Guest guest Posted July 4, 2012 Report Share Posted July 4, 2012 Hi All,Wow-thanks for all the feedback!I had the opportunity to talk with the pre-op nurse at the hospital where the AVS would be done. The doctor who would be doing it does approx. 4-5 per years. Yikes! The nurse said they don't do as many anymore as they used to be/c as "other technologies" have become more popular their popularity has waned. Doing it at NIH isn't an option. I live in Thousand Oaks, CA and my insurance will only let me go to this one hospital. Nice. I need to be brought up to speed on my lingo--what does HTN and MCB mean? No, a 24 hr urine sample hasn't been collected. BP hasn't been taken in both arms. I wasn't on any meds, other than my epilepsy meds (which don't cause any potassium variance) when my first diagnostic test was done that determined high aldosterone.Hmmmm, the plot thickens....Monika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2012 Report Share Posted July 4, 2012 I'd recommend talking to someone higher up the chain at your insurance carrier. You have a non-routine medical condition that requires special care. I had all of my testing and my surgery done through UCLA Medical Center in West Los Angeles, where they are highly familiar with PA and have an adrenal surgery division. Even so, I had to have my AVS done twice, as the first time it was not done correctly (not unusual, it happens). I'm going to guess that you have Kaiser for your insurance, in which case it might be near-impossible to go any place else. But if you have some other HMO, you may be able to go out of network - but it will take some persistence on your part. -msmith1928 Left laparoscopic adrenalectomy 10/13/11 > > Hi All, > Wow-thanks for all the feedback! > I had the opportunity to talk with the pre-op nurse at the hospital where the AVS would be done. The doctor who would be doing it does approx. 4-5 per years. Yikes! The nurse said they don't do as many anymore as they used to be/c as " other technologies " have become more popular their popularity has waned. Doing it at NIH isn't an option. I live in Thousand Oaks, CA and my insurance will only let me go to this one hospital. Nice. > I need to be brought up to speed on my lingo--what does HTN and MCB mean? > No, a 24 hr urine sample hasn't been collected. BP hasn't been taken in both arms. I wasn't on any meds, other than my epilepsy meds (which don't cause any potassium variance) when my first diagnostic test was done that determined high aldosterone. > Hmmmm, the plot thickens.... > Monika > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2012 Report Share Posted July 4, 2012 Did I miss something? Somebody has taken a large leap of faith to go from low K and marginal BP to PA and an AVS! A large majority of adrenal adenomas are non functioning and it sounds like they have not done any of the normal tests leading up to a confirmation. In fact I would be very surprised if NIH would even see/hear enough to even consider you (for one thing you would need to be off elperenone for a minimum of 6 weeks!) I would NOT proceed with the AVS based on what you have shared. If PA is confirmed after stopping meds to conform with standard procedures I would probably skip AVS if they can't provide a more experienced IR and proceed to ADx based on your age! (If AVS says it is the opposite adrenal will you have it removed and leave the tumor?) In fact, I wouldn't proceed anywhere unless they did a lot more to confirm, there are many reasons for low K. > > > Hi All, > > > > Wow-thanks for all the feedback! > > > > I had the opportunity to talk with the pre-op nurse at the hospital where the AVS would be done. The doctor who would be doing it does approx. 4-5 per years. Yikes! The nurse said they don't do as many anymore as they used to be/c as " other technologies " have become more popular their popularity has waned. Doing it at NIH isn't an option. I live in Thousand Oaks, CA and my insurance will only let me go to this one hospital. Nice. > > > > I need to be brought up to speed on my lingo-- > > what does HTN and MCB mean? > > > > No, a 24 hr urine sample hasn't been collected. BP hasn't been taken in both arms. I wasn't on any meds, other than my epilepsy meds (which don't cause any potassium variance) when my first diagnostic test was done that determined high aldosterone. > > > > Hmmmm, the plot thickens.... > > > > Monika > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2012 Report Share Posted July 5, 2012 Not all research is paid for by the government. > > HTN - hypertension > > MCB - mineralocortocoid blocker (spironolactone or Inspra) > > If NIH accepts you for a study, everything but travel to get there is paid > for by the government. > > What's that doc's success rate? > > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of Monika Del Bosque > > Wow-thanks for all the feedback! > > I had the opportunity to talk with the pre-op nurse at the hospital where > the AVS would be done. The doctor who would be doing it does approx. 