Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Donna, It's wonderful to see a aunt that is so compassionate about her nephew. I could only wish that for my children. I am also from Illinois, where about are you from? What types of symptoms is your nephew having? This group can be very helpful. I welcome you here and don't ever think any question is stupid, trust me I have ask many ones that I thought might be irrelevant. Take care and my God bless your nephew and his family Diane Fox Foxmom6 new to group > Hi, > > My 3 year old nephew was recently diagnosed with > Chiari Malo I, and I am trying to read and learn as > much as possible. He is showing the symptoms that > supposedly don't show up until adolescence. His > parents are taking him to the nsg next week. > > I just wanted to introduce myself and learn as much as > I can for my precious little guy. As you can tell, I > am very much a doting (sp?) aunt. > > We have a family trip planned to WDW labor day week > and hope we can still all go as a family, so we are > anxiously waiting how they are going to help with > his condition. > > Thank you for your time and may God bless you all. > > Donna > from Illinois > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 Hi Donna Sorry to hear about your nephew. What are his symptoms? always trying to learn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 Hi Donna Sorry to hear about your nephew. What are his symptoms? always trying to learn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 Hi Donna Sorry to hear about your nephew. What are his symptoms? always trying to learn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 In a message dated 8/28/2005 1:06:09 PM Pacific Standard Time, davehud@... writes: My cardiologist has given me a choice...to either check in the hospital for a couple of days and start me on Flecainide or electrical cardioversion as an out patient procedure. Dave I would have a cardioversion once a week if it kept me in NSR...I definitely have nothing bad to say about cardioversion. It was a VERY easy procedure, I was asleep the entire time, in and out of the hospital within 3-4 hours, and for the MOST part it has helped me be in NSR every day since then ( one month) except for some of my " spells. " (I feel like Granny when I say that.) If you have never had a cardioversion, that would be the first thing I would try. Lil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 In a message dated 8/28/2005 1:06:09 PM Pacific Standard Time, davehud@... writes: My cardiologist has given me a choice...to either check in the hospital for a couple of days and start me on Flecainide or electrical cardioversion as an out patient procedure. Dave I would have a cardioversion once a week if it kept me in NSR...I definitely have nothing bad to say about cardioversion. It was a VERY easy procedure, I was asleep the entire time, in and out of the hospital within 3-4 hours, and for the MOST part it has helped me be in NSR every day since then ( one month) except for some of my " spells. " (I feel like Granny when I say that.) If you have never had a cardioversion, that would be the first thing I would try. Lil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 In a message dated 8/28/2005 1:06:09 PM Pacific Standard Time, davehud@... writes: My cardiologist has given me a choice...to either check in the hospital for a couple of days and start me on Flecainide or electrical cardioversion as an out patient procedure. Dave I would have a cardioversion once a week if it kept me in NSR...I definitely have nothing bad to say about cardioversion. It was a VERY easy procedure, I was asleep the entire time, in and out of the hospital within 3-4 hours, and for the MOST part it has helped me be in NSR every day since then ( one month) except for some of my " spells. " (I feel like Granny when I say that.) If you have never had a cardioversion, that would be the first thing I would try. Lil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 Rob, Thanks for your input. It's nice to know there are people who care enough to help a stranger. Lil seems to think I should go for the cardioversion. I just want this darn thing to go away for good and I'm probably asking for the world. It seems both of you have had good luck with both procedures. I'll sleep on it, thank you again. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 Rob, Thanks for your input. It's nice to know there are people who care enough to help a stranger. Lil seems to think I should go for the cardioversion. I just want this darn thing to go away for good and I'm probably asking for the world. It seems both of you have had good luck with both procedures. I'll sleep on it, thank you again. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 Lil, Thanks for writing me. You seem like a very caring person. I'm glad you are doing well now. One way or another I will get better soon. Thanks again for your thoughts. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 Lil, Thanks for writing me. You seem like a very caring person. I'm glad you are doing well now. One way or another I will get better soon. Thanks again for your thoughts. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 One of the realities is that there are no certainties. Every case seems to be different. Both drug therapy and cardioversion have things to recommend them. Cardioversion is a piece of cake, but few people find it a permanent solution. Drug therapy almost always has side effects. Ablation isn't yet fool proof. Be prepared to spend some time in limbo, making tough decisions. We're here; we're all in the same boat. And we all want to help. Bill Manson " I will have a lawyer with me just to make sure I don't do anything that's potentially stupid, which is a likely possibility. " -- Curt Schilling Re: Re: New to Group Rob, Thanks for your input. It's nice to know there are people who care enough to help a stranger. Lil seems to think I should go for the cardioversion. I just want this darn thing to go away for good and I'm probably asking for the world. It seems both of you have had good luck with both procedures. I'll sleep on it, thank you again. