Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 hello and welcome has your son ever had a EEG done? Overnight EEG? To see if he has seizures or seizure acivity. Diane Fox Foxmom6 Hello > Hi I have been reading postings for a while now. I only posted once because > I do get a lot of info from just reading everybody else's postings. > > My son and I have both been diagnosed with tonsillar ectopia, similar to > chiari, just 2 mm. However, we both have all the symptoms you guys list. > Our main concern, that I haven't heard a lot about though, is we have > seizure-like tremors. > > My son's is way more traumatic than mine and they have him on ativan, > dilatin and valium, just to get him through a day without tremors. He is > rushed to the hospital still on a regular basis. Because his > tremors/seizures get so bad he has trouble breathing and is incoherent. > > Does anyone else have this problem? Lately, his and mine both seem to be > getting worse because it is like our muscles in our whole body contract and > tighten/lock up and our muscles spasms. It is like we are being squished up > in a tiny, tight spring. They stayed locked up for a few minutes release and > then lock back up. > > Another question I have is we have an appointment with Dr. Benzel at the > Cleveland Clinic. I have seen him in postings in this group and feel > relatively safe going there. I am petrified though about surgery. > > I mean I know my son can't go on living like he is now. He is 16, starting > his senior year in highschool and has no real life right now, and I pray > daily that he can get the surgery and live a happy, healthy, normal life like > any kid deserves. I would take all his pain and anguish and every tremor he > has if I could. > > But, anyway, in reading the postings in this group, it seems that the > symptoms come back a lot. So why go through the surgery if it doesn't make > the symptoms go away? What does the surgery accomplish? Does it alleviate > any of the symptoms? > > Anyway, that is my babble for today, I just want to do whatever I can to help > my son out. > > Thanks a lot Sue and > > Help section: http://www.yahoogroups.com/help/ > > NOTE: NCC refers to posts with No Chiari Content > > To Unsubscribe Yourself: > chiari-unsubscribe > > WACMA Home: Http://www.wacma.com > > WACMA Online Group: http://groups.yahoo.com/group/chiari/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 HI Sue, I'm sorry you're going through all of this. Where I can't answer your first question coherently, I can answer WHY we go through it. Before my surgery, I was barely able to speak much better than a 2 year old. The compression of the cerebellum against the foram were quite bad in my case. I could feel myself dying from this. Yes... I still battle with symptoms from sringomeila and chiari, and have some horrible days. But, I am still alive for the times in-between, and appreciate each day of life, more than I did before. So in the long run, it's worth having the surgery that stops the progression of symptoms. Would I do it again? If I have to, I will. Just hope I don't have to. Hope this answers your second question. Take care, and God Bless, Beth Brinna's Dream.com www.brinnasdream.com Hello | Hi I have been reading postings for a while now. I only posted once because | I do get a lot of info from just reading everybody else's postings. | | My son and I have both been diagnosed with tonsillar ectopia, similar to | chiari, just 2 mm. However, we both have all the symptoms you guys list. | Our main concern, that I haven't heard a lot about though, is we have | seizure-like tremors. | | My son's is way more traumatic than mine and they have him on ativan, | dilatin and valium, just to get him through a day without tremors. He is | rushed to the hospital still on a regular basis. Because his | tremors/seizures get so bad he has trouble breathing and is incoherent. | | Does anyone else have this problem? Lately, his and mine both seem to be | getting worse because it is like our muscles in our whole body contract and | tighten/lock up and our muscles spasms. It is like we are being squished up | in a tiny, tight spring. They stayed locked up for a few minutes release and | then lock back up. | | Another question I have is we have an appointment with Dr. Benzel at the | Cleveland Clinic. I have seen him in postings in this group and feel | relatively safe going there. I am petrified though about surgery. | | I mean I know my son can't go on living like he is now. He is 16, starting | his senior year in highschool and has no real life right now, and I pray | daily that he can get the surgery and live a happy, healthy, normal life like | any kid deserves. I would take all his pain and anguish and every tremor he | has if I could. | | But, anyway, in reading the postings in this group, it seems that the | symptoms come back a lot. So why go through the surgery if it doesn't make | the symptoms go away? What does the surgery accomplish? Does it alleviate | any of the symptoms? | | Anyway, that is my babble for today, I just want to do whatever I can to help | my son out. | | Thanks a lot Sue