreciate any help here. I can't seem to think clearly and am too upset to >decide. The doctor wants me to do RAI as soon as possible. I am enrolled in >college full time and I pray that I will not have to drop out or anything. >Again, any advise will be greatly appreciated. Thanking you all in advance. > >Carolann > > >------------------------------------------------------------------------ >LOW RATE, NO WAIT! >Get a NextCard Visa, in 30 seconds! Get rates >as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. >Learn more at: >1/937/7/_/6563/_/954305344/ > >-- Create a poll/survey for your group! >-- vote?listname=hyperthyroidism & m=1 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 Dear AntJoan, I want to thank you so much for your email and concern. Your advice is absolutely on the money and realize now that I will not let this disease get the best of me. It means so much to hear others share their stories and inspiration. School means too much to me to ever let that go. Graves gets the best of me at times and see how important it is to me to not let that happen. Thanks again so much. Carolann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 Dear Carolann, After I started 's supplement list, I saw many people talk about their test results, althought I never heard anyone just give a number as you did. Do...I started asking my endo for copies of my blood reports, or any others for that matter.You paid for them and your are within your rights to have them. You don't have to justify your wanting them either. Since then, with the help of this board, I'm learning more about this disease than I ever thought I could as its pretty tricky. One other thing, don't expect quick results with anything you take for GD. I've been on the supplements for about 3 mos. and think my reduced tapazole just may be due to them rather than the drug which I've been steadily reducing down to 5mg.. Like you, my first go round responded to 10mg. daily tapazole and quickly put me into hypo. I hung around there for more than a year till this second bout which seemed it didn't want to respond to tapazole (60mg.) for months. It was terrible. Stick with the board and don't let them rush you into anything. You can put your test results on the board and somebody will tell you what they mean. Look in the archives and make hard copies of anything that educates you. Peace and Light. ' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 AntJoan, had thought about acupuncture to help treat. Will now call one in my area. Have had it done before and found it relaxing. Lynn Re: please help me Dear Carol Ann, If you go back on the Tapezol, and maybe take some Atenol, I don't see why you would have to take a leave of absence at all from school. I was able to keep working, and functioned fine on these meds until I got better, and I think lots of other people work, go to school, keep going in their lives on these meds. I used acupuncture, diet (lots of tofu and broccoli) and some supplements to get well while I was on the meds. If you get 's supplement list (and maybe find someone who knows acupuncture/Chinese medicine), I'm sure you can get well too. Good luck, AntJoan ------------------------------------------------------------------------ Get a NextCard Visa, in 30 seconds! 1. Fill in the brief application 2. Receive approval decision within 30 seconds 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR Apply NOW! 1/975/7/_/6563/_/954379178/ -- Talk to your group with your own voice! -- VoiceChatPage?listName=hyperthyroidism & m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 Dear Down-hearted, I just wanted to let you know that there is hope. If you are reading about OCD you are on the way to helping your son. What are you reading? The first book I read was The Boy Who Couldn't Stop Washing. It was truly a frightening book, knowing our son had this illness,I was terrified. Today there are many good books out there with lots of hope and ways to help, not enable the OCD sufferer. Tamar Chansky's book is excellent. Aureen Wagner-Pinto's book is too. One that was helpful also is Dr. Herb Gravitz book about OCD and New Help for the Family. The one that is a treatment protocol is March and Mulle's book Ocd treatment in Children and Adolesents. It can give good solid cues to how your child's therapist is doing the right thing, or not. If you go to the COFoundation Web Site, you can find these books in their on-line store. Looking at your situation, with your son young, and two concerned parents, you can certainly show him how to lick this thing!! What type of OCD symptomsis he suffering from? Let us know how we can help. I found this site after finding NO ONE who understood what we were going through. We bought a computer so I could go online to find out about this. Boy did I strike GOLD. THis group has been there for