Guest guest Posted March 21, 2012 Report Share Posted March 21, 2012 I have several adenomas on both adrenals. I had AVS last Friday and am waiting to find out if one side is overproducing more aldosterone than the other, etc. And get the doctor's input and advise as to where to go from here. If both sides are equal, my understanding is that meds are the best way to go; taking both adrenals is another nightmare altogether. But if one is more of a problem and taking that one would help, then that is sometimes recommended. Gotta have the AVS to know though. You can get AVS done sooner by going to NIH and participating in the clinical study I did. They are taking new patients still. > > Hi, > > I've been doing lots of searching online with no luck in finding anyone else with 2 adrenal adenomas. I've been waiting 6 months for my AVS test appointment and I'm getting pretty frustrated. Reading the symptoms that the rest of you have with the brain fog makes me feel slightly less crazy. I'm just wondering if there is anyone else with an adenoma on both adrenals, What the outcome for them has been. I'm 34 and really don't want to be on medications for the rest of my life to control this. > > thanks, > Sondra > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2012 Report Share Posted March 22, 2012 The more here and in the world with two ADENOMAS than one. Indeed I suspect that most with PA have hyperplasia (multiple ADENOMAS mostly not visible on imaging. Need you complete story and ask you to enter your data into our database so we can better answer things like this based on your and others data over the next 10-30 years. I will send our last abstract based on our data tomorrow. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 21, 2012, at 6:58, Sondra <sugah.lala@...> wrote: Hi, I've been doing lots of searching online with no luck in finding anyone else with 2 adrenal adenomas. I've been waiting 6 months for my AVS test appointment and I'm getting pretty frustrated. Reading the symptoms that the rest of you have with the brain fog makes me feel slightly less crazy. I'm just wondering if there is anyone else with an adenoma on both adrenals, What the outcome for them has been. I'm 34 and really don't want to be on medications for the rest of my life to control this. thanks, Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2012 Report Share Posted March 22, 2012 Oh, you mean volume? 2103 ml over 24 hours. Is that what you are asking for? > > > > > > Hi, > > > > > > I've been doing lots of searching online with no luck in finding anyone else with 2 adrenal adenomas. I've been waiting 6 months for my AVS test appointment and I'm getting pretty frustrated. Reading the symptoms that the rest of you have with the brain fog makes me feel slightly less crazy. I'm just wondering if there is anyone else with an adenoma on both adrenals, What the outcome for them has been. I'm 34 and really don't want to be on medications for the rest of my life to control this. > > > > > > thanks, > > > Sondra > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2012 Report Share Posted March 22, 2012 Many of us on this site have adenomas on both adrenals. The question is if both adenomas are producing excess aldosterone? One adenoma can be large and you might think it's the guilty one, with the other adenoma small or almost invisible, but it's really the bad actor. Only a correctly done AVS can tell you - and many doctors don't really know how to do it correctly. You need to arm yourself with accurate information in order to be able to know if they know what they're doing. Ask your doctor how many cases of PA he's treated and what the rate of success has been in solving the high BP, low K problem?Here's the bad part. You might have one adrenal gland removed only to find out that it doesn't solve the problem. Now you have only one adrenal left and need to be on Spiro and low Na anyway.You are young so I can well understand your desire to just get rid of the problem via surgery. I don't blame you at all for wanting to pursue AVS, but just make sure you understand the correct way to go about the AVS because in all likelihood your doctor only thinks he understands, but doesn't really.Dianne - F- 69, bi-lateral adenomas of 1.2cm and 1.0cm. On 75mg Spiro and 37.5mg Atenolol, following a low-sodium, high potassium diet (Dash diet). BP this morning 127/67 - it had been measured as high as 224/114, even on a boatload of BP meds, before diagnosis and change in medication and diet. So see? If you have both adrenals acting badly you can still live a normal life. It just calls for some big changes in your diet and all for the better. Think fresh foods and no pre-packaged stuff, which are almost all too high in Na.--- On Wed, 3/21/12, Sondra <sugah.lala@...> wrote Hi, I've been doing lots of searching online with no luck in finding anyone else with 2 adrenal adenomas. I've been waiting 6 months for my AVS test appointment and I'm getting pretty frustrated. Reading the symptoms that the rest of you have with the brain fog makes me feel slightly less crazy. I'm just wondering if there is anyone else with an adenoma on both adrenals, What the outcome for them has been. I'm 34 and really don't want to be on medications for the rest of my life to control this. thanks, Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2012 Report Share Posted March 22, 2012 Sondra, do we know your story and how you were DXed to get to an AVS? Without the preliminary testing you may be just throwing money down the drain. You mention 2 adenomas, is that one in each adrenal? How and why did they find them? What size are they and how did they look? Who is ordering AVS and what is his/her experience? Give us your story and we'd love to help you! - 65 yo super ob., fastidious male - 12mm X 13mm rt. a.adnoma with previous rt. flank pain. Treating with DASH. Stats w/o meds = BP 167/90 HR 73 BS 140. D/C Spironolactone 12/20/2011 due to adverse SX. Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, Gynecomastia, MDD and PTSD. Meds: Duloxetine hcl 80 MG, Verapamil HCL 240mg, Hydralazine HLC 10mg bid, 81mg aspirin and Metformin 2000MG. Off Spironolactone since 12/20/11. AVS & testing scheduled for April 1, 2012 at NIH. > > Many of us on this site have adenomas on both adrenals. The question is if both adenomas are producing excess aldosterone? One adenoma can be large and you might think it's the guilty one, with the other adenoma small or almost invisible, but it's really the bad actor. Only a correctly done AVS can tell you - and many doctors don't really know how to do it correctly. You need to arm yourself with accurate information in order to be able to know if they know what they're doing. Ask your doctor how many cases of PA he's treated and what the rate of success has been in solving the high BP, low K problem? > Here's the bad part. You might have one adrenal gland removed only to find out that it doesn't solve the problem. Now you have only one adrenal left and need to be on Spiro and low Na anyway. > You are young so I can well understand your desire to just get rid of the problem via surgery. I don't blame you at all for wanting to pursue AVS, but just make sure you understand the correct way to go about the AVS because in all likelihood your doctor only thinks he understands, but doesn't really. > Dianne - F- 69, bi-lateral adenomas of 1.2cm and 1.0cm. On 75mg Spiro and 37.5mg Atenolol, following a low-sodium, high potassium diet (Dash diet). BP this morning 127/67 - it had been measured as high as 224/114, even on a boatload of BP meds, before diagnosis and change in medication and diet. So see? If you have both adrenals acting badly you can still live a normal life. It just calls for some big changes in your diet and all for the better. Think fresh foods and no pre-packaged stuff, which are almost all too high in Na. > > > --- On Wed, 3/21/12, Sondra <sugah.lala@...> wrote > > > > > > > > > > > > > > > > Â > > > > > > > > > > Hi, > > > > I've been doing lots of searching online with no luck in finding anyone else with 2 adrenal adenomas. I've been waiting 6 months for my AVS test appointment and I'm getting pretty frustrated. Reading the symptoms that the rest of you have with the brain fog makes me feel slightly less crazy. I'm just wondering if there is anyone else with an adenoma on both adrenals, What the outcome for them has been. I'm 34 and really don't want to be on medications for the rest of my life to control this. > > > > thanks, > > Sondra > Quote Link to comment Share on other sites More sharing options...
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