Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Bilateral disease is operable but only if all else has failed to control BP and K. Taking both out, and I (my team) has done this several times improves the BP but introduces 's disease in its place. This was in the days when we did not have may HTN drugs and no Inspra May your pressure be low!  CE Grim BS, MS, MD High Blood Pressure Consulting Senior Consultant to Shared Care Research and Education Consulting Inc.(sharedcareinc.com) Clinical Professor of Internal Medicine Medical and Cardiology Medical College of Wisconsin Board certified in Internal Med, Geriatrics and Hypertension. Interests: 1. Difficult to control high blood pressure. 2. The effect of recent evolutionary forces on high blood pressure in human populations. 3. Improving blood pressure measurement in the office and out. On Jan 11, 2009, at 8:42 PM, Carol Christie wrote: > Hi Sue > Thanks for your response. I know that the results of AVS will > determine > whether or not the condition is bilateral/unilateral and therefore > operable or not. > I guess I'm asking others how they decided to proceed given that there > seem to be no clear cut solutions. > Carol > > marysue hopper wrote: > > > > Carol > > > > Having an AVS doesn't mean having an adrenolectomy. I have both my > > adrenal glands, bloated and ineffective as they are, and I've had > AVS. > > > > I say go for it if your Dr recommends the test. Having a > diagnosis to > > know what's wrong is important - it's the starting point for healing > > and treatment. :-) > > > > You can then get the help you need, like I did in this forum - I'm > > finally starting to feel right, since beginning the DASH diet. > > > > Good luck > > Sue > > > > ________________________________ > > From: Carol Christie <carolch@... <mailto:carolch% > 40gil.com.au>> > > hyperaldosteronism > > <mailto:hyperaldosteronism%40> > > Sent: Monday, 12 January, 2009 2:06:59 AM > > Subject: AVS dilemma > > > > I would really appreciate some advice/opinion on this. > > I had an AVS done in 2004 - results inconclusive. Since then I > have been > > taking various medications, but mainly and currently spiro(50mg) and > > isoptin(240mg) . BP averages about 145/85. I am more often than not > > feeling weak, tired, brain fogged, and generally unwell. I do > maintain a > > minimal salt diet. > > In deciding about whether to go with another AVS, things swirl > around in > > my mind - > > > > * memory of people saying that after adrenolectomy, the other > > adrenal eventually overproduced aldosterone > > * reading that aldo is often produced from non-adrenal sites > > > > I'd welcome your comments. > > Carol > > > > > > Get the world & #39;s best email - http://nz.mail./ > > <http://nz.mail./> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Thanks Debi. Can you give me the doctors name, address, etc.? We should keep a database of good ones. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of moonium@... Val, I had mine done here in Knoxville, TN at a hospital. He kept me semi-awake but sedated during the process. It was done outpatient. Within a week, I was having my surgery. Good luck to you! Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Thanks Debi. Can you give me the doctors name, address, etc.? We should keep a database of good ones. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of moonium@... Val, I had mine done here in Knoxville, TN at a hospital. He kept me semi-awake but sedated during the process. It was done outpatient. Within a week, I was having my surgery. Good luck to you! Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 As AVS carries some risk I want to be certain I have exhausted all other Rxs before doing it. I would recommend your Drs consider increasing sprio or try Inspra and document that you are DASHing by doing 24 hr urine Na and K. May your pressure be low!  CE Grim BS, MS, MD High Blood Pressure Consulting Senior Consultant to Shared Care Research and Education Consulting Inc.(sharedcareinc.com) Clinical Professor of Internal Medicine Medical and Cardiology Medical College of Wisconsin Board certified in Internal Med, Geriatrics and Hypertension. Interests: 1. Difficult to control high blood pressure. 2. The effect of recent evolutionary forces on high blood pressure in human populations. 