Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 There is no reason the remaining gland cannot take over the activity of the one you lost. But have to admit that no one has ever studied folks properly to really test this. CE Grim MDOn Feb 6, 2012, at 7:49 PM, parkinsoniowa wrote: I had an adrenalectomy (right side) 6 years ago. I am currently drug free with no major blood pressure issues. I'm wondering if anyone is experiencing any side effects of living with 1 adrenal gland. Has anyone noticed a difference in their ability to handle stress? Is anxiety or depression an issue for anyone? Any memory or concentration issues? Any sleep issues? Is fatigue still an issue? Weight gain? Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 I can report on a study of one. My mother had a kidney removed at age ~25. During the operation they found she was pregnant with her first child. I saw none of the symptoms you describe that I can attribute to the missing adrenal. (Now there may have been a little stress and fatigue from raising 6 children!) She had great life, living to age 87. ..... > > > I had an adrenalectomy (right side) 6 years ago. I am currently drug > > free with no major blood pressure issues. I'm wondering if anyone is > > experiencing any side effects of living with 1 adrenal gland. Has > > anyone noticed a difference in their ability to handle stress? Is > > anxiety or depression an issue for anyone? Any memory or > > concentration issues? Any sleep issues? Is fatigue still an issue? > > Weight gain? Thanks. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 I had an Adx last September, & still have fatigue & migraines, which I had hoped would lessen after the Adx, but I now believe were underlying issues. I also have concentration, memory & sleep issues, which I also believe are not related to PA or the Adx. I am curious how you are doing. I don't think that I had seen anyone post here who is more than 2 years from an Adx. Lucy Sage Please forgive brevity & typos Sent from my droid parkinsoniowa <parkinsoniowa@...> wrote: >I had an adrenalectomy (right side) 6 years ago. I am currently drug free with no major blood pressure issues. I'm wondering if anyone is experiencing any side effects of living with 1 adrenal gland. Has anyone noticed a difference in their ability to handle stress? Is anxiety or depression an issue for anyone? Any memory or concentration issues? Any sleep issues? Is fatigue still an issue? Weight gain? Thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!??Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again!I'm now taking Spironolactone prior to surgery and still feel great.Do you have to have the surgery?! I have two small adenoma's in my left adrenal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 My adrenalectomy was just this past October. So far I can only say positive things about most of the issues you addressed: For the first time in over 10 years, I'm back down to my pre-illness weight without even trying and seem to be able to eat what I want without weight gain. This is probably easier for me as I do have a restricted diet and by default cannot eat junk food or processed food of any kind. Anxiety is completely gone. Prior to the surgery I felt constant, low-grade anxiety that never went away. Depression was never an issue so I can't really comment on that.Sleep is pretty normal for once in my life - prior to the surgery, I stayed up late (couldn't seem to wind down before 1am, ever!) and slept in late when I could; now I'm usually in bed by midnight and up by 8. Memory and concentration are far better - this was something I noticed the day I came home from the hospital.Fatigue and handling stress have not been problematic - both were far worse before the surgery.However, there is a former member of this site who no longer posts here but still keeps a blog of her post-ADX symptoms, and she seems to have a lot of issues with some of the things you have mentioned: http://hyperaldosteronism.blogspot.com-msmith1928Left laparoscopic adrenalectomy 10/13/2011Celiac disease and hereditary fructose intolerance>> I had an adrenalectomy (right side) 6 years ago. I am currently drug free with no major blood pressure issues. I'm wondering if anyone is experiencing any side effects of living with 1 adrenal gland. Has anyone noticed a difference in their ability to handle stress? Is anxiety or depression an issue for anyone? Any memory or concentration issues? Any sleep issues? Is fatigue still an issue? Weight gain? Thanks.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 What has your post op renin and aldo numbers been.Recall that I think most PA is bilateral and many will slowly develop it again.Can you give details of the migraines.?CE Grim MDOn Feb 7, 2012, at 5:03 AM, Lucy Sage wrote: I had an Adx last September, & still have fatigue & migraines, which I had hoped would lessen after the Adx, but I now believe were underlying issues. I also have concentration, memory & sleep issues, which I also believe are not related to PA or the Adx. I am curious how you are doing. I don't think that I had seen anyone post here who is more than 2 years from an Adx. Lucy Sage Please forgive brevity & typos Sent from my droid parkinsoniowa <parkinsoniowa@...