me when I was feeling just like you are now. Vivian in WA ST who has a 17 y/o diagnosed at 12 with OCD (contamination, just so issues, controlling behaviors...etc.) and depression who has been hanging in there for a LONG time! It can get better...education is the key. Please tell us more about yourselves. > My just-turned 6 year old boy has just been diagnosed. He is > suffering and I and his father are so sad and down-hearted. We've > had him to a psychiatrist and he put him on a low dose of zoloft and > has prescribed exposure therapy. - It is so strange and sad to see me > son be " sick " . I am reading every book I could find and it just > makes me sadder to read. We realized there was really a prblem maybe > two weeks ago, but mild symptoms have been there perhaps before the > age of 2, though there's no way we could have recognized them as > anything other than developemental. I am so sad. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2001 Report Share Posted August 1, 2001 Hi! My name is Terry and I also have a just-turned-six year old boy who was diagnosed with OCD. He also is on Zoloft with some moderate success. I just joined this list a few days ago - you're in the right place! What you wrote is exactly the place I was in 3 weeks ago as we finally began to realize the torment that was going on in Ben's mind. It IS heartbreaking...but I am finding that knowledge is power and - the rude awakening - is painful. I , like Vivian (Ruth?) also read The Boy Who Couldn't Stop Washing first and was devastated...but it also gave me a very good glimpse through the window of Ben's new world and has empowered me with compassion and understanding - something I definitely did NOT have before! Tamar Chansky's book is what I am now reading and it has lifted me out of the gutter of despair and has given me tools to help him as well as very practical advice on how to help him on a day to day basis - something his counselor wasn't able to help with. The way that formerly seemed so muddled is clearing....now I see the right " road " that we need to be on for therapy etc....only we just took the wrong exit and don't know how, yet, to get back on track - but at least, we now know where we want to be.....and that's a huge step. This list is proving to be a great sounding board for me already, full of sound advice from those who have (and still are) in the trenches. As I mentioned in an earlier post....I have begun to sleep well again...in part because of this list. Hang in there! I'm afraid I can't draw too much on my own experiences for you - but others here can - I'm only one tiny step ahead, but maybe we can muck through this together. Terry (from upstate NY) > My just-turned 6 year old boy has just been diagnosed. He is > suffering and I and his father are so sad and down-hearted. We've > had him to a psychiatrist and he put him on a low dose of zoloft and > has prescribed exposure therapy. - It is so strange and sad to see me > son be " sick " . I am reading every book I could find and it just > makes me sadder to read. We realized there was really a prblem maybe > two weeks ago, but mild symptoms have been there perhaps before the > age of 2, though there's no way we could have recognized them as > anything other than developemental. I am so sad. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2001 Report Share Posted August 1, 2001 Welcome! I am sorry that your son and family have now to deal with OCD. It is hard to accept, so don't feel badly about your reaction. We all are currently or have been in your shoes. There is a loss of normal childhood that warrents mourning. On the " up " side, though, you now have a diagnosis fairly early on and are beginning the road back to recovery. Your son is lucky to have you because you are seeking as much knowledge and treatment as possible. It will be very easy for you and your husband to get caught up in the OCD rituals and behaviors as you seek to support your child. However, as this group has taught me, that is a trap which ultimately will strengthen OCD. As you have probably read in books and in posts here, finding a point inwhich you are supporting your child, but not OCD, is very important. This group has been a God-send to me, and I hope you feel the same support that will empower you to help your child fight OCD. Write and tell us more about your situation. We understand and care. Melinda S. Dallas > My just-turned 6 year old boy has just been diagnosed. He is > suffering and I and his father are so sad and down-hearted. We've > had him to a psychiatrist and he put him on a low dose of zoloft and > has prescribed exposure therapy. - It is so strange and sad to see me > son be " sick " . I am reading every book I could find and it just > makes me sadder to read. We realized there was really a prblem maybe > two weeks ago, but mild symptoms have been there perhaps before the > age of 2, though there's no way we could have recognized them as > anything other than developemental. I am so sad. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2001 Report Share Posted August 1, 2001 Hello mezzoprano, and welcome to the list. My daughter also had an abrupt onset of severe OCD, at age four, and I will never forget the bewilderment, grief and hopeless feelings of that time following her onset. Watching my daughter suffer--she did compulsions and had gory, gruesome obsessions constantly throughout the day--was the hardest thing I've ever been through. You and your young son are on the right course. SSRIs such as Zoloft and exposure therapy are the two proved and effective treatments for OCD. Usually Zoloft is prescribed at a higher dose for OCD, the lower doses treat depression. I know you are not feeling fortunate right now, but so many other kids suffered for years before receiving an accurate diagnosis and effective treatment, and your son is being spared that misery. Rounding up on three years post-onset, my daughter is doing very well. Her OCD is at a low level and manageable, and she is a champion at bossing back when OCD tries to interfere. She is bright, outgoing and happy, all things I could not even imagine for her back in the " dark days " following her onset. (((hugs))) and keep posting. All of us have been through what you are going through now--the sadness and grief that comes with this type of a diagnosis--but also have since discovered that OCD can be treated and tamed. Everyone here can certainly understand what you and your family are going through at this time. Take care, Kathy R. in Indiana ----- Original Message ----- From: <mezzoprano@...> > My just-turned 6 year old boy has just been diagnosed. He is > suffering and I and his father are so sad and down-hearted. We've > had him to a psychiatrist and he put him on a low dose of zoloft and > has prescribed exposure therapy. - It is so strange and sad to see me > son be " sick " . I am reading every book I could find and it just > makes me sadder to read. We realized there was really a prblem maybe > two weeks ago, but mild symptoms have been there perhaps before the > age of 2, though there's no way we could have recognized them as > anything other than developemental. I am so sad. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2003 Report Share Posted July 17, 2003 Hi Ingrid, I think you are correct in seeking another doctor -- this one doesn't sound like somebody who is very adept in handling your questions, and that would make me very nervous! Some of those questions should not have been that difficult to answer. I suspect you will get some very detailed answers to your questions from some of the others in this group who know c-toma inside and out ... so I will leave that to them. I have been reading your posts and just wanted to say that I am so sorry you are having such a difficult time and will be keeping you in my thoughts and prayers. I do hope that your pain is alleviated soon and that things start to look up quickly. How soon will you be seeking a second opinion? Take Care, Dianne Ingrid Jannetta <ing@...> wrote: Yesterday was a week after my surgery and I went back to see my Dr. I am getting a second opinion from another doctor, but need to share this. I asked my Dr the following questions and His answers follow: How big was the C-Toma? 4.25.MM Where was the C-Toma located? Behind the eardrum. How come the surgery was supposed to be from inside my ear and I now have a 1 1/2 inch incision with 6 stitches about my ear? The ear was worse than expected. Did you get all of the C-Toma? From what I could see through the Microscope I did. Will it come back? Don't Know How come I have been able to hear in my left ear since February with no bones in my ear? I was amazed that you were able to and could not explain it. Was the C-Toma somehow involved with my being able to hear? No it was the cartilage that I used as a graft for the Stapes bone area after the Stapedectomy. Will I be able to have the reconstructive surgery now that you have removed the C-Toma? His answer was to just shake his head like he didn't know I told him that I am in alot of pain at night and I cannot get the throbbing to stop. I end up taking 2 Lotab 5/500 at 8:00pm, 12:00am and 4:00am each night. I only sleep about 1 1/2 hours at a time and that is usually about an hour after I take the Lortab. During the day I can deal with it and it is not as bad. The area that throbs is about a 3 inch diameter circle around my ear. I usually have a high tolerance for pain, but this throbbing is driving me crazy!!! This has been going on for a week. The Dr said that I am at the point where the pain should be going away. That's just fine, but mine is not. He did not address it any further I am seeing