4-5 > per years. Yikes! The nurse said they don't do as many anymore as they used > to be/c as " other technologies " have become more popular their popularity > has waned. Doing it at NIH isn't an option. I live in Thousand Oaks, CA and > my insurance will only let me go to this one hospital. Nice. > > I need to be brought up to speed on my lingo-- > > what does HTN and MCB mean? > > No, a 24 hr urine sample hasn't been collected. BP hasn't been taken in > both arms. I wasn't on any meds, other than my epilepsy meds (which don't > cause any potassium variance) when my first diagnostic test was done that > determined high aldosterone. > > Hmmmm, the plot thickens.... > > Monika > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2012 Report Share Posted July 5, 2012 Are you saying that the research that drug company's pay for isn't civilized medicine. How about the money that the Jerry Louis telathone raises for MD. > > > > > > HTN - hypertension > > > > > > MCB - mineralocortocoid blocker (spironolactone or Inspra) > > > > > > If NIH accepts you for a study, everything but travel to get there is paid > > > for by the government. > > > > > > What's that doc's success rate? > > > > > > > > > From: hyperaldosteronism > > > [mailto:hyperaldosteronism ] On Behalf Of Monika Del Bosque > > > > > > Wow-thanks for all the feedback! > > > > > > I had the opportunity to talk with the pre-op nurse at the hospital where > > > the AVS would be done. The doctor who would be doing it does approx. 4-5 > > > per years. Yikes! The nurse said they don't do as many anymore as they used > > > to be/c as " other technologies " have become more popular their popularity > > > has waned. Doing it at NIH isn't an option. I live in Thousand Oaks, CA and > > > my insurance will only let me go to this one hospital. Nice. > > > > > > I need to be brought up to speed on my lingo-- > > > > > > what does HTN and MCB mean? > > > > > > No, a 24 hr urine sample hasn't been collected. BP hasn't been taken in > > > both arms. I wasn't on any meds, other than my epilepsy meds (which don't > > > cause any potassium variance) when my first diagnostic test was done that > > > determined high aldosterone. > > > > > > Hmmmm, the plot thickens.... > > > > > > Monika > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2012 Report Share Posted July 9, 2012 Hi All,I got the opportunity to talk with the doctor who will be doing the AVS and ask her why AVS would be done before other tests like the ones people here had mentioned and I had researched, i.e. 24 hr urine, aldos/renin ratio, etc. She said those tests will give us further information about levels. Since it's confirmed from my CT scan that I have a tumor on my left adrenal (1.8cm), AVS is the way to find out if the tumor is the cause of my potassium and aldosterone levels being off. The other tests won't tell us that. She did remind me that if I don't want to entertain the idea of having an adrenalectomy, then maybe I don't want to do the AVS because that's what it's going to tell us--if I'm a good candidate for surgery. Also, since I am unable to tolerate taking K supplements and that is the reason I am taking Eplenerone at this time (Spira at 25mg/day messed up my gut too much and my hair started falling out) is to make me hold onto my K, I may become resistant to these drugs over time if I'm looking at taking them for a long time. I'm 39, and it would be a long time. I hate being on meds, so I have to say--if surgery could correct this and levels would go back to normal--I'd do it. Right now, BP is stable, but obviously (and as dr pointed out too) I have youth on my side still and HTN will become more and more of an issue the older I get with the issue I am facing. If the tumor isn't causing levels to be off, then I have to take meds the rest of my life no matter what.Levels: prior to Spiranolactone (I haven't gotten results back yet since switching to Eplerenone)K 2.8 mmol/L (it has been at 3.1/3.0 too)Sodium 142 mmol/LK(random urine) 66mmol/LAldos 31 ng/dLOn the first 30 days of being on Spira 25mg/day and a high K diet, my K levels went up to 3.7! First time it's been that high since the first low results I got last summer. I was pleased and so was nephrologist.*Scheduled to go in for AVS on Tuesday 7/10.What should I expect for recovering? Is it safe to be alone the day/night following the procedure?Thanks for all the feedback!Monika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2012 Report Share Posted July 9, 2012 You should expect to be on your back totally reclined for 2 hours with a bandaid where they inserted the cathes. They monitored the sites during this period at NIH anyway. After that I was up and around and " normal " (well, as normal as I was before the procedure!) They will probably not want you to drive that day due to anesthesia. I flew home from lnd to Vermont unassisted the next day. Removed the bandaids a couple days later and the only sign anything had happened was very slight bruising in the right side, he had a little trouble finding that side which probably caused it. No pain. No issues. I've had worse experiences removing a sliver! (Remember, I had probably the best IR in the country and he has an awesome team that has obviously done many together.) > > Hi All, > I got