Guest guest Posted July 7, 2012 Report Share Posted July 7, 2012 PEOPLE DO NOT DIE ON THE TABLE EVERYDAY BY HAVING AVS! AVS is expensive and since you're in an HMO, I'm sure they wouldn't want to spend that kind of money. Where are aldo and renin levels, with normal bands? It goes without saying that getting an adrenalectomy without first having AVS is very scary. If your surgeon and radiologist are not well experienced, it's even scarier. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of amberhudson@...Sent: Saturday, July 07, 2012 11:25 PMhyperaldosteronism Subject: Approved for surgery I have a 2.6cm tumor on my right adrenal. My potassium was very low at around 3.4 for many years and my blood pressure over the last couple years kept going up and up. I live in Los Angeles area and have Kaiser Insurance. After doctor found tumor they started treating me with Inspra and blood pressure medication. My Potassium levels and blood pressure is in the normal range with medication. The doctor had not checked my renin/aldosterone levels before treating with me Inspra. I starting seeing an endocrinologist to advise about surgery. They said that AVS was very unsafe and that people die on the table all of the time with the procedure. So, they freaked me out into not wanting to consider that test. They ended up tapering me of Inspra for about a week and did the Renin/Aldosterone test. I was certain that was not enough time off Inspra to get an accurate reading but apparently it was. The doctor called me to advise my aldosterone was way higher than normal and that she was referring me to a surgeon. The surgeon is just a general surgeon and does not specialize in Adrenelcomy. So, I was wondering if this was ok to have a general surgeon do the surgery.... and also is it ok to remove one of the adrenal glands without testing the other one through AVS to make sure it is working properly? This is my first time posting to this group. I am new to all of this and have been really going at this alone. Thanks for any help. Amber Hudson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2012 Report Share Posted July 7, 2012 Oh goodness, I wish you had different insurance and could go to UCLA Medical Center, where I had my tumor tested and removed. What you've told us so far does not make me feel especially confident about the care you are receiving. How old are you? There is a school of thought that if you are under 40 and have a clearly visible tumor, then it's possible to skip AVS. Personally I would never consider skipping it. I had AVS not once, but twice, and while it's true that they do make you sign the standard " people die during this procedure " waiver, I never once felt like I was taking a huge risk. Certainly not the risk I would have been taking by having surgery without thorough testing first! As for the surgeon - personally I wouldn't consider anybody but an endocrine surgeon for this. Just my opinion and no basis for this other than the fact that endocrine surgeons will do adrenalectomies for numerous reason and are likely to be well experienced in this, whereas a general surgeon would not. If it's at all possible to appeal to Kaiser and go out of the HMO system for your care - after all, you have what conventional wisdom calls a " rare " disease (although many of us around here don't believe it to be so rare!) - and you would like some Los Angeles area recommendations for doctors well trained in PA, let me know and I can give you some contacts. -msmith1928 Left laparoscopic adrenalectomy 10/13/11 > > I have a 2.6cm tumor on my right adrenal. My potassium was very low at around 3.4 for many years and my blood pressure over the last couple years kept going up and up. I live in Los Angeles area and have Kaiser Insurance. After doctor found tumor they started treating me with Inspra and blood pressure medication. My Potassium levels and blood pressure is in the normal range with medication. The doctor had not checked my renin/aldosterone levels before treating with me Inspra. I starting seeing an endocrinologist to advise about surgery. They said that AVS was very unsafe and that people die on the table all of the time with the procedure. So, they freaked me out into not wanting to consider that test. They ended up tapering me of Inspra for about a week and did the Renin/Aldosterone test. I was certain that was not enough time off Inspra to get an accurate reading but apparently it was. The doctor called me to advise my aldosterone was way higher than normal and that she was referring me to a surgeon. The surgeon is just a general surgeon and does not specialize in Adrenelcomy. So, I was wondering if this was ok to have a general surgeon do the surgery.... and also is it ok to remove one of the adrenal glands without testing the other one through AVS to make sure it is working properly? > > > This is my first time posting to this group. I am new to all of this and have been really going at this alone. Thanks for any help. > > Amber Hudson > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 Amber, my answer: NO, NO, NO! Between Val and msmith they have covered most of the questions. To do proper testing you would need to be off Inspra for 6 weeks. What other meds were you on? A tumor of 2.6 is above average, did they check cortisol and do you have any symptoms of Cushing's? Important to know before surgery because they my need to supplement steroids until your other adrenal kicks in. > > > > I have a 2.6cm tumor on my right adrenal. My potassium was very low at around 3.4 for many years and my blood pressure over the last couple years kept going up and up. I live in Los Angeles area and