another Dr next week for another opinion. I gave up asking anymore questions and decided that this was my last visit to this doctor. Can anyone decipher the information above? I am so thankful I joined this group, I would still be totally clueless if I hadn't. Sincerely, Ingrid Jannetta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2003 Report Share Posted July 17, 2003 At 07:39 AM 7/17/2003 -0700, Dianne McAllister wrote: >Hi Ingrid, > >I think you are correct in seeking another doctor -- this one doesn't >sound like somebody who is very adept in handling your questions, and that >would make me very nervous! Some of those questions should not have been >that difficult to answer. I suspect you will get some very detailed >answers to your questions from some of the others in this group who know >c-toma inside and out ... so I will leave that to them. I have been >reading your posts and just wanted to say that I am so sorry you are >having such a difficult time and will be keeping you in my thoughts and >prayers. I do hope that your pain is alleviated soon and that things >start to look up quickly. How soon will you be seeking a second opinion? First, let me stress that I am new to this group and looking forward (??) to my surgery in two weeks. Having had no symptoms, I feel somewhat distant from the problems raised here; at 64, I feel very much an outsider. Still, I've spent enough time in physicians' offices to have some thoughts to offer. Seeking a second opinion after the surgery may not be as useful as one might hope. Notoriously, information about the growth is visible only when the ear is open. The other doctor may have a report from the first, but that is hardly comparable with the microscopic view. In addition, one must make allowance for the fact that surgeons are notoriously poor communicators. Many of them are pleased that their patients are incommunicado while being treated. I am assured by those I trust that my surgeon (Dr. s of UCLA) is outstanding. However, while he is a very pleasant fellow in the office, he is an abominable communicator. Perhaps to " protect " me, he did not give me the diagnosis; a few days after we looked at the CT scan, his office called to schedule surgery, assuming that since he felt it was appropriate, I would simply charge ahead with it. After getting the diagnosis from my primary care physician, checking it out with various sources, and realizing that there is no alternative, I did schedule surgery - but no thanks to the surgeon. I suggest that Ingrid begin her search for help with her primary care physician, not with another otologist or otolaryngologist. Your regular doctor knows you, how you rate your discomfort, how you heal and, perhaps most importantly, how to communicate with you. She can also properly get your records and ask your surgeon questions which might be resented from another surgeon. In short, your regular doctor may not be expert in ctoma, but she should be expert in communication which is more important for your well-being now. And if she feels you should see another specialist, she will be able to smooth the way. Mike mrichter@... http://www.mrichter.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2003 Report Share Posted July 17, 2003 Hi Mike, That is actually a very good point!!! Didn't really think that through all the way ... but Ingrid's primary care physician probably is the best place to start. I wish you well on your upcoming surgery! DianneMike Richter <mrichter@...> wrote: At 07:39 AM 7/17/2003 -0700, Dianne McAllister wrote:>Hi Ingrid,>>I think you are correct in seeking another doctor -- this one doesn't >sound like somebody who is very adept in handling your questions, and that >would make me very nervous! Some of those questions should not have been >that difficult to answer. I suspect you will get some very detailed >answers to your questions from some of the others in this group who know >c-toma inside and out ... so I will leave that to them. I have been >reading your posts and just wanted to say that I am so sorry you are >having such a difficult time and will be keeping you in my thoughts and >prayers. I do hope that your pain is alleviated soon and that things >start to look up quickly. How soon will you be seeking a second opinion?First, let me stress that I am new to this group and looking forward (??) to my surgery in two weeks. Having had no symptoms, I feel somewhat distant from the problems raised here; at 64, I feel very much an outsider. Still, I've spent enough time in physicians' offices to have some thoughts to offer.Seeking a second opinion after the surgery may not be as useful as one might hope. Notoriously, information about the growth is visible only when the ear is open. The other doctor may have a report from the first, but that is hardly comparable with the microscopic view. In