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 One of the realities is that there are no certainties. Every case seems to be different. Both drug therapy and cardioversion have things to recommend them. Cardioversion is a piece of cake, but few people find it a permanent solution. Drug therapy almost always has side effects. Ablation isn't yet fool proof. Be prepared to spend some time in limbo, making tough decisions. We're here; we're all in the same boat. And we all want to help. Bill Manson " I will have a lawyer with me just to make sure I don't do anything that's potentially stupid, which is a likely possibility. " -- Curt Schilling Re: Re: New to Group Rob, Thanks for your input. It's nice to know there are people who care enough to help a stranger. Lil seems to think I should go for the cardioversion. I just want this darn thing to go away for good and I'm probably asking for the world. It seems both of you have had good luck with both procedures. I'll sleep on it, thank you again. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 One of the realities is that there are no certainties. Every case seems to be different. Both drug therapy and cardioversion have things to recommend them. Cardioversion is a piece of cake, but few people find it a permanent solution. Drug therapy almost always has side effects. Ablation isn't yet fool proof. Be prepared to spend some time in limbo, making tough decisions. We're here; we're all in the same boat. And we all want to help. Bill Manson " I will have a lawyer with me just to make sure I don't do anything that's potentially stupid, which is a likely possibility. " -- Curt Schilling Re: Re: New to Group Rob, Thanks for your input. It's nice to know there are people who care enough to help a stranger. Lil seems to think I should go for the cardioversion. I just want this darn thing to go away for good and I'm probably asking for the world. It seems both of you have had good luck with both procedures. I'll sleep on it, thank you again. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2005 Report Share Posted November 24, 2005 Hi, , and welcome to the group, I also have a daughter with a mild loss, rising to normal in the high frequencies. We didn't find out about her loss until she was tested at 3 1/2, because of her newborn brother's hearing loss. At that point, she had an amazing vocabulary and excellent speech, and her audi didn't feel it was necessary to aid her. She is now 10, an excellent student, and she has a soundfield FM in her class. Which is not to say your daughter wouldn't benefit from aids; every child is unique, and you need to find out what works for your daughter, so by all means, give it a try and see what works. As for the guilt on the genetic factor, well, my son's loss is caused by connexin 26, a mutated gene he inherited from both my husband and me. And I don't feel guilty at all: I didn't know we had it, and had no control over passing it down. I feel no more responsible for that than I do for his brown eyes or cheek dimple. What can you do? The genes fall where they may. You gave them life, which is a marvelous thing. I had an amnio when I was pregnant with my son, because I was over 35. After we found out about his hearing loss, and that it was genetic, I wondered what I would have done if they had tested for connexin 26 along with Downs Syndrome and spina bifida. Would I have made a different choice? Actually, I'm really glad I didn't know, because he is a wonderful, joyous, aggravating, awesome little boy. And I would have missed that if I hadn't had him. And I think his hearing loss is a big part of the personality that I love. Oh, well, enough of my blather, go enjoy your turkey, and welcome to the group! Stefanie Mom to Ben, 7, severe/profound HOH, and Isabella, 10, mild loss on 11/24/05 11:15 AM, DMBLin13@... at DMBLin13@... wrote: > Thanks Carmen for the welcome. > > I guess I have garden variety guilt about not aiding her sooner of she > needed it, and being the genetic factor that gave it to her in the > first place. > > LINDA A. > Mom of Triplets > Dylan mild SNHL > Haley mild/mod SNHL > hearing Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Hi Sue, I have basically the same problem as you. I am 38 and I still want to have children. The idea that I might never be able to bear my own is terrible for me and I am learning how to cope with it. But, in the meantime, I did a lot of research and made some decisions in order to preserve the chance of one day be able to conceive. The best shot is to freeze embryos. For me it wasn't a choice. No doctor would do it considering I needed surgery and treatment as soon as possible. They would also have to use hormones to induce ovulation and a hormone dependent cancer would thrive on it. Then, there are two other options and they are both experimental. One is to freeze eggs, but it is the same problem as with freezing embryos, where you would have to induce ovulation to have enough eggs to freeze. They tend to have a loss of about 80% when you need to defrost them. Not a good solution if you can't use hormones for ovulation. If your onc wants to remove the ovaries it is because the cancer is hormone dependent and no one would use hormones to induce ovulation. The other option is to remove one ovary and freeze. Another experimental technique, but I chose it. In the future I might be able to get the tissue grafted into my other ovary, get it funcioning and producing eggs or even transplant to another part of the body and harvest eggs for IVF. Sounds like science fiction, doesn't? You can also try to protect the ovaries with a GnHR inhibitor. In theory it will shut down your ovaries and protect the follicles from the chemo action. You would have to take it before beginning chemo. And last, the choice of chemo agents. Some are less harmful to ovaries then others. The worst of all is cyclophosphamide, the " C " in A/C or CMF. There is a toxic threshold that will not demage the ovary too much and it is age dependent. Chemo combinations are important too. CMF is worse than A/C for fertility. 