3. Improving blood pressure measurement in the office and out. On Jan 12, 2009, at 8:54 PM, Carol Christie wrote: > Hi Dr Grim, do you mean more spiro rather than an AVS at this stage? > Carol > > Clarence Grim wrote: > > > > I have never seen a of with aldo being produced from non adreal site > > but they are reported > > AVS does not help with this > > I would recommend more spiro or Inspra > > > > Sent from my iPhone > > > > CE Grim MD > > Specializing in Difficult > > Hypertension > > > > On Jan 11, 2009, at 10:10 AM, marysue hopper > > <marysuehopper@... <mailto:marysuehopper%40.co.nz>> > wrote: > > > > > Carol > > > > > > Having an AVS doesn't mean having an adrenolectomy. I have both my > > > adrenal glands, bloated and ineffective as they are, and I've > had AVS. > > > > > > I say go for it if your Dr recommends the test. Having a diagnosis > > > to know what's wrong is important - it's the starting point for > > > healing and treatment. :-) > > > > > > You can then get the help you need, like I did in this forum - I'm > > > finally starting to feel right, since beginning the DASH diet. > > > > > > Good luck > > > Sue > > > > > > ________________________________ > > > From: Carol Christie <carolch@... <mailto:carolch% > 40gil.com.au>> > > > hyperaldosteronism > > <mailto:hyperaldosteronism%40> > > > Sent: Monday, 12 January, 2009 2:06:59 AM > > > Subject: AVS dilemma > > > > > > I would really appreciate some advice/opinion on this. > > > I had an AVS done in 2004 - results inconclusive. Since then I > have > > > been > > > taking various medications, but mainly and currently spiro > (50mg) and > > > isoptin(240mg) . BP averages about 145/85. I am more often than > not > > > feeling weak, tired, brain fogged, and generally unwell. I do > > > maintain a > > > minimal salt diet. > > > In deciding about whether to go with another AVS, things swirl > > > around in > > > my mind - > > > > > > * memory of people saying that after adrenolectomy, the other > > > adrenal eventually overproduced aldosterone > > > * reading that aldo is often produced from non-adrenal sites > > > > > > I'd welcome your comments. > > > Carol > > > > > > > > > Get the world & #39;s best email - http://nz.mail./ > > <http://nz.mail./> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 I can vouch for Dr. Cho, interventional radiologist at the University of Michigan. He said he'd done over 600 AVS. I'm going to upload the results of my AVS to the AVS folder on the group website. It seems like not many people have had them done successfully and it shows what a report should look like. I know Dr. Grim said they drew blood a few more times than was necessary but at least it was done and reported correctly. a From: Valarie <val@...> Subject: RE: AVS dilemma hyperaldosteronism Date: Tuesday, January 13, 2009, 12:51 AM Thanks Debi. Can you give me the doctors name, address, etc.? We should keep a database of good ones. Val From: hyperaldosteronism [mailto:hyperaldosteronism] On Behalf Of mooniumaol (DOT) com Val, I had mine done here in Knoxville, TN at a hospital. He kept me semi-awake but sedated during the process. It was done outpatient. Within a week, I was having my surgery. Good luck to you! Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 I am scheduled to go into hospital next Sunday. I thought I'd be in for the second AVS. I have since found out that is not the case. I emailed with these questions of Dr Stowasser - 1. at my consultation, I thought I was to be admitted for an AVS. What is the proposed timing of this? 2. what is the exact purpose of forthcoming hospitalisation? 3. I have reduced dosage of spiro to 50mg per day. If I have to cease this medication, for how long will I not be taking it? 4. Why is it considered necessary to be off spiro for an AVS, 5. do I come off all medication including verapamil? *The responses I received today were - * 1. The AVS could be in a few months depending on how long it takes for your aldosterone/renin ratio to increase after the spironolactone has been ceased 2. To reduce your spiro and monitor your blood and BP under controlled circumstances as well as update routine blood pressure investigations 3-5 Stowasser will explain everything and discuss in depth on Monday morning in the ward during his round. Dr Grim, I really don't understand why I would have to be off spiro for perhaps a few months. I feel very apprehensive about this. I would appreciate your thoughts. Carol Clarence Grim wrote: > > As AVS carries some risk I want to be certain I have exhausted all > other Rxs before doing it. > > I would recommend your Drs consider increasing sprio or try Inspra > and document that you are DASHing by doing 24 hr urine Na and K. > > May your pressure be low! > > ? > > CE Grim BS, MS, MD > > High Blood Pressure Consulting > > Senior Consultant to Shared Care Research and Education Consulting > Inc.