Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 > I have my annual check-up with my cardiologist on Monday, but it > will be my first appointment with him since my EDS diagnosis. I > printed the article on " EDS and the Heart " from the UK's EDS support > site, but I was wondering if anyone knew of any other articles I > should print out for him. If you know of any, please post the link > or email them directly to me at gimpygal(at)hotmail.com (Please note > that this is a different email address than the one I use for this > group... I have trouble opening attachemnts with my yahoo account > sometimes). Thanks!!!! > > -- as a chiari advocate /peer and retired nurse that the ASAP neurosurgeons kindly nurtured along in learning in debth since they knew I particpate in the wacma and asap suport groups endevoring to be of help to folks learning the impacts of acm /sm ect . The've spent hours - until the WEEE hours some years - LOL -- answering questions and debating FINE points too - tehehe . They awarded me the national volunteer of the year two years back now - telling me I'm an awsome mostly accurate advocate . So you can print this to show the doctor too - not to brag - I think I've got this right . At asap were told there are three warning signs /red flags we should take seriously -and ask our doctors to do so too immediatly . They should be " worked up " - and mannagment stragegy's taken . ( With the recent eds /chiari association being discoverd - I'd take just an eds diagnosis as a possible way that the neck /base of the skull area could easy suffer to much compression as a cause /and feel csf flow study ect . may be warrented too ) . First - cardiac irregularity . - It can be related to compression of the brainstem- sleep disturbance with apnea from both central and perifferal sources may be found as well - so both cardic and sleep study testing should be considered . Second - passing out or drop attacks . ( again cardiac can be involved in this one too ) - In me predecompresion - standing up from a couch or bed seated almost always led to seeing stars /hearing the ocean roar in my head - while I wobbled and OFTEN ploped back down - LOL ! -- what was serious though as my tonsils decended lower following a blow to the head and whiplash --- was passing out on the lawn -- comming too and stagering toward the house just to pass out again -- over and over -one day -- I finally made it to the couch - slept for hours despite a massive presure in my head falling asleap - till a friend arrived and took me to er . -- there my chiari WAS taken seriously - they kept me in a bed for a whole WEEK on monitoring - yikes ! the finally discharged me with referal to a neurosurgeon two months later -- and ASAP /angel flights swouped me to the experts soon there after -- But I had the third warning /red flag too -- Aspriation . If we swollow wrong- ( and both eds and chiari can have swollowing difficulties related ) -- we cough hard . My diaphram is a part of what glitches from higher presure in my head -- and it too heaves in muscle spasms over and over that wouldn't let me breath -- says I turn blue ! So--cardiac irregulaity including tachcardia like you discribe - and those palpitations /drops down to 50 as well -- are a symptom we SHOULD seek our physicans full evaluation and proable testing /interventions for -- it's NOT something to ignore - live with -- and you need to bring these email messages - stammer and hand em over asking the doctor help . It's fine /normal to feel shy /asking for help with the doctors - somehow many of us become fumbled tounged - me included . Having your peer's suport /urgings to get passed the brain/mouth /fummbles is a GOOD way to approach it =tehehe . By the way -- while this isn't an article to cite -- I sure do take a LONG time to explain my first thoughts huh -- someone needs to teach me better editing - LOL . -Hugs gal -feel better soon - and stay in resting mode till you see the doctor too please ! in Paradise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 > I have my annual check-up with my cardiologist on Monday, but it > will be my first appointment with him since my EDS diagnosis. I > printed the article on " EDS and the Heart " from the UK's EDS support > site, but I was wondering if anyone knew of any other articles I > should print out for him. If you know of any, please post the link > or email them directly to me at gimpygal(at)hotmail.com (Please note > that this is a different email address than the one I use for this > group... I have trouble opening attachemnts with my yahoo account > sometimes). Thanks!!!! > > -- as a chiari advocate /peer and retired nurse that the ASAP neurosurgeons kindly nurtured along in learning in debth since they knew I particpate in the wacma and asap suport groups endevoring to be of help to folks learning the impacts of acm /sm ect . The've spent hours - until the WEEE hours some years - LOL -- answering questions and debating FINE points too - tehehe . They awarded me the national volunteer of the year two years back now - telling me I'm an awsome mostly accurate advocate . So you can print this to show the doctor too - not to brag - I think I've got this right . At asap were told there are three warning signs /red flags we should take seriously -and ask our doctors to do so too immediatly . They should be " worked up " - and mannagment stragegy's taken . ( With the recent eds /chiari association being discoverd - I'd take just an eds diagnosis as a possible way that the neck /base of the skull area could easy suffer to much compression as a cause /and feel csf flow study ect . may be warrented too ) . First - cardiac irregularity . - It can be related to compression of the brainstem- sleep disturbance with apnea from both central and perifferal sources may be found as well - so both cardic and sleep study testing should be considered . Second - passing out or drop attacks . ( again cardiac can be involved in this one too ) - In me predecompresion - standing up from a couch or bed seated almost always led to seeing stars /hearing the ocean roar in my head - while I wobbled and OFTEN ploped back down - LOL ! -- what was serious though as my tonsils decended lower following a blow to the head and whiplash --- was passing out on the lawn -- comming too and stagering toward the house just to pass out again -- over and over -one day -- I finally made it to the couch - slept for hours despite a massive presure in my head falling asleap - till a friend arrived and took me to er . -- there my chiari WAS taken seriously - they kept me in a bed for a whole WEEK on monitoring - yikes ! the finally discharged me with referal to a neurosurgeon two months later -- and ASAP /angel flights swouped me to the experts soon there after -- But I had the third warning /red flag too -- Aspriation . If we swollow wrong- ( and both eds and chiari can have swollowing difficulties related ) -- we cough hard . My diaphram is a part of what glitches from higher presure in my head -- and it too heaves in muscle spasms over and over that wouldn't let me breath -- says I turn blue ! So--cardiac irregulaity including tachcardia like you discribe - and those palpitations /drops down to 50 as well -- are a symptom we SHOULD seek our physicans full evaluation and proable testing /interventions for -- it's NOT something to ignore - live with -- and you need to bring these email messages - stammer and hand em over asking the doctor help . It's fine /normal to feel shy /asking for help with the doctors - somehow many of us become fumbled tounged - me included . Having your peer's suport /urgings to get passed the brain/mouth /fummbles is a GOOD way to approach it =tehehe . By the way -- while this isn't an article to cite -- I sure do take a LONG time to explain my first thoughts huh -- someone needs to teach me better editing - LOL . -Hugs gal -feel better soon - and stay in resting mode till you see the doctor too please ! in Paradise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 > , > > I have different articles for you and have forwarded them to you privately. > I hope they help you. They are attachments, there is no other way to send > them... > > Jill Sorry to butt in, would it be possible for you to send those articles to me as well please? Many Thanks, Estelle xx estelle@... Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.