Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Always your choice in the game of u bet ur life. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension And unmeasurably low renin & low potassium & seriously high bp (with sudden onset within the last 18 months), unresponsive to bp drugs & a 21mm mass on left adrenal....? Still leaning towards skipping AVS and just taking a punt on that mass being the cause. H > > > > > > > > > > > > > > > > > > > > > > > > > By the information in this link. Any one less then 40 and > > > > > > > > > > tests show > > > > > > > > > > > > > they have PA has CT done to see if there is a tumor. If tumor > > > > > > > > > > shows > > > > > > > > > > > > > automaticiy have it removed with out doing AVS. > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 No much food long term follow up on PET Scans that I know of. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension A few days ago someone posted that they had AVS done and said the side the CT scan showed as having the tumor was not the side that was making to much Aldo. Not sure how old they was when CT was done. Some are doing PET scans as they do seem to a lot better then CT scan. might want to research it PET scans are as good as AVS. > > > > > > > > > > > > > > > > > > > > > > > > How much less? > > > > > > > > > > > > > > > > > > > > > > > > --- In hyperaldo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 There are rare reports of deAth during/after Adrenal surgery. But then you can get killed walking across the street. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension "in the game of u bet ur life" ??? Isn't it a game of "u bet ur tumorus adrenal gland" - at least I don't think you want to escellate it to life! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > By the information in this link. Any one less then 40 and > > > > > > > > > > > > tests show > > > > > > > > > > > > > > > they have PA has CT done to see if there is a tumor. If tumor > > > > > > > > > > > > shows > > > > > > > > > > > > > > > automaticiy have it removed with out doing AVS. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Please send us the reference on PET scanning. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension A few days ago someone posted that they had AVS done and said the side the CT scan showed as having the tumor was not the side that was making to much Aldo. Not sure how old they was when CT was done. Some are doing PET scans as they do seem to a lot better then CT scan. might want to research it PET scans are as good as AVS. > > > > > > > > > > > > > > > > > > > > > > > > How much less? > > > > > > > > > > > > > > > > > > > > > > > > --- In hyperaldo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Read the Endo guidelines for detailed references. Or do a pubmed. My task is to try to save busy people/patients time and direct them to th sources so they can make their own analysis when they want to. Otherwise I get paid for my expertise. I offer a $500 one time charge for one year accessmto my detailed expertise. Unlimited access to my expertise by phone or email and Skype for you and your team to get them up to steam. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Sorry but my job as a patient is to ask questions of any doctor - and you seem to actively encourage that of any of us visiting our regular consultants. Unfortunately as a newbie, I have no idea what your 40 years experience covers (side suggestion - it might be useful to have profiles of all the experts that contribute to this site somewhere - unless I've missed them in the morass of files/links/database etc.). So despite your wealth of experience, I still think it's not helpful to make a generalised statement such as 'Yep and the chances of cure are much less than if you have AVS done.' without some reference to where that data came from, who has researched into it, that type of thing. Presumably all stuff that you know off the top of your head as the expert in your field. Hester > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hester, First, everyone has to make this decision for > > > > > > > > > > > themself. I recently explained on this site how I made my > > > > > > > > decision. > > > > > > > > > > > I even provided some of the sites I researched to come to my > > > > > > > > > > > conclusion. Rather than ask you to trust me, I suggest you visit > > > > > > > > > > > this site: > > > > > > > > > > > > > > http://www.endocrinesurgery.org/patient_education/adrenal/hyperaldosteronism_diagnosis.shtml > > > > > > > > > > > (it is easiest to go to page 2) > > > > > > > > > > > > > > > > > > > > > > > > > > > > Marie, you might do a quick review, Remember THE 40 YEAR > > > > > > > > OLD > > > > > > > > > > > TEST? I believe somebody was over 40! (I draw the conclision > > > > > > > > that > > > > > > > > > > > "us old farts" like to grow non-functioning adnomas just keep > > > > > > > > the > > > > > > > > > > > doctors employed! ;>) > > > > > > > > > > > > > > > > > > > > > > > > > > > > Good Luck, Keep us posted, we care > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Will upload it again as I have some new pubs to add. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Dr Grim's CURRICULUM VITAE used to be in the files but doesn't seem to be ther now. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Again, I want to make sure you know that I have no ownership > > > > > > > > > in > > > > > > > > > > > > this decision so you do what you feel is best for you. I only > > > > > > > > > hope I > > > > > > > > > > > > can provide you some good unbiased information to help you > > > > > > > > > with the > > > > > > > > > > > > process. > > > > > > > > > > > > > > > > > > > > > > > > > > I can tell you I had a few years writing statistical > > > > > > > > > programs for > > > > > > > > > > > > a large insurance company so I am pretty good at figuring out > > > > > > > > > how to > > > > > > > > > > > > "work the numbers". The group that came up with that chart I > > > > > > > > > > > > provided you apparently certify all the Endocrine Surgeons of > > > > > > > > > North > > > > > > > > > > > > and South America as well as some international countries, > > > > > > > > > > > > trustworthy I guess! > > > > > > > > > > > > > > > > > > > > > > > > > > To the numbers: What is the distribution of tumors, by age? > > > > > > > > > (Us > > > > > > > > > > > > older individuals have more time to grow extra parts!) I > > > > > > > > > personally > > > > > > > > > > > > am beginning to think this is important enough that I consider > > > > > > > > > any > > > > > > > > > > > > survey that can't or doesn't is ambigious at best! I know one > > > > > > > > > of our > > > > > > > > > > > > surveys asks age at first notification, it might be fun to > > > > > > > > > check it > > > > > > > > > > > > out. > > > > > > > > > > > > > > > > > > > > > > > > > > What is the risk of problems with the AVS? (Ruptured vein or > > > > > > > > > > > > inconclusive results = adrenal removal I believe.) What > > > > > > > > > happens if > > > > > > > > > > > > the one you rupture is the one you wanted to keep? Now you are > > > > > > > > > left > > > > > > > > > > > > with none! > > > > > > > > > > > > > > > > > > > > > > > > > > What do you do with the tumor if it isn't producing? The > > > > > > > > > > > > instructions I remember is scan every 6-12 mos. to ensure it > > > > > > > > > isn't > > > > > > > > > > > > growing and becomming maliginant. Assuming you are mid-life at > > > > > > > > > 40 > > > > > > > > > > > > that's 40 to 60 xrays, did somebody say radiation! > > > > > > > > > > > > > > > > > > > > > > > > > > I'm going to quit fot the night, I've probably said enough to > > > > > > > > > > > > start a good discussion. Besides, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Reason we need a good data base. Many do not fill in what we reeCommend you do when they come on line. Once they get better they seem to have better things to do. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Out of the 550+ members there should be many that had AVS. Not many have put this information in a file. With over 28000 postings would be a lot of work trying to find results of AVS. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My doctor just called with the results of last week's > > > > > > > > > > > > > > > > aldosterone suppresion test/oral sodium loading test. As > > > > > > > > > > > > > expected, > > > > > > > > > > > > > > > > my aldo was off the charts high, both serum and urine. (I can > > > > > > > > > > > > > post > > > > > > > > > > > > > > > > numbers when I have a hard copy in front of me, if anyone is > > > > > > > > > > > > > > > > interested.) The interesting thing my doctor observed was that > > > > > > > > > > > > > I did > > > > > > > > > > > > > > > > not excrete a lot of sodium - he believes it's because my diet > > > > > > > > > > > > > is > > > > > > > > > > > > > > > > very low sodium. (I believe it's still trapped in my body in the > > > > > > > > > > > > > > > > form of the extra 2 pounds I've been carrying around since the > > > > > > > > > > > > > test!) > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > This gives me the go-ahead for AVS, or, > > > > > > > > > > > > > interestingly, he > > > > > > > > > > > > > > > > said I could skip the AVS and have the adrenalectomy. I want > > > > > > > > > > > > > to be > > > > > > > > > > > > > > > > good and certain that the culprit is my left adrenal before > > > > > > > > > > > > > surgery, > > > > > > > > > > > > > > > > so I think I'm going through with the AVS first. I'm aware of > > > > > > > > > > > > > the > > > > > > > > > > > > > > > > high risk of inconclusive results, and the risks of the > > > > > > > > > > > > > procedure in > > > > > > > > > > > > > > > > general. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > This brings up two questions: how common is it to > > > > > > > > > > > > > skip the > > > > > > > > > > > > > > > > AVS entirely? I only heard of that recently from another member > > > > > > > > > > > > > > > > here; I had been under the impression that standard protocol > > > > > > > > > > > > > was AVS > > > > > > > > > > > > > > > > before surgery. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > And, long shot I know, but - anybody here have their > > > > > > > > > > > > > AVS > > > > > > > > > > > > > > > > done at UCLA? Or anywhere in the greater Los Angeles area? If > > > > > > > > > > > > > you > > > > > > > > > > > > > > > > have an interventional radiologist in the area that you'd > > > > > > > > > > > > > recommend, > > > > > > > > > > > > > > > > please let me know. Thanks! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > - msmith1928 > > > > > > > > > > > > > > > > > > > > > 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, > > > > > > > > > > > > > > > > aldosterone 42.3, renin 0.5, potassium <2.9 (when not taking > > > > > > > > > > > > > > > > supplements); 25mg spiro caused gynecomastia, no meds currently > > > > > > > > > > > > > > > > except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 I believe CT has better resolution. Depends on device being used. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Out of the 550+ members there should be many that had AVS. Not many have put this information in a file. With over 28000 postings would be a lot of work trying to find results of AVS. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My doctor just called with the results of last week's > > > > > > > > > > > > > > > > aldosterone suppresion test/oral sodium loading test. As > > > > > > > > > > > > > expected, > > > > > > > > > > > > > > > > my aldo was off the charts high, both serum and urine. (I can > > > > > > > > > > > > > post > > > > > > > > > > > > > > > > numbers when I have a hard copy in front of me, if anyone is > > > > > > > > > > > > > > > > interested.) The interesting thing my doctor observed was that > > > > > > > > > > > > > I did > > > > > > > > > > > > > > > > not excrete a lot of sodium - he believes it's because my diet > > > > > > > > > > > > > is > > > > > > > > > > > > > > > > very low sodium. (I believe it's still trapped in my body in the > > > > > > > > > > > > > > > > form of the extra 2 pounds I've been carrying around since the > > > > > > > > > > > > > test!) > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > This gives me the go-ahead for AVS, or, > > > > > > > > > > > > > interestingly, he > > > > > > > > > > > > > > > > said I could skip the AVS and have the adrenalectomy. I want > > > > > > > > > > > > > to be > > > > > > > > > > > > > > > > good and certain that the culprit is my left adrenal before > > > > > > > > > > > > > surgery, > > > > > > > > > > > > > > > > so I think I'm going through with the AVS first. I'm aware of > > > > > > > > > > > > > the > > > > > > > > > > > > > > > > high risk of inconclusive results, and the risks of the > > > > > > > > > > > > > procedure in > > > > > > > > > > > > > > > > general. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > This brings up two questions: how common is it to > > > > > > > > > > > > > skip the > > > > > > > > > > > > > > > > AVS entirely? I only heard of that recently from another member > > > > > > > > > > > > > > > > here; I had been under the impression that standard protocol > > > > > > > > > > > > > was AVS > > > > > > > > > > > > > > > > before surgery. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > And, long shot I know, but - anybody here have their > > > > > > > > > > > > > AVS > > > > > > > > > > > > > > > > done at UCLA? Or anywhere in the greater Los Angeles area? If > > > > > > > > > > > > > you > > > > > > > > > > > > > > > > have an interventional radiologist in the area that you'd > > > > > > > > > > > > > recommend, > > > > > > > > > > > > > > > > please let me know. Thanks! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > - msmith1928 > > > > > > > > > > > > > > > > > > > > > 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, > > > > > > > > > > > > > > > > aldosterone 42.3, renin 0.5, potassium <2.9 (when not taking > > > > > > > > > > > > > > > > supplements); 25mg spiro caused gynecomastia, no meds currently > > > > > > > > > > > > > > > > except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 The article sent from the Italian group (2009) operated on _~40 folks based on AVS and 65% were cured average 2.5 years later. In general the longer one follows up the pts the lower the cure. As I recall without AVS THE rate is 40%. I consider a 50% difference in cure rates significant but have not formally tested the numbers. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Sorry but my job as a patient is to ask questions of any doctor - and you seem to actively encourage that of any of us visiting our regular consultants. Unfortunately as a newbie, I have no idea what your 40 years experience covers (side suggestion - it might be useful to have profiles of all the experts that contribute to this site somewhere - unless I've missed them in the morass of files/links/database etc.). So despite your wealth of experience, I still think it's not helpful to make a generalised statement such as 'Yep and the chances of cure are much less than if you have AVS done.' without some reference to where that data came from, who has researched into it, that type of thing. Presumably all stuff that you know off the top of your head as the expert in your field. Hester > > > > > > > > > > > > > > > > > > > > > > > > > > , > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks for that link. It does support the advice I'm getting > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 There are no randomized trials comparing medical to surgical treatment on which to use to think about your answer. No one funds trials of surgery now. Hopefully Obama care will be able to do these sorts of trials which will save billions. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Can I assume from this that if you take the meds. route the Rx you get will be the same 2.5 yrs. later? Over time do you have to make any adjustments? I think I understand what the bare numbers are telling us but without delving into what might have chaged over time they may just be bare numbers! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Again, I want to make sure you know that I have no ownership > > > > > > > > > > in > > > > > > > > > > > > > this decision so you do what you feel is best for you. I only > > > > > > > > > > hope I > > > > > > > > > > > > > can provide you some good unbiased information to help you > > > > > > > > > > with the > > > > > > > > > > > > > process. > > > > > > > > > > > > > > > > > > > > > > > > > > > > I can tell you I had a few years writing statistical > > > > > > > > > > programs for > > > > > > > > > > > > > a large insurance company so I am pretty good at figuring out > > > > > > > > > > how to > > > > > > > > > > > > > "work the numbers". The group that came up with that chart I > > > > > > > > > > > > > provided you apparently certify all the Endocrine Surgeons of > > > > > > > > > > North > > > > > > > > > > > > > and South America as well as some international countries, > > > > > > > > > > > > > trustworthy I guess! > > > > > > > > > > > > > > > > > > > > > > > > > > > > To the numbers: What is the distribution of tumors, by age? > > > > > > > > > > (Us > > > > > > > > > > > > > older individuals have more time to grow extra parts!) I > > > > > > > > > > personally > > > > > > > > > > > > > am beginning to think this is important enough that I consider > > > > > > > > > > any > > > > > > > > > > > > > survey that can't or doesn't is ambigious at best! I know one > > > > > > > > > > of our > > > > > > > > > > > > > surveys asks age at first notification, it might be fun to > > > > > > > > > > check it > > > > > > > > > > > > > out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 I would guess I say 200 PT as an internist at a CBOC For 4 months. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension About how many PT did you see at the VA? This would real good information on % of possible PT with PA. Were you there as PCP or hypertension expert? > > > > > > > > > > My doctor just called with the results of last week's > > aldosterone suppresion test/oral sodium loading test. As expected, > > my aldo was off the charts high, both serum and urine. (I can post > > numbers when I have a hard copy in front of me, if anyone is > > interested.) The interesting thing my doctor observed was that I did > > not excrete a lot of sodium - he believes it's because my diet is > > very low sodium. (I believe it's still trapped in my body in the > > form of the extra 2 pounds I've been carrying around since the test!) > > > > > > > > > > This gives me the go-ahead for AVS, or, interestingly, he said > > I could skip the AVS and have the adrenalectomy. I want to be good > > and certain that the culprit is my left adrenal before surgery, so I > > think I'm going through with the AVS first. I'm aware of the high > > risk of inconclusive results, and the risks of the procedure in > > general. > > > > > > > > > > This brings up two questions: how common is it to skip the AVS > > entirely? I only heard of that recently from another member here; I > > had been under the impression that standard protocol was AVS before > > surgery. > > > > > > > > > > And, long shot I know, but - anybody here have their AVS done > > at UCLA? Or anywhere in the greater Los Angeles area? If you have an > > interventional radiologist in the area that you'd recommend, please > > let me know. Thanks! > > > > > > > > > > > > > > > - msmith1928 > > > > > 45, female, 5'3", 120 lbs, 1cm left adrenal nodule, > > aldosterone 42.3, renin 0.5, potassium <2.9 (when not taking > > supplements); 25mg spiro caused gynecomastia, no meds currently > > except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 I never say meds. I always say DASH and meds. Just as one should never say it is the aldosterone that causes all the problems. Without excess salt Aldo causes no problems. A number of our folks here have demonstrated this very nicely in their own PA lives and can answer your questions better than I can. My synthesis of 40 years of doing PA is think about surgery only if DASH + MCBs fail to control BP, K and Sx. One must document DASH compliance by urine sodium. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension Since Meds are your treatment of choice, what has been your experience? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Again, I want to make sure you know that I have no ownership > > > > > > > > > > > > in > > > > > > > > > > > > > > > this decision so you do what you feel is best for you. I only > > > > > > > > > > > > hope I > > > > > > > > > > > > > > > can provide you some good unbiased information to help you > > > > Quote Link to comment Share on other sites More sharing options...
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