In my earlier posting on Adrenal Fatigue Syndrome I mentioned that I often wonder about a mind-body connection with regard to Conn's. I'm learning more each day as I investigate on the web. I happened to stumble across several interesting articles on the subject:
http://ezinearticles.com/?Mind-Body-Healing-Cures-Root-of-Illness&id=384269
http://nccam.nih.gov/health/backgrounds/mindbody.htm
http://thyroid.about.com/od/alternativeholisticinfo/a/chronicdisease.htm
http://wellness.wikispaces.com/Problems+with+Current+Practice+Guidelines+and+Quality+Improvement+(QI)+Programs+and+How+to+Solve+Them?f=print
I'd love to learn more, especially ways to improve an ill body with the help of the mind. As well, I am always on the look out for articles on diagnosing illnesses with both body and mind in mind. If only I could find them in the field of endocrinology. Thus far, none of the endo's I've been to have ever once asked about my emotional stress levels prior to prognosis. Nor have they seemed that concerned after, even when I complained of depression which I believe is common with Conn's. This isn't just a physical disease, things get convoluted and foggy. And even more stressful. I'm just trying to discover more clues as to why I got this thing called Conn's. Or have I just been conned by Conn's?
Monday, 29 December 2008
Friday, 26 December 2008
The Vein Sampling Results
December 2008
I just got my results from Dr. Liddell. He had called last week to give me the cortisol reading. Both adrenals had high cortisol levels which he said basically meant they found the adrenals, that's how they respond when poked with a catheter.
Today he gave me the aldosterone scores. Before the ACTH was added, my right adrenals aldo level was 21. After adding the ACTH, it was 208. This seemed in line with him, he did not believe there was bi-lateral overproduction going on. The left adrenal on the other hand (which is where the tumor is) was way out of line. Before the ACTH, left adrenal read 800, and after receiving it, it shot up to 4000, which is extremely high. The diagnosis was that I have a unilateral tumor on my adrenal gland that is out of control-exactly what we all thought. He highly suggested surgery (which didn't surprise me) saying I was too young and in shape to have to take blood pressure meds for the rest of my life, not to mention the danger factor of having such a condition in the first place. As well, I'd never have to take those darn horse pill potassium supplements again, yee-ha! Next step-- an endocrinologist visit followed by the surgeon.
While I'm not thrilled with the prospect of surgery, I now finally have concrete answers with some bright light up ahead at the end of this very long tunnel. I feel relieved in so many ways.
I just got my results from Dr. Liddell. He had called last week to give me the cortisol reading. Both adrenals had high cortisol levels which he said basically meant they found the adrenals, that's how they respond when poked with a catheter.
Today he gave me the aldosterone scores. Before the ACTH was added, my right adrenals aldo level was 21. After adding the ACTH, it was 208. This seemed in line with him, he did not believe there was bi-lateral overproduction going on. The left adrenal on the other hand (which is where the tumor is) was way out of line. Before the ACTH, left adrenal read 800, and after receiving it, it shot up to 4000, which is extremely high. The diagnosis was that I have a unilateral tumor on my adrenal gland that is out of control-exactly what we all thought. He highly suggested surgery (which didn't surprise me) saying I was too young and in shape to have to take blood pressure meds for the rest of my life, not to mention the danger factor of having such a condition in the first place. As well, I'd never have to take those darn horse pill potassium supplements again, yee-ha! Next step-- an endocrinologist visit followed by the surgeon.
While I'm not thrilled with the prospect of surgery, I now finally have concrete answers with some bright light up ahead at the end of this very long tunnel. I feel relieved in so many ways.
Sunday, 21 December 2008
The Adrenal Vein Sampling Test
December 2008
I finally had to have one of these intimidating procedures, the Adrenal Vein Sampling test (AVS). At this point, I would have done anything to help me get out of the hormonal hell I had been living in for at least four years. The surgeon I had met with last month felt pretty sure I was leaning toward surgery. All I knew was I didn't want to have to rely on so many drugs for the rest of my life. If I never had to take high blood pressure pills and potassium "horse pills" again, I would be eternally happy.