and | | Help section: http://www.yahoogroups.com/help/ | | NOTE: NCC refers to posts with No Chiari Content | | To Unsubscribe Yourself: | chiari-unsubscribe | | WACMA Home: Http://www.wacma.com | | WACMA Online Group: http://groups.yahoo.com/group/chiari/ | | | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 > > Hello, I'm new! Not sure what to do! Hello to you as well....a good place to start would be an introduction of who you are and what has brought you here to our wonderful group. Next would be to kick back and relax, learn, laugh, cry or vent and know that you are among friends who understand. Hugs Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2005 Report Share Posted November 13, 2005 Hi, Lynn, you've certainly found the right community! My son has a bilateral loss, so I'm not in your exact situation. I HAVE heard of the EduLink: my audi is recommending it for my daughter next year (she has a mild loss, and will be entering middle school); I believe it is an ear-level FM system that goes on your daughter's good (non-hearing-impaired) ear. There is a boy in our elementary school with a unilateral loss, and that is what he uses, with success. I'm sure others will have more ideas for you -- the joy of this community! Take care, Stefanie Mom to Ben, 7, severe/profound HOH, and Isabella, 10, mild loss on 11/13/05 9:50 PM, ltramey at ltramey@... wrote: > I've just joined the group and had a wonderful time reading through > some of the archives for the past two days. My 8 year old daughter > Caitlin has unilateral moderate-severe hearing loss due to a > cholesteatoma that eroded her hearing bones (and reconstruction was > unsuccessful). She wears a hearing aid, uses a totable fm system, and > has an IEP for speech and language. > > It has been great to read the posts from people who have very > different experiences but all clearly care passionately about their > children. > > I admit that I joined (as maybe most people do) because I'm feeling > fairly isolated with the concerns I have about Caitlin, but I've > already seen that some others have related problems. Our main problem > is that the school does not see unilateral loss as a real problem, > despite my audiologist's report that Caitlin misses 52% of what is > said when there is background noise similar to that of a cafeteria or > noisy classroom. The worst person is the " hearing consultant " who in > the last IEP declared that Caitlin is not certifiable as hearing > impaired, even though she had never met Caitlin nor did she have any > information about her academic success or failure. I have since sent > her a great pioneering article about unilateral loss and educational > impact (Bess and Tharpe 1986), but it seems to make no difference. > Since Caitlin has met her speech goals, her IEP is up for review and > the school has indicated that they don't think she's eligible for > special services, including the reading instruction she now > receives to help with her poor spelling. They will, however, continue > to use the FM system as a " favor. " Since my wonderful audiologist, > when I told her about this meeting, immediately filled out a form to > certify her as hearing impaired, the school system is now > reconsidering (because they have to). But I already have an inkling > of what they will say, as the hearing consultant has observed my > daughter 4 times and sent me copies of the reports. She portrays > Caitlin as a kid who hears perfectly well, but refuses to follow > directions and is disruptive and insolent. Errors in spelling, etc., > are due to her carelessness. I could go on, but you get the idea. > > Their opposition has made me more determined! I plan to go to the > next IEP meeting with specific requests, and I was wondering if anyone > had ideas. The totable FM is often on the blink or misused and > Caitlin hates it. The audiologist suggested EduLink (has anyone heard > of it?). FM on the hearing aid isn't quite right for unilateral loss, > I believe. I have seen some people mention that their children were > being instructed on how to lip read-- that seems like it would be very > useful. Her IEP suggests reducing classroom noise, and so far this > has just meant putting tennis balls on the chair feet. > > Again, it's great just to listen in on the chatter. Thanks for any > responses. > --Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2005 Report Share Posted November 13, 2005 Hi, Lynn, you've certainly found the right community! My son has a bilateral loss, so I'm not in your exact situation. I HAVE heard of the EduLink: my audi is recommending it for my daughter next year (she has a mild loss, and will be entering middle school); I believe it is an ear-level FM system that goes on your daughter's good (non-hearing-impaired) ear. There is a boy in our elementary school with a unilateral loss, and that is what he uses, with success. I'm sure others will have more ideas for you -- the joy of this community! Take care, Stefanie Mom to Ben, 7, severe/profound HOH, and Isabella, 10, mild loss on 11/13/05 9:50 PM, ltramey at ltramey@... wrote: > I've just joined the group and had a