> wrote: >I had an adrenalectomy (right side) 6 years ago. I am currently drug free with no major blood pressure issues. I'm wondering if anyone is experiencing any side effects of living with 1 adrenal gland. Has anyone noticed a difference in their ability to handle stress? Is anxiety or depression an issue for anyone? Any memory or concentration issues? Any sleep issues? Is fatigue still an issue? Weight gain? Thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 That's great to hear so many positives about how you're feeling post surgery! I just seem to read so many posts where things have not improved particularly except possibly the hypertension. I'm awaiting surgery and i too am a coeliac, so am looking forward to shaking off some weight! > > > > I had an adrenalectomy (right side) 6 years ago. I am currently drug > free with no major blood pressure issues. I'm wondering if anyone is > experiencing any side effects of living with 1 adrenal gland. Has > anyone noticed a difference in their ability to handle stress? Is > anxiety or depression an issue for anyone? Any memory or concentration > issues? Any sleep issues? Is fatigue still an issue? Weight gain? > Thanks. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 From what I under stand what Dr grim says. If you have more then one adenoma on the same side then you most likey have them on the other side or soon will have. Do you have your AVS report? > > I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!?? > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again! > I'm now taking Spironolactone prior to surgery and still feel great. > > Do you have to have the surgery?! I have two small adenoma's in my left adrenal. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 Hi , the short answer is NO, in fact Dr. Grim advocates the medical approach and the DASH eating plan. I don't know your story, comorbid conditions, BP, age, etc. (I have done a lot of research and am in fact in the process of seeing if I am candidate for surgery, I have tumor in my right adrenal.) I had all the symptoms you reported and a few more (T2DM, COPD, f/t Oxygen, ect.) BP was well controlled for 18 months and everything was well controlled for 7 (it took me 10 months to figure DASH and get my NA under control.) I was real excited the day they loaded my oxygen tanks, all 42 of them, on the truck and I was no longer tethered to a plastic hose! (The low oxygen was caused by LVH which resolved after 12 weeks!) All this was on 25MG bid of Spironolactone and DASH! Gynecomstia got bad enough from low testosterone, caused by spiro sometimes in males, that I had to change. I usually don't make recommendations but if I was doing it and well controlled on spiro w/o adverse SX, I'd stay the course, start DASHing if you haven't already. You can always have surgery later if necessary but you can't do the reverse once the adrenal is removed! Hope this helps, keep us posted and welcome aboard! - 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 175/90 HR 59 BS 125. 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, Metoprolol Tartrate 200 MG, AmlodipineBesylate 5mg, 81mg aspirin and Metformin 2000MG. Started washing Spironolactone 12/20/11 to prepare for AVS. > > I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!?? > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again! > I'm now taking Spironolactone prior to surgery and still feel great. > > Do you have to have the surgery?! I have two small adenoma's in my left adrenal. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 My " short answer " was for your second question, each person has to answer the first question for themself! I suspect we hear more of the failures because they are still searching for answers. The successful one are out having fun, except for the few that stick with us to remind us of their experience. It certainly helps balance the experience! > > > > I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!?? > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again! > > I'm now taking Spironolactone prior to surgery and still feel great. > > > > Do you have to have the surgery?! I have two small adenoma's in my left adrenal. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 What do you mean " many will slowly develop it again? " I had the gland and tumor removed. Can I develop new problems or new tumors with the remaining gland? > > > > >I had an adrenalectomy (right side) 6 years ago. I am currently > > drug free with no major blood pressure issues. I'm wondering if > > anyone is experiencing any side effects of living with 1 adrenal > > gland. Has anyone noticed a difference in their ability to handle > > stress? Is anxiety or depression an issue for anyone? Any memory or > > concentration issues? Any sleep issues? Is fatigue still an issue? > > Weight gain? Thanks. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 I'm getting a little freaked out. I had the right gland and tumor removed 6 years ago. Are you saying that it is likely, possible or probable to have new tumors appear on the remaining gland? God, I hope not! I'm so sick of this diagnosis! > > > > I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!?? > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again! > > I'm now taking Spironolactone prior to surgery and still feel great. > > > > Do you have to have the surgery?! I have two small adenoma's in my left adrenal. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 Seems like most of the " success stories " just disappear from this forum after their surgery (or for that matter, successful management by drugs/diet). When I was diagnosed, I sort of made it my mission that *something* good was going to come of this situation - so my hope is that by hanging around and continuing to check in, somehow I'll be able to help others. At least I like to think I'm helping As for the weight - I've heard from several adrenalectomy patients that they dropped 15 pounds from the surgery. In my case it was 10, but I didn't weigh that much to begin with (low 120s, now 111). This is likely from salt/water retention that is resolved after the tumor is gone. > > > > > > I had an adrenalectomy (right side) 6 years ago. I am currently drug > > free with no major blood pressure issues. I'm wondering if anyone is > > experiencing any side effects of living with 1 adrenal gland. Has > > anyone noticed a difference in their ability to handle stress? Is > > anxiety or depression an issue for anyone? Any memory or concentration > > issues? Any sleep issues? Is fatigue still an issue? Weight gain? > > Thanks. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 How old are you?Family Hx of HTN?Really need your complete story to be able to help faster.CE Grim MDOn Feb 7, 2012, at 6:52 AM, Chambers wrote: I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!??Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again!I'm now taking Spironolactone prior to surgery and still feel great.Do you have to have the surgery?! I have two small adenoma's in my left adrenal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 Yes it's great to hear SOME success stories. Can i just ask. Which is the test that determines whether you have a Pheochromocytoma?! At present i've just been told that i have two aldosterone producing adrenal adenoma's (smaller than 2cm's) also what is the purpose of AVS?! As i've been informed that they don't need to do this?!Many thanks From: msmith_1928 <janeray1940@...> hyperaldosteronism Sent: Wednesday, 8 February 2012, 15:33 Subject: Re: Any side effects of living with 1 adrenal gland after surgery? Seems like most of the "success stories" just disappear from this forum after their surgery (or for that matter, successful management by drugs/diet). When I was diagnosed, I sort of made it my mission that *something* good was going to come of this situation - so my hope is that by hanging around and continuing to check in, somehow I'll be able to help others. At least I like to think I'm helping As for the weight - I've heard from several adrenalectomy patients that they dropped 15 pounds from the surgery. In my case it was 10, but I didn't weigh that much to begin with (low 120s, now 111). This is likely from salt/water retention that is resolved after the tumor is gone. > > > > > > I had an adrenalectomy (right side) 6 years ago. I am currently drug > > free with no major blood pressure issues. I'm wondering if anyone is > > experiencing any side effects of living with 1 adrenal gland. Has > > anyone noticed a difference in their ability to handle stress? Is > > anxiety or depression an issue for anyone? Any memory or concentration > > issues? Any sleep issues? Is fatigue still an issue? Weight gain? > > Thanks. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 Yes, I have seen the blog. It was her blog that lead me to this group. Thank you for your reply. > > > > I had an adrenalectomy (right side) 6 years ago. I am currently drug > free with no major blood pressure issues. I'm wondering if anyone is > experiencing any side effects of living with 1 adrenal gland. Has > anyone noticed a difference in their ability to handle stress? Is > anxiety or depression an issue for anyone? Any memory or concentration > issues? Any sleep issues? Is fatigue still an issue? Weight gain? > Thanks. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 Look at this study and then decide if you should have AVS. But only would have AVS if you still think surgery is your best option. Systematic review: diagnostic procedures to differentiate unilateral from bilateral adrenal abnormality in primary aldosteronism. Kempers MJ, Lenders JW, van Outheusden L, van der Wilt GJ, Schultze Kool LJ, Hermus AR, Deinum J. SourceRadboud University Nijmegen Medical Centre, Nijmegen, the Netherlands. Abstract BACKGROUND: Computed tomography (CT), magnetic resonance imaging (MRI), and adrenal vein sampling (AVS) are used to distinguish unilateral from bilateral increased aldosterone secretion as a cause of primary aldosteronism. This distinction is crucial because unilateral primary aldosteronism can be treated surgically, whereas bilateral primary aldosteronism should be treated medically. PURPOSE: To determine the proportion of patients with primary aldosteronism whose CT or MRI results with regard to unilateral or bilateral adrenal abnormality agreed or did not agree with those of AVS. DATA SOURCES: PubMed, MEDLINE, EMBASE, and Cochrane Library, 1977 to April 2009. STUDY SELECTION: Studies describing adults with primary aldosteronism who underwent CT/MRI and AVS were included. Of 472 initially identified studies, 38 met the selection criteria; extractable data were available for 950 patients. DATA EXTRACTION: The CT/MRI result was considered accurate when AVS showed unilaterally increased aldosterone secretion on the same side as the abnormality seen on CT/MRI or when AVS showed symmetric aldosterone secretion and CT/MRI revealed bilateral or no unilateral abnormality. DATA SYNTHESIS: In 37.8% of patients (359 of 950), CT/MRI results did not agree with AVS results. If only CT/MRI results had been used to determine lateralization of an adrenal abnormality, inappropriate adrenalectomy would have occurred in 14.6% of patients (where AVS showed a bilateral problem), inappropriate exclusion from adrenalectomy would have occurred in 19.1% (where AVS showed unilateral secretion), and adrenalectomy on the wrong side would have occurred in 3.9% (where AVS showed aldosterone secretion on the opposite side). LIMITATION: The lack of follow-up data in the included articles made it impossible to confirm that adrenalectomies were performed appropriately. CONCLUSION: When AVS is used as the criterion standard test for diagnosing laterality of aldosterone secretion in patients with primary aldosteronism, CT/MRI misdiagnosed the cause of primary aldosteronism in 37.8% of patients. Relying only on CT/MRI may lead to inappropriate treatment of patients with primary aldosteronism > > > > I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!?? > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again! > > I'm now taking Spironolactone prior to surgery and still feel great. > > > > Do you have to have the surgery?! I have two small adenoma's in my left adrenal. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 FWIW, I had an Adx without trying spiro or ephler. because: (1) it was what my endo recommended (my nepro when asked what she would do if she were me, said she would try spiro); (2) my K was so low that I was taking 175 MEQ of K & it seemed like most on spiro or ephler still needed K supplements; (3) I have chronic gastritis which flared up from the K, & a side effect of MCBs is stomach issues; (4) I am 59 & I did not want to wait for another year (trying MCBs) to have the Adx; & (5) most of the literature I read, primarily from this site recommended it. That bring said, had I known or seen studies that showed that other adrenal eventually is affected with PA, I likely would have tried MCBs first. The idea that Adx is not reversible is compelling reason to try medical route. Nonetheless, I don't like to take medication & my gut feeling was to have the Adx. However, I would not have had an Adx without an AVS. Every abstract I read recomends it. Just because there is an adenoma in my adrenal does not mean there is not one in the other adrenal or that the adenoma is the problem. My AVS cost my insurance around $5,000. My Adx cost around $20,000. Lucy Sage Adx Sept. 2012 Path report showed 6 x 7 mm nonmalignent cortical adenoma Please forgive brevity & typos Sent from my droid <jclark24p@...> wrote: >Hi , the short answer is NO, in fact Dr. Grim advocates the medical approach and the DASH eating plan. > >I don't know your story, comorbid conditions, BP, age, etc. (I have done a lot of research and am in fact in the process of seeing if I am candidate for surgery, I have tumor in my right adrenal.) > >I had all the symptoms you reported and a few more (T2DM, COPD, f/t Oxygen, ect.) BP was well controlled for 18 months and everything was well controlled for 7 (it took me 10 months to figure DASH and get my NA under control.) I was real excited the day they loaded my oxygen tanks, all 42 of them, on the truck and I was no longer tethered to a plastic hose! (The low oxygen was caused by LVH which resolved after 12 weeks!) All this was on 25MG bid of Spironolactone and DASH! Gynecomstia got bad enough from low testosterone, caused by spiro sometimes in males, that I had to change. > >I usually don't make recommendations but if I was doing it and well controlled on spiro w/o adverse SX, I'd stay the course, start DASHing if you haven't already. You can always have surgery later if necessary but you can't do the reverse once the adrenal is removed! > >Hope this helps, keep us posted and welcome aboard! > > - 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 175/90 HR 59 BS 125. 