(sharedcareinc.com) > > Clinical Professor of Internal Medicine Medical and Cardiology > Medical College of Wisconsin > > Board certified in Internal Med, Geriatrics and Hypertension. > > Interests: > 1. Difficult to control high blood pressure. > 2. The effect of recent evolutionary forces on high blood pressure > in human populations. > 3. Improving blood pressure measurement in the office and out. > > On Jan 12, 2009, at 8:54 PM, Carol Christie wrote: > > > Hi Dr Grim, do you mean more spiro rather than an AVS at this stage? > > Carol > > > > Clarence Grim wrote: > > > > > > I have never seen a of with aldo being produced from non adreal site > > > but they are reported > > > AVS does not help with this > > > I would recommend more spiro or Inspra > > > > > > Sent from my iPhone > > > > > > CE Grim MD > > > Specializing in Difficult > > > Hypertension > > > > > > On Jan 11, 2009, at 10:10 AM, marysue hopper > > > <marysuehopper@... <mailto:marysuehopper%40.co.nz> > <mailto:marysuehopper%40.co.nz>> > > wrote: > > > > > > > Carol > > > > > > > > Having an AVS doesn't mean having an adrenolectomy. I have both my > > > > adrenal glands, bloated and ineffective as they are, and I've > > had AVS. > > > > > > > > I say go for it if your Dr recommends the test. Having a diagnosis > > > > to know what's wrong is important - it's the starting point for > > > > healing and treatment. :-) > > > > > > > > You can then get the help you need, like I did in this forum - I'm > > > > finally starting to feel right, since beginning the DASH diet. > > > > > > > > Good luck > > > > Sue > > > > > > > > ________________________________ > > > > From: Carol Christie <carolch@... > <mailto:carolch%40gil.com.au> <mailto:carolch% > > 40gil.com.au>> > > > > hyperaldosteronism > <mailto:hyperaldosteronism%40> > > > <mailto:hyperaldosteronism%40> > > > > Sent: Monday, 12 January, 2009 2:06:59 AM > > > > Subject: AVS dilemma > > > > > > > > I would really appreciate some advice/opinion on this. > > > > I had an AVS done in 2004 - results inconclusive. Since then I > > have > > > > been > > > > taking various medications, but mainly and currently spiro > > (50mg) and > > > > isoptin(240mg) . BP averages about 145/85. I am more often than > > not > > > > feeling weak, tired, brain fogged, and generally unwell. I do > > > > maintain a > > > > minimal salt diet. > > > > In deciding about whether to go with another AVS, things swirl > > > > around in > > > > my mind - > > > > > > > > * memory of people saying that after adrenolectomy, the other > > > > adrenal eventually overproduced aldosterone > > > > * reading that aldo is often produced from non-adrenal sites > > > > > > > > I'd welcome your comments. > > > > Carol > > > > > > > > > > > > Get the world & #39;s best email - http://nz.mail./ > <http://nz.mail./> > > > <http://nz.mail./ <http://nz.mail./>> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 The adrenal gland seems to store spiro in what are called spironolactone bodies in some folks and make take some time to get it washed out. Not really well studied. They will be keeping a close eye on your BP and doing state of the art testing. Tell Dr. S and team I said hello. Also Dr. Gordon if he shows up. Ask them if they are looking at the use of the DASH diet on helping to control BP in PA? If not why not? You will likely meet other pts with PA so tell them about our site. Keep us posted. May your pressure be low!  CE Grim BS, MS, MD High Blood Pressure Consulting Senior Consultant to Shared Care Research and Education Consulting Inc.(sharedcareinc.com) Clinical Professor of Internal Medicine Medical and Cardiology Medical College of Wisconsin Board certified in Internal Med, Geriatrics and Hypertension. Interests: 1. Difficult to control high blood pressure. 2. The effect of recent evolutionary forces on high blood pressure in human populations. 