wonderful time reading through > some of the archives for the past two days. My 8 year old daughter > Caitlin has unilateral moderate-severe hearing loss due to a > cholesteatoma that eroded her hearing bones (and reconstruction was > unsuccessful). She wears a hearing aid, uses a totable fm system, and > has an IEP for speech and language. > > It has been great to read the posts from people who have very > different experiences but all clearly care passionately about their > children. > > I admit that I joined (as maybe most people do) because I'm feeling > fairly isolated with the concerns I have about Caitlin, but I've > already seen that some others have related problems. Our main problem > is that the school does not see unilateral loss as a real problem, > despite my audiologist's report that Caitlin misses 52% of what is > said when there is background noise similar to that of a cafeteria or > noisy classroom. The worst person is the " hearing consultant " who in > the last IEP declared that Caitlin is not certifiable as hearing > impaired, even though she had never met Caitlin nor did she have any > information about her academic success or failure. I have since sent > her a great pioneering article about unilateral loss and educational > impact (Bess and Tharpe 1986), but it seems to make no difference. > Since Caitlin has met her speech goals, her IEP is up for review and > the school has indicated that they don't think she's eligible for > special services, including the reading instruction she now > receives to help with her poor spelling. They will, however, continue > to use the FM system as a " favor. " Since my wonderful audiologist, > when I told her about this meeting, immediately filled out a form to > certify her as hearing impaired, the school system is now > reconsidering (because they have to). But I already have an inkling > of what they will say, as the hearing consultant has observed my > daughter 4 times and sent me copies of the reports. She portrays > Caitlin as a kid who hears perfectly well, but refuses to follow > directions and is disruptive and insolent. Errors in spelling, etc., > are due to her carelessness. I could go on, but you get the idea. > > Their opposition has made me more determined! I plan to go to the > next IEP meeting with specific requests, and I was wondering if anyone > had ideas. The totable FM is often on the blink or misused and > Caitlin hates it. The audiologist suggested EduLink (has anyone heard > of it?). FM on the hearing aid isn't quite right for unilateral loss, > I believe. I have seen some people mention that their children were > being instructed on how to lip read-- that seems like it would be very > useful. Her IEP suggests reducing classroom noise, and so far this > has just meant putting tennis balls on the chair feet. > > Again, it's great just to listen in on the chatter. Thanks for any > responses. > --Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2005 Report Share Posted November 14, 2005 Hi Lynn, Welcome to the group! I'm Kerry and mom to Hadley, age 4, who was diagnosed with her hearing loss at birth through the newborn hearing screen. She has a severe bilateral hearing loss, wears hearing aids, and receives auditory-verbal therapy. Have you read Carol Flexer's articles on unilateral hearing loss? They have all come out in the last few years, so reflect the more current research than 1986. (her website has a partial list of her publications and contact information for her: http://www.uakron.edu/colleges/faa/depts/sslpa/faculty/Flexer.php) AGBell (www.agbell.org) also has published journal articles on this in their publication, the Volta Review (which would have an extensive references section citing more research). Good luck! Kerry hello I've just joined the group and had a wonderful time reading through some of the archives for the past two days. My 8 year old daughter Caitlin has unilateral moderate-severe hearing loss due to a cholesteatoma that eroded her hearing bones (and reconstruction was unsuccessful). She wears a hearing aid, uses a totable fm system, and has an IEP for speech and language. It has been great to read the posts from people who have very different experiences but all clearly care passionately about their children. I admit that I joined (as maybe most people do) because I'm feeling fairly isolated with the concerns I have about Caitlin, but I've already seen that some others have related problems. Our main problem is that the school does not see unilateral loss as a real problem, despite my audiologist's report that Caitlin misses 52% of what is said when there is background noise similar to that of a cafeteria or noisy classroom. The worst person is the " hearing consultant " who in the last IEP declared that Caitlin is not certifiable as hearing impaired, even though she had never met Caitlin nor did she have any information about her academic success or failure. I have since sent her a great pioneering article about unilateral loss and educational impact (Bess and Tharpe 1986), but it seems to make no difference. Since Caitlin has met her speech goals, her IEP is up