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, Metoprolol Tartrate 200 MG, AmlodipineBesylate 5mg, 81mg aspirin and Metformin 2000MG. Started washing Spironolactone 12/20/11 to prepare for AVS. > > > >> >> I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!?? >> Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again! >> I'm now taking Spironolactone prior to surgery and still feel great. >> >> Do you have to have the surgery?! I have two small adenoma's in my left adrenal. >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 I have a problem with this review due to the quality and lack of control of the input. I believe there were major inhancements made to the scanning equipment in the 33 years this review covered. They also made no attempt to qualify the human factor or even identify if the protocol changed! I think we are all in agreement that more experience is usually better. I also think the decision as to whether you will have surgery is a lot more complicated than just deciding if you think it is your best option. If the DX is confirmed via labs and ct-scan that you have PA, the best time to do an AVS is before you start MCBs. You still don't know if or how well meds and dash will work. (Cost is definate factor.) I can assure you that treating and watching everything resolve and then watching everything fall apart sucks! (The last two times they have checked my oxygen it was down to 90 where it was 94 6 weeks ago!) Sometimes the known is worse than the unknown! > > > > > > I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!?? > > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again! > > > I'm now taking Spironolactone prior to surgery and still feel great. > > > > > > Do you have to have the surgery?! I have two small adenoma's in my left adrenal. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 Both aldo & renin were low. Cortisol was also low, so I had ACTH stimulation, which I passed. I have headaches more than 50% of the time, which are dull & tight on my forehead & sinuses, to the right & in the back of my head. When they get bad, which happens 5 or 6, times/month, they are sharp & trobbing, I become sensitive to light, noise, touch & smell. When they get really bad, I throw up. Fortunately I can take Nabumtone or inject Toradol before most reach that point. I have had migraines & headaches like this since 2002. I think they are related to menopause. Lucy Sage Please forgive brevity & typos Sent from my droid Clarence Grim <lowerbp2@...> wrote: >What has your post op renin and aldo numbers been. > >Recall that I think most PA is bilateral and many will slowly develop >it again. > >Can you give details of the migraines.? > >CE Grim MD > > >On Feb 7, 2012, at 5:03 AM, Lucy Sage wrote: > >> I had an Adx last September, & still have fatigue & migraines, which >> I had hoped would lessen after the Adx, but I now believe were >> underlying issues. I also have concentration, memory & sleep issues, >> which I also believe are not related to PA or the Adx. >> >> I am curious how you are doing. I don't think that I had seen anyone >> post here who is more than 2 years from an Adx. >> >> Lucy Sage >> >> Please forgive brevity & typos >> Sent from my droid >> >> parkinsoniowa <parkinsoniowa@...> wrote: >> >> >I had an adrenalectomy (right side) 6 years ago. I am currently >> drug free with no major blood pressure issues. I'm wondering if >> anyone is experiencing any side effects of living with 1 adrenal >> gland. Has anyone noticed a difference in their ability to handle >> stress? Is anxiety or depression an issue for anyone? Any memory or >> concentration issues? Any sleep issues? Is fatigue still an issue? >> Weight gain? Thanks. >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 I had an adrenalectomy in June without AVS - based entirely on MRI and the various hormone levels. I realised it was a risk but the endocrinologist here (I'm in Switzerland) reckoned the odds were high in my favour (under 40, discrete growth of 20mm on one side, other side clear, recent onset). The surgery went really smoothly and I am officially cured. Before surgery my BP without meds was up at about 170/110 on a regular basis, last time I checked (last week?) it was 115/75. I never had any other symptoms from PA so I can't claim a huge change of quality of life - I was healthy before and I still am. So clearly you need to evaluate the risks with your own doctors and AVS is the way to go if you want to be absolutely sure. But my specialists reckoned it was extremely unlikely to recur on the other side - and I reckoned if it did, I'd just have to be on drugs for life. Since that's what I was facing before surgery, even if it does come back, I should have bought myself a few more years drug free. And FWIW, I have a friend who was diagnosed with kidney cancer at a very young age (3ish from memory) and lost one kidney then. It then came back on the other side so most of that had to be removed too. I must ask her the details of her second adrenal gland but I presume she lost the first when her first kidney went. Clearly she's still alive and well - now has four children and will be turning 40 this year. So 37 years on and she's not suffered from the loss of adrenal gland. She is careful about drinking alcohol etc. but mostly because she knows her part kidney should not be overloaded. Good luck! Hester > > > > I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!?? > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again! > > I'm now taking Spironolactone prior to surgery and still feel great. > > > > Do you have to have the surgery?! I have two small adenoma's in my left adrenal. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 Had I been able to tolerate meds I might have considered not having surgery. I tried spiro twice and had tons of side effects both times and felt absolutely awful. I had planned to try eplerenone, but once I got the green-light for surgery, my medical team and I decided that was the best option for me based on my long history of difficulty tolerating drugs. So far I haven't regretted it. As far as the likelihood of another tumor developing in the remaining adrenal, my surgeon's best guess was that there is a 5% or less risk of that, based on her experience. I know that this is just her educated guess, but I decided those were odds I was willing to live with. My left adrenal had one clearly visible tumor, was definitely overproducing aldo, and had an " enlarged and lumpy appearance " to all the doctors who viewed my scans. My remaining right adrenal was not overproducing and had a " normal " appearance. I would not have opted for surgery WITHOUT getting AVS first, though. I know that for those under 40, AVS is often skipped. I was 44 at the time of my diagnosis and skipping it was not an option for me. > > I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!?? > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again! > I'm now taking Spironolactone prior to surgery and still feel great. > > Do you have to have the surgery?! I have two small adenoma's in my left adrenal. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 The test to screen for pheos is plasma free metanephrines: http://labtestsonline.org/understanding/analytes/plasma-metanephrine/tab/test Dr. Grim can give you a more scientific answer than this but basically AVS is the only test that will show with accuracy (if done right!) which of the adrenals (or both) is overproducing aldosterone. > > > > > > > > I had an adrenalectomy (right side) 6 years ago. I am currently drug > > > free with no major blood pressure issues. I'm wondering if anyone is > > > experiencing any side effects of living with 1 adrenal gland. Has > > > anyone noticed a difference in their ability to handle stress? Is > > > anxiety or depression an issue for anyone? Any memory or concentration > > > issues? Any sleep issues? Is fatigue still an issue? Weight gain? > > > Thanks. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 The medical advice I got was that it was highly unlikely. Don't know on what research but you're six years on and doing well, that's a good sign, isn't it? > > > > > > I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!?? > > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again! > > > I'm now taking Spironolactone prior to surgery and still feel great. > > > > > > Do you have to have the surgery?! I have two small adenoma's in my left adrenal. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 How old are you? Standard procedure in many hospitals (often required by insurance companies) is to skip the AVS if you are < 40. I think it is a money issue since most of the time it is true. So what if they do 1 or 2 unnecessry operations, they save $25,000 everytime they skip an AVS! What do you mean you object? Oh, it was your adrenal that was not overproducing, I see! Sorry! The other thing is that many doctors do not understand the process. They read where adrenals produce adenomas, adenomas can cause Conn's Syndrome. They then see an adenoma on a ct-scan and walla, they assume the answer! (They forget they were taught in school that " ASSUME sometimes makes an ASS out of U and ME!) Ask your recommending doctor if excess aldosterome could be coming from anywhere else. S/He needs to come up with the other adrenal and a few other organs like maybe the heart, liver and I don't remember them all. The AVS measurers what is coming out of the adrenal and if it is done right and the person interpretting it knows how to read it they have the best chance of not needlessly removing an unecessary adrenal. Hope that helps! ..... > > > > > > > > I had an adrenalectomy (right side) 6 years ago. I am currently drug > > > free with no major blood pressure issues. I'm wondering if anyone is > > > experiencing any side effects of living with 1 adrenal gland. Has > > > anyone noticed a difference in their ability to handle stress? Is > > > anxiety or depression an issue for anyone? Any memory or concentration > > > issues? Any sleep issues? Is fatigue still an issue? Weight gain? > > > Thanks. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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