3. Improving blood pressure measurement in the office and out. On Jan 15, 2009, at 4:33 AM, Carol Christie wrote: > I am scheduled to go into hospital next Sunday. I thought I'd be in > for > the second AVS. I have since found out that is not the case. > I emailed with these questions of Dr Stowasser - > > 1. at my consultation, I thought I was to be admitted for an AVS. > What is the proposed timing of this? > 2. what is the exact purpose of forthcoming hospitalization? > 3. I have reduced dosage of spiro to 50mg per day. If I have to cease > this medication, for how long will I not be taking it? > 4. Why is it considered necessary to be off spiro for an AVS, > 5. do I come off all medication including verapamil? > > *The responses I received today were - * > > 1. The AVS could be in a few months depending on how long it takes > for your aldosterone/renin ratio to increase after the > spironolactone has > been ceased > 2. To reduce your spiro and monitor your blood and BP under > controlled circumstances as well as update routine blood pressure > investigations > 3-5 Stowasser will explain everything and discuss in depth > on Monday morning in the ward during his round. > > > Dr Grim, I really don't understand why I would have to be off spiro > for perhaps a few months. I feel very apprehensive about this. I > would appreciate your thoughts. > > Carol > > Clarence Grim wrote: > > > > As AVS carries some risk I want to be certain I have exhausted all > > other Rxs before doing it. > > > > I would recommend your Drs consider increasing sprio or try Inspra > > and document that you are DASHing by doing 24 hr urine Na and K. > > > > May your pressure be low! > > > > ? > > > > CE Grim BS, MS, MD > > > > High Blood Pressure Consulting > > > > Senior Consultant to Shared Care Research and Education Consulting > > Inc.(sharedcareinc.com) > > > > Clinical Professor of Internal Medicine Medical and Cardiology > > Medical College of Wisconsin > > > > Board certified in Internal Med, Geriatrics and Hypertension. > > > > Interests: > > 1. Difficult to control high blood pressure. > > 2. The effect of recent evolutionary forces on high blood pressure > > in human populations. > > 3. Improving blood pressure measurement in the office and out. > > > > On Jan 12, 2009, at 8:54 PM, Carol Christie wrote: > > > > > Hi Dr Grim, do you mean more spiro rather than an AVS at this > stage? > > > Carol > > > > > > Clarence Grim wrote: > > > > > > > > I have never seen a of with aldo being produced from non > adreal site > > > > but they are reported > > > > AVS does not help with this > > > > I would recommend more spiro or Inspra > > > > > > > > Sent from my iPhone > > > > > > > > CE Grim MD > > > > Specializing in Difficult > > > > Hypertension > > > > > > > > On Jan 11, 2009, at 10:10 AM, marysue hopper > > > > <marysuehopper@... <mailto:marysuehopper%40.co.nz> > > <mailto:marysuehopper%40.co.nz>> > > > wrote: > > > > > > > > > Carol > > > > > > > > > > Having an AVS doesn't mean having an adrenolectomy. I have > both my > > > > > adrenal glands, bloated and ineffective as they are, and I've > > > had AVS. > > > > > > > > > > I say go for it if your Dr recommends the test. Having a > diagnosis > > > > > to know what's wrong is important - it's the starting point > for > > > > > healing and treatment. :-) > > > > > > > > > > You can then get the help you need, like I did in this > forum - I'm > > > > > finally starting to feel right, since beginning the DASH diet. > > > > > > > > > > Good luck > > > > > Sue > > > > > > > > > > ________________________________ > > > > > From: Carol Christie <carolch@... > > <mailto:carolch%40gil.com.au> <mailto:carolch% > > > 40gil.com.au>> > > > > > hyperaldosteronism > > <mailto:hyperaldosteronism%40> > > > > <mailto:hyperaldosteronism%40> > > > > > Sent: Monday, 12 January, 2009 2:06:59 AM > > > > > Subject: AVS dilemma > > > > > > > > > > I would really appreciate some advice/opinion on this. > > > > > I had an AVS done in 2004 - results inconclusive. Since then I > > > have > > > > > been > > > > > taking various medications, but mainly and currently spiro > > > (50mg) and > > > > > isoptin(240mg) . BP averages about 145/85. I am more often > than > > > not > > > > > feeling weak, tired, brain fogged, and generally unwell. I do > > > > > maintain a > > > > > minimal salt diet. > > > > > In deciding about whether to go with another AVS, things swirl > > > > > around in > > > > > my mind - > > > > > > > > > > * memory of people saying that after adrenolectomy, the other > > > > > adrenal eventually overproduced aldosterone > > > > > * reading that aldo is often produced from non-adrenal sites > > > > > > > > > > I'd welcome your comments. > > > > > Carol > > > > > > > > > > > > > > > Get the world & #39;s best email - http://nz.mail./ > > <http://nz.mail./> > > > > <http://nz.mail./ <http://nz.mail./>> > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 Carol, if it were me, I'd be appreciative of the medical care. I have seen my endo twice about PA. The second time was so I could get her signature on a genetic testing form. She was negative about my having it even as I paid for it myself. Certainly, I didn't ask her or the insurance to pay for it. When my husband was hearing skipped heart beats, endo phoned in metoprolol for me. She assumed my non-physician husband had made the correct diagnosis. Or, maybe she didn't care. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Carol Christie I am scheduled to go into hospital next Sunday. I thought I'd be in for the second AVS. I have since found out that is not the case. I emailed with these questions of Dr Stowasser - 1. at my consultation, I thought I was to be admitted for an AVS. What is the proposed timing of this? 2. what is the exact purpose of forthcoming hospitalisation? 3. I have reduced dosage of spiro to 50mg per day. If I have to cease this medication, for how long will I not be taking it? 4. Why is it considered necessary to be off spiro for an AVS, 5. do I come off all medication including verapamil? *The responses I received today were - * 1. The AVS could be in a few months depending on how long it takes for your aldosterone/renin ratio to increase after the spironolactone has been ceased 2. To reduce your spiro and monitor your blood and BP under controlled circumstances as well as update routine blood pressure investigations 3-5 Stowasser will explain everything and discuss in depth on Monday morning in the ward during his round. Dr Grim, I really don't understand why I would have to be off spiro for perhaps a few months. I feel very apprehensive about this. I would appreciate your thoughts. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 More likely skipping related to low K would be my guess Just read a new report on eplerenone in Drug resit HTN. Started at 50 per day added to 3-4 other drugs then 50 was added (am & pm) with stri With strikingly better BP control Sent from my iPhone CE Grim MD Specializing in Difficult Hypertension On Jan 15, 2009, at 2:25 PM, Valarie <val@...> wrote: > Carol, if it were me, I'd be appreciative of the medical care. I > have seen > my endo twice about PA. The second time was so I could get her > signature on > a genetic testing form. She was negative about my having it even as > I paid > for it myself. Certainly, I didn't ask her or the insurance to pay > for it. > When my husband was hearing skipped heart beats, endo phoned in > metoprolol > for me. She assumed my non-physician husband had made the correct > diagnosis. Or, maybe she didn't care. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of Carol > Christie > > I am scheduled to go into hospital next Sunday. I thought I'd be in > for > the second AVS. I have since found out that is not the case. > I emailed with these questions of Dr Stowasser - > > 1. at my consultation, I thought I was to be admitted for an AVS. > What is the proposed timing of this? > 2. what is the exact purpose of forthcoming hospitalisation? > 3. I have reduced dosage of spiro to 50mg per day. If I have to cease > this medication, for how long will I not be taking it? > 4. Why is it considered necessary to be off spiro for an AVS, > 5. do I come off all medication including verapamil? > > *The responses I received today were - * > > 1. The AVS could be in a few months depending on how long it takes > for your aldosterone/renin ratio to increase after the > spironolactone has > been ceased > 2. To reduce your spiro and monitor your blood and BP under > controlled circumstances as well as update routine blood pressure > investigations > 3-5 Stowasser will explain everything and discuss in depth > on Monday morning in the ward during his round. > > Dr Grim, I really don't understand why I would have to be off spiro > for > perhaps a few months. I feel very apprehensive about this. I would > appreciate your thoughts. > > Carol > > Quote Link to comment Share on other sites More sharing options...
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