the opportunity to talk with the doctor who will be doing the AVS and ask her why AVS would be done before other tests like the ones people here had mentioned and I had researched, i.e. 24 hr urine, aldos/renin ratio, etc. She said those tests will give us further information about levels. Since it's confirmed from my CT scan that I have a tumor on my left adrenal (1.8cm), AVS is the way to find out if the tumor is the cause of my potassium and aldosterone levels being off. The other tests won't tell us that. She did remind me that if I don't want to entertain the idea of having an adrenalectomy, then maybe I don't want to do the AVS because that's what it's going to tell us--if I'm a good candidate for surgery. Also, since I am unable to tolerate taking K supplements and that is the reason I am taking Eplenerone at this time (Spira at 25mg/day messed up my gut too much and my hair started falling out) is to make me hold onto my K, I may > become resistant to these drugs over time if I'm looking at taking them for a long time. I'm 39, and it would be a long time. I hate being on meds, so I have to say--if surgery could correct this and levels would go back to normal--I'd do it. Right now, BP is stable, but obviously (and as dr pointed out too) I have youth on my side still and HTN will become more and more of an issue the older I get with the issue I am facing. If the tumor isn't causing levels to be off, then I have to take meds the rest of my life no matter what. > Levels: prior to Spiranolactone (I haven't gotten results back yet since switching to Eplerenone) > K 2.8 mmol/L (it has been at 3.1/3.0 too)Sodium 142 mmol/L > K(random urine) 66mmol/LAldos 31 ng/dL > On the first 30 days of being on Spira 25mg/day and a high K diet, my K levels went up to 3.7! First time it's been that high since the first low results I got last summer. I was pleased and so was nephrologist. > *Scheduled to go in for AVS on Tuesday 7/10.What should I expect for recovering? Is it safe to be alone the day/night following the procedure? > Thanks for all the feedback! > Monika > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2012 Report Share Posted July 9, 2012 Are you saying they haven't done blood test to see what aldo and renin levels are? This should always be done before AVS. > > Hi All, > I got the opportunity to talk with the doctor who will be doing the AVS and ask her why AVS would be done before other tests like the ones people here had mentioned and I had researched, i.e. 24 hr urine, aldos/renin ratio, etc. She said those tests will give us further information about levels. Since it's confirmed from my CT scan that I have a tumor on my left adrenal (1.8cm), AVS is the way to find out if the tumor is the cause of my potassium and aldosterone levels being off. The other tests won't tell us that. She did remind me that if I don't want to entertain the idea of having an adrenalectomy, then maybe I don't want to do the AVS because that's what it's going to tell us--if I'm a good candidate for surgery. Also, since I am unable to tolerate taking K supplements and that is the reason I am taking Eplenerone at this time (Spira at 25mg/day messed up my gut too much and my hair started falling out) is to make me hold onto my K, I may > become resistant to these drugs over time if I'm looking at taking them for a long time. I'm 39, and it would be a long time. I hate being on meds, so I have to say--if surgery could correct this and levels would go back to normal--I'd do it. Right now, BP is stable, but obviously (and as dr pointed out too) I have youth on my side still and HTN will become more and more of an issue the older I get with the issue I am facing. If the tumor isn't causing levels to be off, then I have to take meds the rest of my life no matter what. > Levels: prior to Spiranolactone (I haven't gotten results back yet since switching to Eplerenone) > K 2.8 mmol/L (it has been at 3.1/3.0 too)Sodium 142 mmol/L > K(random urine) 66mmol/LAldos 31 ng/dL > On the first 30 days of being on Spira 25mg/day and a high K diet, my K levels went up to 3.7! First time it's been that high since the first low results I got last summer. I was pleased and so was nephrologist. > *Scheduled to go in for AVS on Tuesday 7/10.What should I expect for recovering? Is it safe to be alone the day/night following the procedure? > Thanks for all the feedback! > Monika > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2012 Report Share Posted July 9, 2012 Interesting approach - I get your doctor's logic in proceeding straight to AVS, but one thing to keep in mind (and a BIG one that doctors tend to overlook) is that your insurance carrier might expect things to be done in a set way: the least expensive/complex tests first, in other words. If you don't have the results from ARR blood tests and saline suppression tests, they may find this a perfect loophole to turn down covering the costs of AVS. Which I have seen inflated to around $30,000! As for post-AVS care - I live alone and was alone after both of my AVS procedures, and it was fine. I could have easily gone back to work the next day each time. One cautionary note: before they release you from the hospital, I'd recommend making sure they monitor your K very thoroughly. Each time, mine dropped into the 2.x range - the hospital where mine was done will not release a patient with K under 3.8, so I was kept longer than the standard 2 hours or so of lying flat. Others here haven't been as fortunate, and have required post-AVS trips to he ER. > > Hi All, > I got the opportunity to talk with the doctor who will be doing the AVS and ask her why AVS would be done before other tests like the ones people here had mentioned and I had researched, i.e. 24 hr urine, aldos/renin ratio, etc. She said those tests will give us further information about levels. Since it's confirmed from my CT scan that I have a tumor on my left adrenal (1.8cm), AVS is the way to find out if the tumor is the cause of my potassium and aldosterone levels being off. The other tests won't tell us that. She did remind me that if I don't want to entertain the idea of having an adrenalectomy, then maybe I don't want to do the AVS because that's what it's going to tell us--if I'm a good candidate for surgery. Also, since I am unable to tolerate taking K supplements and that is the reason I am taking Eplenerone at this time (Spira at 25mg/day messed up my gut too much and my hair started falling out) is to make me hold onto my K, I may > become resistant to these drugs over time if I'm looking at taking them for a long time. I'm 39, and it would be a long time. I hate being on meds, so I have to say--if surgery could correct this and levels would go back to normal--I'd do it. Right now, BP is stable, but obviously (and as dr pointed out too) I have youth on my side still and HTN will become more and more of an issue the older I get with the issue I am facing. If the tumor isn't causing levels to be off, then I have to take meds the rest of my life no matter what. > Levels: prior to Spiranolactone (I haven't gotten results back yet since switching to Eplerenone) > K 2.8 mmol/L (it has been at 3.1/3.0 too)Sodium 142 mmol/L > K(random urine) 66mmol/LAldos 31 ng/dL > On the first 30 days of being on Spira 25mg/day and a high K diet, my K levels went up to 3.7! First time it's been that high since the first low results I got last summer. I was pleased and so was nephrologist. > *Scheduled to go in for AVS on Tuesday 7/10.What should I expect for recovering? Is it safe to be alone the day/night following the procedure? > Thanks for all the feedback! > Monika > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2012 Report Share Posted July 9, 2012 But it they haven't done blood aldo renin then sould the be doing AVS based just CT scan? > > > Hi All, > > > > I got the opportunity to talk with the doctor who will be doing the AVS and ask her why AVS would be done before other tests like the ones people here had mentioned and I had researched, i.e. 24 hr urine, aldos/renin ratio, etc. She said those tests will give us further information about levels. Since it's confirmed from my CT scan that I have a tumor on my left adrenal (1.8cm), AVS is the way to find out if the tumor is the cause of my potassium and aldosterone levels being off. The other tests won't tell us that. She did remind me that if I don't want to entertain the idea of having an adrenalectomy, then maybe I don't want to do the AVS because that's what it's going to tell us--if I'm a good candidate for surgery. Also, since I am unable to tolerate taking K supplements and that is the reason I am taking Eplenerone at this time (Spira at 25mg/day messed up my gut too much and my hair started falling out) is to make me hold onto my K, I may become resistant to these drugs over time if I'm looking at taking them for a long time. I'm 39, and it would be a long time. I hate being on meds, so I have to say--if surgery could correct this and levels would go back to normal--I'd do it. Right now, BP is stable, but obviously (and as dr pointed out too) I have youth on my side still and HTN will become more and more of an issue the older I get with the issue I am facing. If the tumor isn't causing levels to be off, then I have to take meds the rest of my life no matter what. > > > > Levels: prior to Spiranolactone > > (I haven't gotten results back yet since switching to Eplerenone) > > > > K 2.8 mmol/L (it has been at 3.1/3.0 too) > > Sodium 142 mmol/L > > > > K(random urine) 66mmol/L > > Aldos 31 ng/dL > > > > On the first 30 days of being on Spira 25mg/day and a high K diet, my K levels went up to 3.7! First time it's been that high since the first low results I got last summer. I was pleased and so was nephrologist. > > > > *Scheduled to go in for AVS on Tuesday 7/10. > > What should I expect for recovering? Is it safe to be alone the day/night following the procedure? > > > > Thanks for all the feedback! > > > > Monika > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2012 Report Share Posted July 9, 2012 Hi All, Thanks for feedback! Insurance has authorized AVS despite the other test being skipped. I have good insurance through my work, albeit an HMO. And what is ACTH DURING AVS? This way I know for tomorrow. My first links with the info. on the DASH