have Kaiser Insurance. After doctor found tumor they started treating me with Inspra and blood pressure medication. My Potassium levels and blood pressure is in the normal range with medication. The doctor had not checked my renin/aldosterone levels before treating with me Inspra. I starting seeing an endocrinologist to advise about surgery. They said that AVS was very unsafe and that people die on the table all of the time with the procedure. So, they freaked me out into not wanting to consider that test. They ended up tapering me of Inspra for about a week and did the Renin/Aldosterone test. I was certain that was not enough time off Inspra to get an accurate reading but apparently it was. The doctor called me to advise my aldosterone was way higher than normal and that she was referring me to a surgeon. The surgeon is just a general surgeon and does not specialize in Adrenelcomy. So, I was wondering if this was ok to have a general surgeon do the surgery.... and also is it ok to remove one of the adrenal glands without testing the other one through AVS to make sure it is working properly? > > > > > > This is my first time posting to this group. I am new to all of this and have been really going at this alone. Thanks for any help. > > > > Amber Hudson > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 Do you have your Renin and Aldo lab report? If so can you give us the numbers? > > I have a 2.6cm tumor on my right adrenal. My potassium was very low at around 3.4 for many years and my blood pressure over the last couple years kept going up and up. I live in Los Angeles area and have Kaiser Insurance. After doctor found tumor they started treating me with Inspra and blood pressure medication. My Potassium levels and blood pressure is in the normal range with medication. The doctor had not checked my renin/aldosterone levels before treating with me Inspra. I starting seeing an endocrinologist to advise about surgery. They said that AVS was very unsafe and that people die on the table all of the time with the procedure. So, they freaked me out into not wanting to consider that test. They ended up tapering me of Inspra for about a week and did the Renin/Aldosterone test. I was certain that was not enough time off Inspra to get an accurate reading but apparently it was. The doctor called me to advise my aldosterone was way higher than normal and that she was referring me to a surgeon. The surgeon is just a general surgeon and does not specialize in Adrenelcomy. So, I was wondering if this was ok to have a general surgeon do the surgery.... and also is it ok to remove one of the adrenal glands without testing the other one through AVS to make sure it is working properly? > > > This is my first time posting to this group. I am new to all of this and have been really going at this alone. Thanks for any help. > > Amber Hudson > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 How was Dx made without doing testing for renin/aldosterone? Why have surgery based on not having a Dx? > > I have a 2.6cm tumor on my right adrenal. My potassium was very low at around 3.4 for many years and my blood pressure over the last couple years kept going up and up. I live in Los Angeles area and have Kaiser Insurance. After doctor found tumor they started treating me with Inspra and blood pressure medication. My Potassium levels and blood pressure is in the normal range with medication. The doctor had not checked my renin/aldosterone levels before treating with me Inspra. I starting seeing an endocrinologist to advise about surgery. They said that AVS was very unsafe and that people die on the table all of the time with the procedure. So, they freaked me out into not wanting to consider that test. They ended up tapering me of Inspra for about a week and did the Renin/Aldosterone test. I was certain that was not enough time off Inspra to get an accurate reading but apparently it was. The doctor called me to advise my aldosterone was way higher than normal and that she was referring me to a surgeon. The surgeon is just a general surgeon and does not specialize in Adrenelcomy. So, I was wondering if this was ok to have a general surgeon do the surgery.... and also is it ok to remove one of the adrenal glands without testing the other one through AVS to make sure it is working properly? > > > This is my first time posting to this group. I am new to all of this and have been really going at this alone. Thanks for any help. > > Amber Hudson > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 Exactly. How many on here have been told something ignorant by their doctors like "the big one's don't overproduce" or "those adenoma's are too small" or "it's always the right side"? Something that is opinion and not correct. I suspect a few docs didn't read results right either and far too many have HTN long after removal of an adrenal gland. But....most who get it done right are pretty content it seems. From: Valarie <val@...>Subject: RE: Approved for surgeryhyperaldosteronism Date: Sunday, July 8, 2012, 12:57 AM PEOPLE DO NOT DIE ON THE TABLE EVERYDAY BY HAVING AVS! AVS is expensive and since you're in an HMO, I'm sure they wouldn't want to spend that kind of money. Where are aldo and renin levels, with normal bands? It goes without saying that getting an adrenalectomy without first having AVS is very scary. If your surgeon and radiologist are not well experienced, it's even scarier. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of amberhudson@...Sent: Saturday, July 07, 2012 11:25 PMhyperaldosteronism Subject: Approved for surgery I have a 2.6cm tumor on my right adrenal. My potassium was very low at around 3.4 for many years and my blood pressure over the last couple years kept going up and up. I live in Los Angeles area and have Kaiser Insurance. After doctor found tumor they started treating me with Inspra and blood pressure medication. My Potassium levels and blood pressure is in the normal range with medication. The doctor had not checked my renin/aldosterone levels before treating with me Inspra. I starting seeing an endocrinologist to advise about surgery. They said that AVS was very unsafe and that people die on the table all of the time with the procedure. So, they freaked me out into not wanting to consider that test. They ended up tapering me of Inspra for about a week and did the Renin/Aldosterone test. I was certain that was not enough time off Inspra to get an accurate reading but apparently it was. The doctor called me to advise my aldosterone was way higher than normal and that she was referring me to a surgeon. The surgeon is just a general surgeon and does not specialize in Adrenelcomy. So, I was wondering if this was ok to have a general surgeon do the surgery.... and also is it ok to remove one of the adrenal glands without testing the other one through AVS to make sure it is working properly? This is my first time posting to this group. I am new to all of this and have been really going at this alone. Thanks for any help. Amber Hudson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 Where are you? We need to get you do someone who knows what they are doing. Death during AVS must be very rare or is at least rarely reported. But always a possibility.CE Grim MDOn Jul 7, 2012, at 10:24 PM, amberhudson@... wrote: I have a 2.6cm tumor on my right adrenal. My potassium was very low at around 3.4 for many years and my blood pressure over the last couple years kept going up and up. I live in Los Angeles area and have Kaiser Insurance. After doctor found tumor they started treating me with Inspra and blood pressure medication. My Potassium levels and blood pressure is in the normal range with medication. The doctor had not checked my renin/aldosterone levels before treating with me Inspra. I starting seeing an endocrinologist to advise about surgery. They said that AVS was very unsafe and that people die on the table all of the time with the procedure. So, they freaked me out into not wanting to consider that test. They ended up tapering me of Inspra for about a week and did the Renin/Aldosterone test. I was certain that was not enough time off Inspra to get an accurate reading but apparently it was. The doctor called me to advise my aldosterone was way higher than normal and that she was referring me to a surgeon. The surgeon is just a general surgeon and does not specialize in Adrenelcomy. So, I was wondering if this was ok to have a general surgeon do the surgery.... and also is it ok to remove one of the adrenal glands without testing the other one through AVS to make sure it is working properly? This is my first time posting to this group. I am new to all of this and have been really going at this alone. Thanks for any help. Amber Hudson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 Well they tested the renin/aldosterone last week and it was high and this is when they made the dx and advised they would send me to a surgeon. They started tx me with Inspra once they did a CT and found the tumor along with my high BP and low potassium > > > > I have a 2.6cm tumor on my right adrenal. My potassium was very low at around 3.4 for many years and my blood pressure over the last couple years kept going up and up. I live in Los Angeles area and have Kaiser Insurance. After doctor found tumor they started treating me with Inspra and blood pressure medication. My Potassium levels and blood pressure is in the normal range with medication. The doctor had not checked my renin/aldosterone levels before treating with me Inspra. I starting seeing an endocrinologist to advise about surgery. They said that AVS was very unsafe and that people die on the table all of the time with the procedure. So, they freaked me out into not wanting to consider that test. They ended up tapering me of Inspra for about a week and did the Renin/Aldosterone test. I was certain that was not enough time off Inspra to get an accurate reading but apparently it was. The doctor called me to advise my aldosterone was way higher than normal and that she was referring me to a surgeon. The surgeon is just a general surgeon and does not specialize in Adrenelcomy. So, I was wondering if this was ok to have a general surgeon do the surgery.... and also is it ok to remove one of the adrenal glands without testing the other one through AVS to make sure it is working properly? > > > > > > This is my first time posting to this group. I am new to all of this and have been really going at this alone. Thanks for any help. > > > > Amber Hudson > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 Unfortunately my Endo did not give me the numbers. I wish I had them. She just called me and said my aldosterone was very high and that I had Primary Aldosteronism, > > > > I have a 2.6cm tumor on my right adrenal. My potassium was very low at around 3.4 for many years and my blood pressure over the last couple years kept going up and up. I live in Los Angeles area and have Kaiser Insurance. After doctor found tumor they started treating me with Inspra and blood pressure medication. My Potassium levels and blood pressure is in the normal range with medication. The doctor had not checked my renin/aldosterone levels before treating with me Inspra. I starting seeing an endocrinologist to advise about surgery. They said that AVS was