Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Hi Mark, A quick note to encourage. I had a left adrenalectomy late October on a Thursday done at the Mayo Clinic in Rochester, Minnesota. I went back to work the next Monday afternoon and did 4 surgeries the next day. I did not know how bad I had been feeling until I got my potassium up to normal...which happened promptly. Then I stopped a lot of my caffeine (via diet soda and tea). Still take a little medicine for blood pressure. Something that the surgeon didn't emphasize but the pre-op nurse did was the referred pain from the CO2 gas used during the surgery. It can get under the diaphragm and make you think that you are having a heart attack!. I sat up the first day and the little gas bubble which had been in my abdomen went under the diaphragm...and did the shoulder ache! I would summarize my advice. In the hands of a skilled surgeon and OR team, this surgery can work well. I chose the best team I could find. They did a very complete workup which included selective adrenal vein sampling to be sure that only one adrenal was involved. The Radiologist had a success average of 95%, compared to the national US average of 30% success in the adrenal vein sampling. I later had an experienced endocrine surgeon who thought that he lad about a 96% chance of doing the operation with a scope. Had he not been able to have done the surgery in the laparoscopic technique, my recovery time would have been longer...about a month. The team I had at the Mayo Clinic had published their results. I noted that I had all three authors of the article involved with my care (not counting the resident surgeons who helped with the post op care). We are all individuals and there are many things which can influence the outcome of an operation. With this one, experience counts. (I would not recommend the rapid return to work, but in my case there were a few patients demanding my surgical skills for their eye problem which needed prompt attention.) Umm, Curious Is anyone here that has had an adrenal surgrey? Does it actually make you feel better? I would like to know if you actually start to feel better..I would like very much to be done and over with all this..Do you still have to stay on meds? Or if you have to take meds from time to time, do you ever feel better? This spiro is actually really messing me up..For 7 hours from the time I take it I feel like S**t..Then I get a few hours break and when I take it again, I feel icky again..I still worry about my potassium and B/P because of the fluctuations in both..I just wonder if I will ever be able to have a life again..Well, If anyone can relate, write back..Take Care, Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Hi Mark, A quick note to encourage. I had a left adrenalectomy late October on a Thursday done at the Mayo Clinic in Rochester, Minnesota. I went back to work the next Monday afternoon and did 4 surgeries the next day. I did not know how bad I had been feeling until I got my potassium up to normal...which happened promptly. Then I stopped a lot of my caffeine (via diet soda and tea). Still take a little medicine for blood pressure. Something that the surgeon didn't emphasize but the pre-op nurse did was the referred pain from the CO2 gas used during the surgery. It can get under the diaphragm and make you think that you are having a heart attack!. I sat up the first day and the little gas bubble which had been in my abdomen went under the diaphragm...and did the shoulder ache! I would summarize my advice. In the hands of a skilled surgeon and OR team, this surgery can work well. I chose the best team I could find. They did a very complete workup which included selective adrenal vein sampling to be sure that only one adrenal was involved. The Radiologist had a success average of 95%, compared to the national US average of 30% success in the adrenal vein sampling. I later had an experienced endocrine surgeon who thought that he lad about a 96% chance of doing the operation with a scope. Had he not been able to have done the surgery in the laparoscopic technique, my recovery time would have been longer...about a month. The team I had at the Mayo Clinic had published their results. I noted that I had all three authors of the article involved with my care (not counting the resident surgeons who helped with the post op care). We are all individuals and there are many things which can influence the outcome of an operation. With this one, experience counts. (I would not recommend the rapid return to work, but in my case there were a few patients demanding my surgical skills for their eye problem which needed prompt attention.) Umm, Curious Is anyone here that has had an adrenal surgrey? Does it actually make you feel better? I would like to know if you actually start to feel better..I would like very much to be done and over with all this..Do you still have to stay on meds? Or if you have to take meds from time to time, do you ever feel better? This spiro is actually really messing me up..For 7 hours from the time I take it I feel like S**t..Then I get a few hours break and when I take it again, I feel icky again..I still worry about my potassium and B/P because of the fluctuations in both..I just wonder if I will ever be able to have a life again..Well, If anyone can relate, write back..Take Care, Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Thanks Dr. Don...I needed the encoragement.This has got me bad, and i am not tolerating the pills very well. Seems like every side effect they carry i have. I am not for sure if i have hyperaldostonism yet or not. It has been almost 2 weeks since my adrenal vein sampling, done at the University of Michigan. I was told by another doctor in another group who is Dr. Grimm on bloodpressureline, that my cortisol levels should go up during test due to ACTH given. Which he says means they were in successful in getting samples from both veins. My surgeon Dr Czako in Royal Oak Mi. At Beaumont hospital is ready to do this as soon as he knows it is only one if that is one at all. He says he expects to see me up and going within 3 weeks. I think 4 days would be