for review and the school has indicated that they don't think she's eligible for special services, including the reading instruction she now receives to help with her poor spelling. They will, however, continue to use the FM system as a " favor. " Since my wonderful audiologist, when I told her about this meeting, immediately filled out a form to certify her as hearing impaired, the school system is now reconsidering (because they have to). But I already have an inkling of what they will say, as the hearing consultant has observed my daughter 4 times and sent me copies of the reports. She portrays Caitlin as a kid who hears perfectly well, but refuses to follow directions and is disruptive and insolent. Errors in spelling, etc., are due to her carelessness. I could go on, but you get the idea. Their opposition has made me more determined! I plan to go to the next IEP meeting with specific requests, and I was wondering if anyone had ideas. The totable FM is often on the blink or misused and Caitlin hates it. The audiologist suggested EduLink (has anyone heard of it?). FM on the hearing aid isn't quite right for unilateral loss, I believe. I have seen some people mention that their children were being instructed on how to lip read-- that seems like it would be very useful. Her IEP suggests reducing classroom noise, and so far this has just meant putting tennis balls on the chair feet. Again, it's great just to listen in on the chatter. Thanks for any responses. --Lynn All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2005 Report Share Posted November 14, 2005 Hi Lynn, Welcome to the group! I'm Kerry and mom to Hadley, age 4, who was diagnosed with her hearing loss at birth through the newborn hearing screen. She has a severe bilateral hearing loss, wears hearing aids, and receives auditory-verbal therapy. Have you read Carol Flexer's articles on unilateral hearing loss? They have all come out in the last few years, so reflect the more current research than 1986. (her website has a partial list of her publications and contact information for her: http://www.uakron.edu/colleges/faa/depts/sslpa/faculty/Flexer.php) AGBell (www.agbell.org) also has published journal articles on this in their publication, the Volta Review (which would have an extensive references section citing more research). Good luck! Kerry hello I've just joined the group and had a wonderful time reading through some of the archives for the past two days. My 8 year old daughter Caitlin has unilateral moderate-severe hearing loss due to a cholesteatoma that eroded her hearing bones (and reconstruction was unsuccessful). She wears a hearing aid, uses a totable fm system, and has an IEP for speech and language. It has been great to read the posts from people who have very different experiences but all clearly care passionately about their children. I admit that I joined (as maybe most people do) because I'm feeling fairly isolated with the concerns I have about Caitlin, but I've already seen that some others have related problems. Our main problem is that the school does not see unilateral loss as a real problem, despite my audiologist's report that Caitlin misses 52% of what is said when there is background noise similar to that of a cafeteria or noisy classroom. The worst person is the " hearing consultant " who in the last IEP declared that Caitlin is not certifiable as hearing impaired, even though she had never met Caitlin nor did she have any information about her academic success or failure. I have since sent her a great pioneering article about unilateral loss and educational impact (Bess and Tharpe 1986), but it seems to make no difference. Since Caitlin has met her speech goals, her IEP is up for review and the school has indicated that they don't think she's eligible for special services, including the reading instruction she now receives to help with her poor spelling. They will, however, continue to use the FM system as a " favor. " Since my wonderful audiologist, when I told her about this meeting, immediately filled out a form to certify her as hearing impaired, the school system is now reconsidering (because they have to). But I already have an inkling of what they will say, as the hearing consultant has observed my daughter 4 times and sent me copies of the reports. She portrays Caitlin as a kid who hears perfectly well, but refuses to follow directions and is disruptive and insolent. Errors in spelling, etc., are due to her carelessness. I could go on, but you get the idea. Their opposition has made me more determined! I plan to go to the next IEP meeting with specific requests, and I was wondering if anyone had ideas. The totable FM is often on the blink or misused and Caitlin hates it. The audiologist suggested EduLink (has anyone heard of it?). FM on the hearing aid isn't quite right for unilateral loss, I believe. I have seen some people mention that their children were being instructed on how to lip read-- that seems like it would be very useful. Her IEP suggests reducing classroom noise, and so far this has just meant putting tennis balls on the chair feet. Again, it's great just