very unsafe and that people die on the table all of the time with the procedure. So, they freaked me out into not wanting to consider that test. They ended up tapering me of Inspra for about a week and did the Renin/Aldosterone test. I was certain that was not enough time off Inspra to get an accurate reading but apparently it was. The doctor called me to advise my aldosterone was way higher than normal and that she was referring me to a surgeon. The surgeon is just a general surgeon and does not specialize in Adrenelcomy. So, I was wondering if this was ok to have a general surgeon do the surgery.... and also is it ok to remove one of the adrenal glands without testing the other one through AVS to make sure it is working properly? > > > > > > This is my first time posting to this group. I am new to all of this and have been really going at this alone. Thanks for any help. > > > > Amber Hudson > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 I have heard very good things about UCLA. I live about 20 minutes from there so it would be a good option from me. I am 29 years old. They said it was a pretty clear tumor. The system at Kaiser even to get as far as getting approved for surgery has been a nightmare. I have been getting DX for almost a year now. So many appointments. I am so happy to be approved for surgery and just want to feel better but I am worried. It seemed really odd to me to not do AVS. The surgeon is supposed to call me Monday or Tues so once I find out what he has planned I will let you know. I looked up the doctor they said was going to do it at Kaiser and couldnt find much on him except that he does General Surgery. I will find out if he does a lot of Endocrine surgeries. Im thinking I may have to wait even until next year and change my insurance to a PPO and get it done then. My husband and I really wanted to start to have kids and I wanted this all to be done so I wouldnt have to endure a high risk pregnacy. > > > > I have a 2.6cm tumor on my right adrenal. My potassium was very low at around 3.4 for many years and my blood pressure over the last couple years kept going up and up. I live in Los Angeles area and have Kaiser Insurance. After doctor found tumor they started treating me with Inspra and blood pressure medication. My Potassium levels and blood pressure is in the normal range with medication. The doctor had not checked my renin/aldosterone levels before treating with me Inspra. I starting seeing an endocrinologist to advise about surgery. They said that AVS was very unsafe and that people die on the table all of the time with the procedure. So, they freaked me out into not wanting to consider that test. They ended up tapering me of Inspra for about a week and did the Renin/Aldosterone test. I was certain that was not enough time off Inspra to get an accurate reading but apparently it was. The doctor called me to advise my aldosterone was way higher than normal and that she was referring me to a surgeon. The surgeon is just a general surgeon and does not specialize in Adrenelcomy. So, I was wondering if this was ok to have a general surgeon do the surgery.... and also is it ok to remove one of the adrenal glands without testing the other one through AVS to make sure it is working properly? > > > > > > This is my first time posting to this group. I am new to all of this and have been really going at this alone. Thanks for any help. > > > > Amber Hudson > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2012 Report Share Posted July 8, 2012 Amber, they are applying the standard protocol which calls for skipping the AVS if you are under 40, have PA and a tumor, HOWEVER, they have NOT confirmed that you have PA! You should go to our files and print the file " Aldosterone Causes of Hypertension " . It explains the confirmation process and what needs to happen for a good DX. (This is written by the doctors at NIH and would be a good education for your doctor so s/he doesn't ruin people's health! I did a 14 day protocol at NIH with them if you have any questions. > > > > > > I have a 2.6cm tumor on my right adrenal. My potassium was very low at around 3.4 for many years and my blood pressure over the last couple years kept going up and up. I live in Los Angeles area and have Kaiser Insurance. After doctor found tumor they started treating me with Inspra and blood pressure medication. My Potassium levels and blood pressure is in the normal range with medication. The doctor had not checked my renin/aldosterone levels before treating with me Inspra. I starting seeing an endocrinologist to advise about surgery. They said that AVS was very unsafe and that people die on the table all of the time with the procedure. So, they freaked me out into not wanting to consider that test. They ended up tapering me of Inspra for about a week and did the Renin/Aldosterone test. I was certain that was not enough time off Inspra to get an accurate reading but apparently it was. The doctor called me to advise my aldosterone was way higher than normal and that she was referring me to a surgeon. The surgeon is just a general surgeon and does not specialize in Adrenelcomy. So, I was wondering if this was ok to have a general surgeon do the surgery.... and also is it ok to remove one of the adrenal glands without testing the other one through AVS to make sure it is working properly? > > > > > > > > > This is my first time posting to this group. I am new to all of this and have been really going at this alone. Thanks for any help. > > > > > > Amber Hudson > > > > > > Quote Link to comment Share on other sites More sharing options...
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