pushing it..LOL. So please take care and thanks for your info. One more thing they say you feel better than you have in years if you have this done is this true? Does your potassium stay normal now that is one of my biggest concerns? Thanks again Mark Umm, Curious Is anyone here that has had an adrenal surgrey? Does it actually make you feel better? I would like to know if you actually start to feel better..I would like very much to be done and over with all this..Do you still have to stay on meds? Or if you have to take meds from time to time, do you ever feel better? This spiro is actually really messing me up..For 7 hours from the time I take it I feel like S**t..Then I get a few hours break and when I take it again, I feel icky again..I still worry about my potassium and B/P because of the fluctuations in both..I just wonder if I will ever be able to have a life again..Well, If anyone can relate, write back..Take Care, Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Thanks Dr. Don...I needed the encoragement.This has got me bad, and i am not tolerating the pills very well. Seems like every side effect they carry i have. I am not for sure if i have hyperaldostonism yet or not. It has been almost 2 weeks since my adrenal vein sampling, done at the University of Michigan. I was told by another doctor in another group who is Dr. Grimm on bloodpressureline, that my cortisol levels should go up during test due to ACTH given. Which he says means they were in successful in getting samples from both veins. My surgeon Dr Czako in Royal Oak Mi. At Beaumont hospital is ready to do this as soon as he knows it is only one if that is one at all. He says he expects to see me up and going within 3 weeks. I think 4 days would be pushing it..LOL. So please take care and thanks for your info. One more thing they say you feel better than you have in years if you have this done is this true? Does your potassium stay normal now that is one of my biggest concerns? Thanks again Mark Umm, Curious Is anyone here that has had an adrenal surgrey? Does it actually make you feel better? I would like to know if you actually start to feel better..I would like very much to be done and over with all this..Do you still have to stay on meds? Or if you have to take meds from time to time, do you ever feel better? This spiro is actually really messing me up..For 7 hours from the time I take it I feel like S**t..Then I get a few hours break and when I take it again, I feel icky again..I still worry about my potassium and B/P because of the fluctuations in both..I just wonder if I will ever be able to have a life again..Well, If anyone can relate, write back..Take Care, Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 I had my left adrenal gland removed in early October 2002 along with part of my left kidney and spleen. I now feel great. It took around 4 months to get back to some type of balance but I'm okay now. I don't take any medication AT ALL. I have blood work done every 2 weeks to check out the U & Es and I either increase or decrease sodium/potassium in my diet depending on the blood work results but I now know myself pretty much what the results will be. I have been left with memory loss and muscle weakness. I have also gained over 3 stone (weight) around the hips and waist. Calorie controlled diet and exercise hasn't helped!!!!! Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Be careful after surgery as it is a major operation. I was told 6 weeks off work - minimum. My op was more than simple adrenalectomy which is why it has taken me longer to recover and I have other health problems of course. I was in intensive care for 48 hours following the surgery. It is certainly worth having the surgery done for a single affected gland. I feel better than I have for 15 years. The CO2 issue is important to remember. It can be a real pain (in the shoulder!) I was not warned about it but I already knew from previous surgery. Also worth knowing that women will often menstrate a day or two after surgery so take pads into hospital with you. It also takes a day or two to get the bowels working again and can be rather painful the first time you " go " . Eat lots of fruit and drink plenty of plain water or squash. Tea and coffee probably best avoided. Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Yes, Mark My potassiium has been normal since the surgery. I suggest following your doctor's advise regarding post op management. Good luck. Don Beahm Umm, Curious Is anyone here that has had an adrenal surgrey? Does it actually make you feel better? I would like to know if you actually start to feel better..I would like very much to be done and over with all this..Do you still have to stay on meds? Or if you have to take meds from time to time, do you ever feel better? This spiro is actually really messing me up..For 7 hours from the time I take it I feel like S**t..Then I get a few hours break and when I take it again, I feel icky again..I still worry about my potassium and B/P because of the fluctuations in both..I just wonder if I will ever be able to have a life again..Well, If anyone can relate, write back..Take Care, Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Yes, Mark My potassiium has been normal since the surgery. I suggest following your doctor's advise regarding post op management. Good luck. Don Beahm Umm, Curious Is anyone here that has had an adrenal surgrey? Does it actually make you feel better? I would like to know if you actually start to feel better..I would like very much to be done and over with all this..Do you still have to stay on meds? Or if you have to take meds from time to time, do you ever feel better? This spiro is actually really messing me up..For 7 hours from the time I take it I feel like S**t..Then I get a few hours break and when I take it again, I feel icky again..I still worry about my potassium and B/P because of the fluctuations in both..I just wonder if I will ever be able to have a life again..Well, If anyone can relate, write back..Take Care, Mark Quote Link to comment Share on other sites More sharing options...
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