to listen in on the chatter. Thanks for any responses. --Lynn All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2005 Report Share Posted December 11, 2005 ROFL well.....I don't need "particulars" but it IS exercise right?? heh heh (at least what I remember of it anyway LOLOLOL) Melody Moris, Leader TOPS #Tx1454, Pleasanton http://www.texastops.org email: mmoris@... From: TexasTOPS [mailto:TexasTOPS ] On Behalf Of Hamilton & FeeserSent: Saturday, December 10, 2005 11:59 PMTo: TexasTOPS Subject: Re: hello >>>Melody wrote: Well gosh Eloy!! Just how much "great sex" are we talkin'???? LOL that's good exercise! We can add that to your exercise total this week.....bet you're really rackin' up the points huh???Oh gosh!! Please don't make him give us a report on the length of time spent at it!! :-[ hugs,janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2005 Report Share Posted December 11, 2005 >>>Melody wrote: ROFL well.....I don't need "particulars" but it IS exercise right?? Well, I must confess to checkin' the clock once before and thinkin' "I'm counting this towards my exercise minutes". :-[ hugs, Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 Thanks, and Happy New Year!!! Bethramirezej@... wrote: Hi group! I don't have much to say, just want to give my love and support, hope you have a great tops day tomorrow, love Eloy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 Thanks, and Happy New Year!!! Bethramirezej@... wrote: Hi group! I don't have much to say, just want to give my love and support, hope you have a great tops day tomorrow, love Eloy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 Thanks, and Happy New Year!!! Bethramirezej@... wrote: Hi group! I don't have much to say, just want to give my love and support, hope you have a great tops day tomorrow, love Eloy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Sharon why did it take 4 weeks for the results?Since I am new can you tell me what your diagnosis was and what came next.You have been the only other with implants prior to BC so I really would appreciate any info you would be willing to share.Thanks to all for everyones support and help . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Sharon why did it take 4 weeks for the results?Since I am new can you tell me what your diagnosis was and what came next.You have been the only other with implants prior to BC so I really would appreciate any info you would be willing to share.Thanks to all for everyones support and help . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Sharon why did it take 4 weeks for the results?Since I am new can you tell me what your diagnosis was and what came next.You have been the only other with implants prior to BC so I really would appreciate any info you would be willing to share.Thanks to all for everyones support and help . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Welcome , Yes, I guess there is not too many bc women with implants. I think the office nurse bungled my records. I tried to pin the doctor down but he apologized and said they lost records. It should not take four weeks but call the doctor often. My medical insurance had me going through my family doctor and not my gynecologist or xray tech. I did not call often enough because, hey, I was in denial. No way I would have BC. I had a 1.5cm tumor; lumpectomy, and 30 radiation treatments. I am now on Arimidex for five years and I am 54. I took hormone replacement for 3 yrs. before the detection. Honestly, I felt a little lump but thought it was nothing a year and a half ago. Plus I had a mammogram and that was negative. I believe that with implants it is harder to detect breast cancer through mammogram. I should have been tested two years ago via ultrasound. But my xray tech said they hardly see any bc women with implants. Don't know why as there was rumor that they caused bc. I knew of the danger but again thought I was untouchable. I have had my implants since I was 35 yrs. old. After my last child. The good thing is that when they took out the cancer tissue, the implant fitted like nothing had been removed. There are different stages that you will go through but we are here for you. The stereotactic biopsy is weird. You will be sore and bruised for about a month. Again, when the doctor for the stereotactic took my biopsy; he said after the procedure, take care and it will be alright. I guess I thought I don't have bc. Keep us posted and email me anytime. My email is shndbt@.... , where do you live? Sharon C Los Angeles Ca Ladner wrote: Sharon why did it take 4 weeks for the results?Since I am new can you tell me what your diagnosis was and what came next.You have been the only other with implants prior to BC so I really would appreciate any info you would be willing to share.Thanks to all for everyones support and help . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Welcome , Yes, I guess there is not too many bc women with implants. I think the office nurse bungled my records. I tried to pin the doctor down but he apologized and said they lost records. It should not take four weeks but call the doctor often. My medical insurance had me going through my family doctor and not my gynecologist or xray tech. I did not call often enough because, hey, I was in denial. No way I would have BC. I had a 1.5cm tumor; lumpectomy, and 30 radiation treatments. I am now on Arimidex for five years and I am 54. I took hormone replacement for 3 yrs. before the detection. Honestly, I felt a little lump but thought it was nothing a year and a half ago. Plus I had a mammogram and that was negative. I believe that with implants it is harder to detect breast cancer through mammogram. I should have been tested two years ago via ultrasound. But my xray tech said they hardly see any bc women with implants. Don't know why as there was rumor that they caused bc. I knew of the danger but again thought I was untouchable. I have had my implants since I was 35 yrs. old. After my last child. The good thing is that when they took out the cancer tissue, the implant fitted like nothing had been removed. There are different stages that you will go through but we are here for you. The stereotactic biopsy is weird. You will be sore and bruised for about a month. Again, when the doctor for the stereotactic took my biopsy; he said after the procedure, take care and it will be alright. I guess I thought I don't have bc. Keep us posted and email me anytime. My email is shndbt@.... , where do you live? Sharon C Los Angeles Ca Ladner wrote: Sharon why did it take 4 weeks for the results?Since I am new can you tell me what your diagnosis was and what came next.You have been the only other with implants prior to BC so I really would appreciate any info you would be willing to share.Thanks to all for everyones support and help . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Welcome , Yes, I guess there is not too many bc women with implants. I think the office nurse bungled my records. I tried to pin the doctor down but he apologized and said they lost records. It should not take four weeks but call the doctor often. My medical insurance had me going through my family doctor and not my gynecologist or xray tech. I did not call often enough because, hey, I was in denial. No way I would have BC. I had a 1.5cm tumor; lumpectomy, and 30 radiation treatments. I am now on Arimidex for five years and I am 54. I took hormone replacement for 3 yrs. before the detection. Honestly, I felt a little lump but thought it was nothing a year and a half ago. Plus I had a mammogram and that was negative. I believe that with implants it is harder to detect breast cancer through mammogram. I should have been tested two years ago via ultrasound. But my xray tech said they hardly see any bc women with implants. Don't know why as there was rumor that they caused bc. I knew of the danger but again thought I was untouchable. I have had my implants since I was 35 yrs. old. After my last child. The good thing is that when they took out the cancer tissue, the implant fitted like nothing had been removed. There are different stages that you will go through but we are here for you. The stereotactic biopsy is weird. You will be sore and bruised for about a month. Again, when the doctor for the stereotactic took my biopsy; he said after the procedure, take care and it will be alright. I guess I thought I don't have bc. Keep us posted and email me anytime. My email is shndbt@.... , where do you live? Sharon C Los Angeles Ca Ladner wrote: Sharon why did it take 4 weeks for the results?Since I am new can you tell me what your diagnosis was and what came next.You have been the only other with implants prior to BC so I really would appreciate any info you would be willing to share.Thanks to all for everyones support and help . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 > > Hello , > > Yes, it is a waiting game. I had to wait two weeks for the stereotactic biopsy as the van only came to the clinic every two weeks. Then I had to wait another four weeks to get the results. Even when I called the Dr. every day. Sharon, I had this same biopsy technique since I had large breasts (no implants) and knew the results as soon as I saw the tissue sample on the tray- grainy---- and that meant cancer from what I knew myself on tissue samples and their appearance. .. I only had to wait two days for the lab to confirm it. I am appalled that women IN SOME PARTS OF THE WORLD INCLUDING THE USA have to wait weeks for the biopsy and longer to get the results...and then wait for surgery. THIS IS NOT ACCEPTABLE. We CAN change this system to save our sisters' lives. Some cancers spread quickly so why is our response time so slow in some cases? Response time is important. I am thinking we need to get more attention to this issue. I am open to any ideas to bring it to the forefront. Suggestions? Andree www.essentialsoapsinc.