Guest guest Posted May 30, 2006 Report Share Posted May 30, 2006 What about the sentinel node, if sarc messes with it, it becomes easily accessible by a surgeon//ConnieRose wrote: I don't remember who wrote that she couldn't get a definite sarc diagnosis because her hilar nodes were not accessible for biopsy by mediastinoscopy & a surgeon didn't want to do a thoracotomy. I found this info on a website that I have somehow missed in all my web surfing, but it seems like an excellent resource. I don't know if you can find anybody to do this type of biopsy, but it might be worth at least showing the docs that there are alternatives. I don't where in Europe this study was done. This is a summary of a journal article: 1 Mar 2005 Endoscopic ultrasound-guided fine-needle aspiration for the diagnosis of sarcoidosis. (Eur Respir J. 2005 Mar;25(3):405-9.) Bronchoscopy is a test in which a flexible tube is inserted through the mouth to examine the airways of the lungs. In 30% of patients with suspected sarcoidosis, bronchoscopy with biopsy, or removal of tissue, is unsuccessful as a diagnostic tool and a more invasive mediastinoscopy is done to surgically remove tissue from the lymph nodes. In this study of 51 patients, researchers used a technique called “endoscopic ultrasound-guided fine-needle aspiration” (EUS-FNA) as a nonsurgical alternative to diagnose sarcoidosis by aspirating lymph nodes in the chest from the esophagus. Thirty-six patients (71%) had previously undergone a nondiagnostic bronchoscopy. EUS-FNA demonstrated a high yield in diagnosing sarcoidosis in 41 of 50 patients (82%) without complications. Apparently this wonderful website was already listed in our Links section! If I ever went there, I've forgotten it. I have been reading through the varied info there for at least 20 min. Dr. Sharma is on the Board. They have a PSA done by basketball great Bill & his daughter, who both have sarc. Did you know that there is a Sarcoidosis week? I didn't! Anyway, get a cup of tea & get comfy; you won't want to leave this site. Be sure to check out the research section, where the above study was posted. Someone is studying quality of life issues in sarc patients! What a radical idea! Anyway, here is the web address: http://www.stopsarcoidosis.org/ I might be a day late & a dollar short, but I will always arrive eventually! Ramblin' Rose Moderator Be one of the first to try Windows Live Mail How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2006 Report Share Posted May 30, 2006 Connie, I'm revealing my ignorance here, but what is the sentinel node? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: lymph node biopsyDate: Tue, 30 May 2006 16:14:40 -0700 (PDT)What about the sentinel node, if sarc messes with it, it becomes easily accessible by a surgeon//ConnieRose wrote: I don't remember who wrote that she couldn't get a definite sarc diagnosis because her hilar nodes were not accessible for biopsy by mediastinoscopy & a surgeon didn't want to do a thoracotomy. I found this info on a website that I have somehow missed in all my web surfing, but it seems like an excellent resource. I don't know if you can find anybody to do this type of biopsy, but it might be worth at least showing the docs that there are alternatives. I don't where in Europe this study was done. This is a summary of a journal article: 1 Mar 2005 Endoscopic ultrasound-guided fine-needle aspiration for the diagnosis of sarcoidosis. (Eur Respir J. 2005 Mar;25(3):405-9.) Bronchoscopy is a test in which a flexible tube is inserted through the mouth to examine the airways of the lungs. In 30% of patients with suspected sarcoidosis, bronchoscopy with biopsy, or removal of tissue, is unsuccessful as a diagnostic tool and a more invasive mediastinoscopy is done to surgically remove tissue from the lymph nodes. In this study of 51 patients, researchers used a technique called “endoscopic ultrasound-guided fine-needle aspiration” (EUS-FNA) as a nonsurgical alternative to diagnose sarcoidosis by aspirating lymph nodes in the chest from the esophagus. Thirty-six patients (71%) had previously undergone a nondiagnostic bronchoscopy. EUS-FNA demonstrated a high yield in diagnosing sarcoidosis in 41 of 50 patients (82%) without complications. Apparently this wonderful website was already listed in our Links section! If I ever went there, I've forgotten it. I have been reading through the varied info there for at least 20 min. Dr. Sharma is on the Board. They have a PSA done by basketball great Bill & his daughter, who both have sarc. Did you know that there is a Sarcoidosis week? I didn't! Anyway, get a cup of tea & get comfy; you won't want to leave this site. Be sure to check out the research section, where the above study was posted. Someone is studying quality of life issues in sarc patients! What a radical idea! Anyway, here is the web address: http://www.stopsarcoidosis.org/ I might be a day late & a dollar short, but I will always arrive eventually! Ramblin' Rose Moderator Be one of the first to try Windows Live Mail How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 Rose, It's what the cancer specialist called the lymph node right behind the left collar bone. According to the doctor, the other lymph nodes filter through this one like a main pipe, so things going on in the rest of the body will show up here. You can't reach it if it's normal, but if cancer or sarc have had hold of it, it will blow up above the collar bone and becomes easily accessible. In order to keep me from having to go through a mediastenoscopy he went here. When they first felt for it they had trouble reaching it, but within 2 weeks when they got ready to do the surgery the sarc had destroyed it so bad it was above the collar bone.Rose wrote: Connie, I'm revealing my ignorance here, but what is the sentinel node? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: lymph node biopsyDate: Tue, 30 May 2006 16:14:40 -0700 (PDT)What about the sentinel node, if sarc messes with it, it becomes easily accessible by a surgeon//ConnieRose wrote: I don't remember who wrote that she couldn't get a definite sarc diagnosis because her hilar nodes were not accessible for biopsy by mediastinoscopy & a surgeon didn't want to do a thoracotomy. I found this info on a website that I have somehow missed in all my web surfing, but it seems like an excellent resource. I don't know if you can find anybody to do this type of biopsy, but it might be worth at least showing the docs that there are alternatives. I don't where in Europe this study was done. This is a summary of a journal article: 1 Mar 2005 Endoscopic ultrasound-guided fine-needle aspiration for the diagnosis of sarcoidosis. (Eur Respir J. 2005 Mar;25(3):405-9.) Bronchoscopy is a test in which a flexible tube is inserted through the mouth to examine the airways of the lungs. In 30% of patients with suspected sarcoidosis, bronchoscopy with biopsy, or removal of tissue, is unsuccessful as a diagnostic tool and a more invasive mediastinoscopy is done to surgically remove tissue from the lymph nodes. In this study of 51 patients, researchers used a technique called “endoscopic ultrasound-guided fine-needle aspiration” (EUS-FNA) as a nonsurgical alternative to diagnose sarcoidosis by aspirating lymph nodes in the chest from the esophagus. Thirty-six patients (71%) had previously undergone a nondiagnostic bronchoscopy. EUS-FNA demonstrated a high yield in diagnosing sarcoidosis in 41 of 50 patients (82%) without complications. Apparently this wonderful website was already listed in our Links section! If I ever went there, I've forgotten it. I have been reading through the varied info there for at least 20 min. Dr. Sharma is on the Board. They have a PSA done by basketball great Bill & his daughter, who both have sarc. Did you know that there is a Sarcoidosis week? I didn't! Anyway, get a cup of tea & get comfy; you won't want to leave this site. Be sure to check out the research section, where the above study was posted. Someone is studying quality of life issues in sarc patients! What a radical idea! Anyway, here is the web address: http://www.stopsarcoidosis.org/ I might be a day late & a dollar short, but I will always arrive eventually! Ramblin' Rose Moderator Be one of the first to try Windows Live Mail How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 Rose, It's what the cancer specialist called the lymph node right behind the left collar bone. According to the doctor, the other lymph nodes filter through this one like a main pipe, so things going on in the rest of the body will show up here. You can't reach it if it's normal, but if cancer or sarc have had hold of it, it will blow up above the collar bone and becomes easily accessible. In order to keep me from having to go through a mediastenoscopy he went here. When they first felt for it they had trouble reaching it, but within 2 weeks when they got ready to do the surgery the sarc had destroyed it so bad it was above the collar bone.Rose wrote: Connie, I'm revealing my ignorance here, but what is the sentinel node? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: lymph node biopsyDate: Tue, 30 May 2006 16:14:40 -0700 (PDT)What about the sentinel node, if sarc messes with it, it becomes easily accessible by a surgeon//ConnieRose wrote: I don't remember who wrote that she couldn't get a definite sarc diagnosis because her hilar nodes were not accessible for biopsy by mediastinoscopy & a surgeon didn't want to do a thoracotomy. I found this info on a website that I have somehow missed in all my web surfing, but it seems like an excellent resource. I don't know if you can find anybody to do this type of biopsy, but it might be worth at least showing the docs that there are alternatives. I don't where in Europe this study was done. This is a summary of a journal article: 1 Mar 2005 Endoscopic ultrasound-guided fine-needle aspiration for the diagnosis of sarcoidosis. (Eur Respir J. 2005 Mar;25(3):405-9.) Bronchoscopy is a test in which a flexible tube is inserted through the mouth to examine the airways of the lungs. In 30% of patients with suspected sarcoidosis, bronchoscopy with biopsy, or removal of tissue, is unsuccessful as a diagnostic tool and a more invasive mediastinoscopy is done to surgically remove tissue from the lymph nodes. In this study of 51 patients, researchers used a technique called “endoscopic ultrasound-guided fine-needle aspiration” (EUS-FNA) as a nonsurgical alternative to diagnose sarcoidosis by aspirating lymph nodes in the chest from the esophagus. Thirty-six patients (71%) had previously undergone a nondiagnostic bronchoscopy. EUS-FNA demonstrated a high yield in diagnosing sarcoidosis in 41 of 50 patients (82%) without complications. Apparently this wonderful website was already listed in our Links section! If I ever went there, I've forgotten it. I have been reading through the varied info there for at least 20 min. Dr. Sharma is on the Board. They have a PSA done by basketball great Bill & his daughter, who both have sarc. Did you know that there is a Sarcoidosis week? I didn't! Anyway, get a cup of tea & get comfy; you won't want to leave this site. Be sure to check out the research section, where the above study was posted. Someone is studying quality of life issues in sarc patients! What a radical idea! Anyway, here is the web address: http://www.stopsarcoidosis.org/ I might be a day late & a dollar short, but I will always arrive eventually! Ramblin' Rose Moderator Be one of the first to try Windows Live Mail How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 Rose, It is me - I am still in a holding pattern. I am too disgusted to even know what to do anymore. I can now add dizziness to my repetoire. Terri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 Terry, If I'm not being to nosey, what happened? Take care...Conniemosaicgirl1 wrote: Rose, It is me - I am still in a holding pattern. I am too disgusted to even know what to do anymore. I can now add dizziness to my repetoire. Terri G. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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