6 courses of A/C are worse than 4. Taxol doesn't seem to act on fertility as the other ones. And so on and so fourth. By my research at the time, even before going to the onc, I decided that I would go with 4 courses of A/C (keeping below the limit of toxicity, I made sure to tell the doctor about it) and 4 taxol. I paid the price since Taxol is horrible. But if I keep at least the chance of being fertil, it was worth it. I have tons of articles on the subject. Most scientific ones, though. Very technical and boring for those who are not from the biological/medical field. But if you want, drop me a email in pvt and I will send you what I have. And there is always adoption. Those who have gone this path say that it is as fullfilling as bearing your own kids. Again, another personnal decision. I hope I was helpful and ask whatever you want. Hugs PS> I am too dealing with depression, but with no anti-depressants. I am only taking suplements and going to the terapist. But you should do what makes you feel better. new to group Hi All, New to group and here is my saga. Found a lump end of August. Had my first mammogram at the age of 39 on Sept.8th. Had my first dog get really sick on Sept.12th he was diagnosed with a cancerous tumor on his heart wall the next day he was only 10. We did a procedure to buy him some more time but were told it could be 3 days to 3 months. Had my biopsy done on Sept.18th. Still wasnt too concerned as my obgyn was pretty sure it was fibrous tissue and I was more concerned about the dog. My dog took a turn for the worse that night and we had to have him put down on the 19th,, and the 21st my obgyn called with the " I wish I had better news " statement. He rushed me to a surgeon and I had my first surgery Oct.3rd and then onto the oncologist. Few days later I was called and told that my margins were clear but not wide enough and that my suspected 1.5cm tumor came out as 2.8. and two positive lymph nodes and hormone negative. So the second surgery was set for Oct.20th,, went back to the surgeon on Oct. 28th thinking I was just having the incision checked. Well thats when she told me that the second surgery cut back further and revealed 4 more mini-tumors not even large enough to be detected by mammogram or ultrasound. So now she is recommending a mastectomy and the cancer gene test. Oncologist is also recommending the test to decide if i should have a double masectomy and/or my ovaries removed. I have no children and was giving myself at least 1 more year to decide if I wanted them or not. Perhaps this is my answer, especially since the 8 treatments of chemo they are recommending has the chance of forcing my system into early menopause. Everything has happened so fast. My life has been turned upside down in the matter of 6 weeks and I don't even know what to grieve or cry for. I also own my own business and am concerned how I am going to continue that while I am undergoing treatments,can' t afford to close the doors. My doctors have me on anti-depressants, but some days,,, it doesn't seem to be enough. Sorry this is so long, just seems like I have this black cloud hanging over my head and I don't know when it will blow away. Good thoughts to the rest who are going through this horrendous ordeal. Sue New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Hi Sue, I have basically the same problem as you. I am 38 and I still want to have children. The idea that I might never be able to bear my own is terrible for me and I am learning how to cope with it. But, in the meantime, I did a lot of research and made some decisions in order to preserve the chance of one day be able to conceive. The best shot is to freeze embryos. For me it wasn't a choice. No doctor would do it considering I needed surgery and treatment as soon as possible. They would also have to use hormones to induce ovulation and a hormone dependent cancer would thrive on it. Then, there are two other options and they are both experimental. One is to freeze eggs, but it is the same problem as with freezing embryos, where you would have to induce ovulation to have enough eggs to freeze. They tend to have a loss of about 80% when you need to defrost them. Not a good solution if you can't use hormones for ovulation. If your onc wants to remove the ovaries it is because the cancer is hormone dependent and no one would use hormones to induce ovulation. The other option is to remove one ovary and freeze. Another experimental technique, but I chose it. In the future I might be able to get the tissue grafted into my other ovary, get it funcioning and producing eggs or even transplant to another part of the body and harvest eggs for IVF. Sounds like science fiction, doesn't? You can also try to protect the ovaries with a GnHR inhibitor. In theory it will shut down your ovaries and protect the follicles from the chemo action. You would have to take it before beginning chemo. And last, the choice of chemo agents. Some are less harmful to ovaries then others. The worst of all is cyclophosphamide, the " C " in A/C or CMF. There is a toxic threshold that will not demage the ovary too much and it is age dependent. Chemo combinations are important too. CMF is worse than A/C for fertility. 