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 > > Hello , > > Yes, it is a waiting game. I had to wait two weeks for the stereotactic biopsy as the van only came to the clinic every two weeks. Then I had to wait another four weeks to get the results. Even when I called the Dr. every day. Sharon, I had this same biopsy technique since I had large breasts (no implants) and knew the results as soon as I saw the tissue sample on the tray- grainy---- and that meant cancer from what I knew myself on tissue samples and their appearance. .. I only had to wait two days for the lab to confirm it. I am appalled that women IN SOME PARTS OF THE WORLD INCLUDING THE USA have to wait weeks for the biopsy and longer to get the results...and then wait for surgery. THIS IS NOT ACCEPTABLE. We CAN change this system to save our sisters' lives. Some cancers spread quickly so why is our response time so slow in some cases? Response time is important. I am thinking we need to get more attention to this issue. I am open to any ideas to bring it to the forefront. Suggestions? Andree www.essentialsoapsinc.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 > > Hello , > > Yes, it is a waiting game. I had to wait two weeks for the stereotactic biopsy as the van only came to the clinic every two weeks. Then I had to wait another four weeks to get the results. Even when I called the Dr. every day. Sharon, I had this same biopsy technique since I had large breasts (no implants) and knew the results as soon as I saw the tissue sample on the tray- grainy---- and that meant cancer from what I knew myself on tissue samples and their appearance. .. I only had to wait two days for the lab to confirm it. I am appalled that women IN SOME PARTS OF THE WORLD INCLUDING THE USA have to wait weeks for the biopsy and longer to get the results...and then wait for surgery. THIS IS NOT ACCEPTABLE. We CAN change this system to save our sisters' lives. Some cancers spread quickly so why is our response time so slow in some cases? Response time is important. I am thinking we need to get more attention to this issue. I am open to any ideas to bring it to the forefront. Suggestions? Andree www.essentialsoapsinc.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 > the results...and > then wait for surgery. THIS IS NOT ACCEPTABLE. We > CAN change this > system to save our sisters' lives. Some cancers > spread quickly so why > is our response time so slow in some cases? > Response time is important. I am thinking we need to > get more attention > to this issue. I am open to any ideas to bring it to > the forefront. > > AMEN!!== I dont know what the answer is, but I for one am willing to think about it--with you and the rest of the women here...I'm tired of marketing schemes-- " think pink " -- and all the rest...it distracts us. marisa Suggestions? > Andree > www.essentialsoapsinc.com > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 > the results...and > then wait for surgery. THIS IS NOT ACCEPTABLE. We > CAN change this > system to save our sisters' lives. Some cancers > spread quickly so why > is our response time so slow in some cases? > Response time is important. I am thinking we need to > get more attention > to this issue. I am open to any ideas to bring it to > the forefront. > > AMEN!!== I dont know what the answer is, but I for one am willing to think about it--with you and the rest of the women here...I'm tired of marketing schemes-- " think pink " -- and all the rest...it distracts us. marisa Suggestions? > Andree > www.essentialsoapsinc.com > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 > the results...and > then wait for surgery. THIS IS NOT ACCEPTABLE. We > CAN change this > system to save our sisters' lives. Some cancers > spread quickly so why > is our response time so slow in some cases? > Response time is important. I am thinking we need to > get more attention > to this issue. I am open to any ideas to bring it to > the forefront. > > AMEN!!== I dont know what the answer is, but I for one am willing to think about it--with you and the rest of the women here...I'm tired of marketing schemes-- " think pink " -- and all the rest...it distracts us. marisa Suggestions? > Andree > www.essentialsoapsinc.com > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 Marisa wrote: > > Some cancers > > spread quickly so why > > is our response time so slow in some cases? > > Response time is important. I am thinking we need to > > get more attention > > to this issue. I am open to any ideas to bring it to > > the forefront. > > > > > > AMEN!!== I dont know what the answer is, but I for one > am willing to think about it--with you and the rest of > the women here...I'm tired of marketing > schemes-- " think pink " -- and all the rest...it > distracts us. > > marisa > I do agree about the marketing schemes - people can go about wearing a pink ribbon and not giving BC a second thought. I had a T-shirt printed with the big pink ribbon in the middle, and the words " Breast Cancer - been there, done that ... got the T-shirt! " and it made me feel better. I did donate to one of the cancer patient support charities too 8-) If you want to get one of my T-shirts made, I'll put my design in this group's files. Margery. ============================================ margery@... in North Herts, UK ============================================ Quote Link to comment Share on other sites More sharing options...
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