addition, one must make allowance for the fact that surgeons are notoriously poor communicators. Many of them are pleased that their patients are incommunicado while being treated.I am assured by those I trust that my surgeon (Dr. s of UCLA) is outstanding. However, while he is a very pleasant fellow in the office, he is an abominable communicator. Perhaps to "protect" me, he did not give me the diagnosis; a few days after we looked at the CT scan, his office called to schedule surgery, assuming that since he felt it was appropriate, I would simply charge ahead with it. After getting the diagnosis from my primary care physician, checking it out with various sources, and realizing that there is no alternative, I did schedule surgery - but no thanks to the surgeon.I suggest that Ingrid begin her search for help with her primary care physician, not with another otologist or otolaryngologist. Your regular doctor knows you, how you rate your discomfort, how you heal and, perhaps most importantly, how to communicate with you. She can also properly get your records and ask your surgeon questions which might be resented from another surgeon. In short, your regular doctor may not be expert in ctoma, but she should be expert in communication which is more important for your well-being now.And if she feels you should see another specialist, she will be able to smooth the way.Mikemrichter@...http://www.mrichter.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2003 Report Share Posted July 17, 2003 Hi Ingrid, I am sorry you aren't getting all the info from your doctor that you want, I can offer some advice on the pain...the throbbing in my head, same area you explained really didn't go away for a month. It did get easier over time, but it did not go away before my initial Vicodine prescription ran out and I remember having that prescription filled for another week (So that would mean two weeks of serious pain). I also took the pills exactly every 4 hours because I couldn't tolerate waiting any longer. It did get better, I know its hard but try to take care of yourself as best you can. Good luck, Melody Ingrid Jannetta <ing@...> wrote: Yesterday was a week after my surgery and I went back to see my Dr. I am getting a second opinion from another doctor, but need to share this. I asked my Dr the following questions and His answers follow: How big was the C-Toma? 4.25.MM Where was the C-Toma located? Behind the eardrum. How come the surgery was supposed to be from inside my ear and I now have a 1 1/2 inch incision with 6 stitches about my ear? The ear was worse than expected. Did you get all of the C-Toma? From what I could see through the Microscope I did. Will it come back? Don't Know How come I have been able to hear in my left ear since February with no bones in my ear? I was amazed that you were able to and could not explain it. Was the C-Toma somehow involved with my being able to hear? No it was the cartilage that I used as a graft for the Stapes bone area after the Stapedectomy. Will I be able to have the reconstructive surgery now that you have removed the C-Toma? His answer was to just shake his head like he didn't know I told him that I am in alot of pain at night and I cannot get the throbbing to stop. I end up taking 2 Lotab 5/500 at 8:00pm, 12:00am and 4:00am each night. I only sleep about 1 1/2 hours at a time and that is usually about an hour after I take the Lortab. During the day I can deal with it and it is not as bad. The area that throbs is about a 3 inch diameter circle around my ear. I usually have a high tolerance for pain, but this throbbing is driving me crazy!!! This has been going on for a week. The Dr said that I am at the point where the pain should be going away. That's just fine, but mine is not. He did not address it any further I am seeing another Dr next week for another opinion. I gave up asking anymore questions and decided that this was my last visit to this doctor. Can anyone decipher the information above? I am so thankful I joined this group, I would still be totally clueless if I hadn't. Sincerely, Ingrid Jannetta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 'Bout all you can do is get up and do it. Habits are formed by doing things over and over again. It is said that something done 150 times will become a habit whether you want it to or not. You eat 150 authorized meals and you won't want to eat any other way. Go to the gym 150 times and you'll feel weird missing a workout.Make today count because laziness will only continue the downward spiral and breed even more laziness. There is no magic bullet. The folks on this board have all the advice anyone could ask for but in the end you are responsible for putting it all together. Stasia Quote Link to comment Share on other sites More sharing options...
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