6 courses of A/C are worse than 4. Taxol doesn't seem to act on fertility as the other ones. And so on and so fourth. By my research at the time, even before going to the onc, I decided that I would go with 4 courses of A/C (keeping below the limit of toxicity, I made sure to tell the doctor about it) and 4 taxol. I paid the price since Taxol is horrible. But if I keep at least the chance of being fertil, it was worth it. I have tons of articles on the subject. Most scientific ones, though. Very technical and boring for those who are not from the biological/medical field. But if you want, drop me a email in pvt and I will send you what I have. And there is always adoption. Those who have gone this path say that it is as fullfilling as bearing your own kids. Again, another personnal decision. I hope I was helpful and ask whatever you want. Hugs PS> I am too dealing with depression, but with no anti-depressants. I am only taking suplements and going to the terapist. But you should do what makes you feel better. new to group Hi All, New to group and here is my saga. Found a lump end of August. Had my first mammogram at the age of 39 on Sept.8th. Had my first dog get really sick on Sept.12th he was diagnosed with a cancerous tumor on his heart wall the next day he was only 10. We did a procedure to buy him some more time but were told it could be 3 days to 3 months. Had my biopsy done on Sept.18th. Still wasnt too concerned as my obgyn was pretty sure it was fibrous tissue and I was more concerned about the dog. My dog took a turn for the worse that night and we had to have him put down on the 19th,, and the 21st my obgyn called with the " I wish I had better news " statement. He rushed me to a surgeon and I had my first surgery Oct.3rd and then onto the oncologist. Few days later I was called and told that my margins were clear but not wide enough and that my suspected 1.5cm tumor came out as 2.8. and two positive lymph nodes and hormone negative. So the second surgery was set for Oct.20th,, went back to the surgeon on Oct. 28th thinking I was just having the incision checked. Well thats when she told me that the second surgery cut back further and revealed 4 more mini-tumors not even large enough to be detected by mammogram or ultrasound. So now she is recommending a mastectomy and the cancer gene test. Oncologist is also recommending the test to decide if i should have a double masectomy and/or my ovaries removed. I have no children and was giving myself at least 1 more year to decide if I wanted them or not. Perhaps this is my answer, especially since the 8 treatments of chemo they are recommending has the chance of forcing my system into early menopause. Everything has happened so fast. My life has been turned upside down in the matter of 6 weeks and I don't even know what to grieve or cry for. I also own my own business and am concerned how I am going to continue that while I am undergoing treatments,can' t afford to close the doors. My doctors have me on anti-depressants, but some days,,, it doesn't seem to be enough. Sorry this is so long, just seems like I have this black cloud hanging over my head and I don't know when it will blow away. Good thoughts to the rest who are going through this horrendous ordeal. Sue New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 Lynn, I think you are talking about the automated message that we don't send but happens automatically when you sign up and are approved. All that information should be available (and more) under the " files " section of our Yahoo group. Is you post your Canary Club full lab results we can help you understand them. cheri -----Original Message----- Hi all, When I joined this group I was sent an e-mail with lots of info about adrenals. Somehow that e-mail got deleted, probably operator error. And I wondered if one of you could send it to me again. My e-mail address is lynnkrt2@.... Thanks. Trying to learn about all of this. I had a total thyroidectomy about 40 years ago. I am taking Armour Thyroid but am still hypo. I just got my CanaryClub saliva test results back and trying to understand them. Lynn . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 Lynn, I think you are talking about the automated message that we don't send but happens automatically when you sign up and are approved. All that information should be available (and more) under the " files " section of our Yahoo group. Is you post your Canary Club full lab results we can help you understand them. cheri -----Original Message----- Hi all, When I joined this group I was sent an e-mail with lots of info about adrenals. Somehow that e-mail got deleted, probably operator error. And I wondered if one of you could send it to me again. My e-mail address is lynnkrt2@.... Thanks. Trying to learn about all of this. I had a total thyroidectomy about 40 years ago. I am taking Armour Thyroid but am still hypo. I just got my CanaryClub saliva test results back and trying to understand them. Lynn . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 Lynn, I think you are talking about the automated message that we don't send but happens automatically when you sign up and are approved. All that information should be available (and more) under the " files " section of our Yahoo group. Is you post your Canary Club full lab results we can help you understand them. cheri -----Original Message----- Hi all, When I joined this group I was sent an e-mail with lots of info about adrenals. Somehow that e-mail got deleted, probably operator error. And I wondered if one of you could send it to me again. My e-mail address is lynnkrt2@.... Thanks. Trying to learn about all of this. I had a total thyroidectomy about 40 years ago. I am taking Armour Thyroid but am still hypo. I just got my CanaryClub saliva test results back and trying to understand them. Lynn . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2010 Report Share Posted May 8, 2010 How does one go about weaning off of T3? Wha are safe increments in reduction? I'm taking 25 mcg now but I did reduce by 12.5 yesterday. Was that too much? Does anyone have a protocol? My B/P is running high and so are temps. I am eating like a horse to stave off the heartburn I'm having. Thanks Deb Quote Link to comment Share on other sites More sharing options...
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