diet are gone. How do I get them again? When I was Dx as celiac three years ago (runs in my family), I substituted my love of flaky pastries with a love of salty things. I can't say this helps my sodium/HTN. I tend to be a salt fiend now which obviously needs to change. Wish me luck tomorrow- Monika > > > Hi All, > > > > I got the opportunity to talk with the doctor who will be doing the AVS and ask her why AVS would be done before other tests like the ones people here had mentioned and I had researched, i.e. 24 hr urine, aldos/renin ratio, etc. She said those tests will give us further information about levels. Since it's confirmed from my CT scan that I have a tumor on my left adrenal (1.8cm), AVS is the way to find out if the tumor is the cause of my potassium and aldosterone levels being off. The other tests won't tell us that. She did remind me that if I don't want to entertain the idea of having an adrenalectomy, then maybe I don't want to do the AVS because that's what it's going to tell us--if I'm a good candidate for surgery. Also, since I am unable to tolerate taking K supplements and that is the reason I am taking Eplenerone at this time (Spira at 25mg/day messed up my gut too much and my hair started falling out) is to make me hold onto my K, I may become resistant to these drugs over time if I'm looking at taking them for a long time. I'm 39, and it would be a long time. I hate being on meds, so I have to say--if surgery could correct this and levels would go back to normal--I'd do it. Right now, BP is stable, but obviously (and as dr pointed out too) I have youth on my side still and HTN will become more and more of an issue the older I get with the issue I am facing. If the tumor isn't causing levels to be off, then I have to take meds the rest of my life no matter what. > > > > Levels: prior to Spiranolactone > > (I haven't gotten results back yet since switching to Eplerenone) > > > > K 2.8 mmol/L (it has been at 3.1/3.0 too) > > Sodium 142 mmol/L > > > > K(random urine) 66mmol/L > > Aldos 31 ng/dL > > > > On the first 30 days of being on Spira 25mg/day and a high K diet, my K levels went up to 3.7! First time it's been that high since the first low results I got last summer. I was pleased and so was nephrologist. > > > > *Scheduled to go in for AVS on Tuesday 7/10. > > What should I expect for recovering? Is it safe to be alone the day/night following the procedure? > > > > Thanks for all the feedback! > > > > Monika > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2012 Report Share Posted July 9, 2012 There is a menu box on the left. Click on Files and scroll down. Not sure what you are looking for but it should be there along with alot of other good info. Have a good day tomorrow, we'll all be looking for your results, it will take a few days to get them. > > > > > Hi All, > > > > > > I got the opportunity to talk with the doctor who will be doing the AVS and ask her why AVS would be done before other tests like the ones people here had mentioned and I had researched, i.e. 24 hr urine, aldos/renin ratio, etc. She said those tests will give us further information about levels. Since it's confirmed from my CT scan that I have a tumor on my left adrenal (1.8cm), AVS is the way to find out if the tumor is the cause of my potassium and aldosterone levels being off. The other tests won't tell us that. She did remind me that if I don't want to entertain the idea of having an adrenalectomy, then maybe I don't want to do the AVS because that's what it's going to tell us--if I'm a good candidate for surgery. Also, since I am unable to tolerate taking K supplements and that is the reason I am taking Eplenerone at this time (Spira at 25mg/day messed up my gut too much and my hair started falling out) is to make me hold onto my K, I may become resistant to these drugs over time if I'm looking at taking them for a long time. I'm 39, and it would be a long time. I hate being on meds, so I have to say--if surgery could correct this and levels would go back to normal--I'd do it. Right now, BP is stable, but obviously (and as dr pointed out too) I have youth on my side still and HTN will become more and more of an issue the older I get with the issue I am facing. If the tumor isn't causing levels to be off, then I have to take meds the rest of my life no matter what. > > > > > > Levels: prior to Spiranolactone > > > (I haven't gotten results back yet since switching to Eplerenone) > > > > > > K 2.8 mmol/L (it has been at 3.1/3.0 too) > > > Sodium 142 mmol/L > > > > > > K(random urine) 66mmol/L > > > Aldos 31 ng/dL > > > > > > On the first 30 days of being on Spira 25mg/day and a high K diet, my K levels went up to 3.7! First time it's been that high since the first low results I got last summer. I was pleased and so was nephrologist. > > > > > > *Scheduled to go in for AVS on Tuesday 7/10. > > > What should I expect for recovering? Is it safe to be alone the day/night following the procedure? > > > > > > Thanks for all the feedback! > > > > > > Monika > > > > > > Quote Link to comment Share on other sites More sharing options...
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