I had read all sorts of information about the AVS procedure on the web, how it's often difficult to get the catheter in the rightside adrenal vein, and sometimes the adrenals can get damaged. I also read that up to 50% of patients can have an unsuccessful reading. It all sounded very scary and risky to me.
I first heard about the test it when I went to my endocrinologist in early November. She highly recommended me having it, but she also said very few people perform them, as the test is very specialized and complicated. She only knew of one NIH trained doctor in the area who did them.
Even though I was getting sick of all the tests associated with Conn's, I started to think I should take it. And although I continued to scare myself by reading more frightening facts on line, I agreed to do it in November. I made a second appointment with my endo to get all the facts I could on the AVS. I recommend anyone with Conn's to do this--educating yourself about all the options and tests is crucial.
My doctor said the test was absolutely necessary to for me to take to ascertain whether the aldosterone adenoma was unilateral or bilateral, meaning- is it being produced by one or both adrenals. If it was unilateral, surgery was an option. If it was bilateral, surgery was not; I would have to take spironolactone for the rest of my life. I dreaded hearing this, but at least I knew where I stood.
Since the endo's AVS doctor recommendation failed, I ended up calling my surgeon friend who has been talking with me about Conn's. Since I first called him last summer, I have felt he is more knowledgeable about my condition than most of the doctors I have seen. He found a local radiologist who performs the procedure and set up the appointment. The doctors who perform the procedure are Interventional Radiologists. My particular doctor was trained at Johns Hopkins, and very familiar with my condition. Since I'm only mentioning in this blog the doctors who I highly recommend, I can say without hesitation both Dr. Sardi (surgeon) and Dr. Liddell (interventional radiologist) are two doctors I feel fortunate to have. Both are well-known experts in their fields, and both have staffs that are equally as professional and helpful.
If you looking for doctors in the Maryland/D.C. area, you should call these doctors. They both work at Mercy Medical Center, which is in the heart of Baltimore city. (contact info below)
THE PROCEDURE AND WHAT TO EXPECT
Before Surgery:
There really isn't much to do prior to the surgery. If you are on spiro, you must go off it (I luckily am not). After midnight, you cannot eat or drink anything. This includes water. You also can't take your BP meds the day of the AVS, so I suggest taking them right before midnight with a big glass of water. If you are like me, you are probably dehydrated often, so this part was tough, especially in the morning when all you want to do is drink a tall glass of H2O.
1st Part, The Preparation:
I when I woke up, I was exhausted because of my new, old friend-- insomnia. I was doing ok though, until around 9:30, when I was absolutely parched, and feeling the affects of no potassium in my system. This was grueling.
I arrived at the hospital, was admitted at 10:00 a.m., and by 10:30a.m., I was in a bed with a nurse explaining what I should expect. I had a companion with me; I recommend you take someone close to you that you can lean on. This is a serious test and it will become a pretty intense day for you quickly, you really should not go it alone.
You get your blood pressure taken first thing. You will also have your temperature taken. They stuck a weird instrument in my ear to get mine, it was very unusual.
Next, you'll get a catheter inserted (no, not fun at all). It is extremely unpleasant if you've never had one-- the first 1/2 hour feels very weird, with lots of pressure down there.
Since this is a procedure where another catheter goes into both sides of your groin, expect a "Brazilian" look to your downtown region, no matter your sex. Sexy, huh!
About 20 minutes later, you will then receive your I.V. for the anesthesia.
A nurse will take your blood pressure about 3-4 times before they wheel you in, as they want to make sure it's not high.
Soon after, the doctor arrives and he explains how the procedure works, how long it usually takes and what the risks are. Like I had read, the major risks are blood clotting, not being able to find the adrenals, which result in an insufficient reading-something you don't want to occur. I was thrilled when he didn't mention words like death or imploding adrenals.
2nd Part, The Surgery:
About an hour or so after being admitted, you will be wheeled in to the operating room where about 4 nurses are prepping for your surgery. They will clean and sterilize your groin area for a bit and then place a piece of heavy tape or plastic between your legs up to your chest. You will then be administered a sedative and anesthesia- mine was Fentanyl and something else. It takes very little time to get loopy and feel tired. There will be nurse at your side to make sure you are doing ok, and to answer any questions, or just hold your hand. The other nurses will be helping the doctor and cleaning/preparing instruments. I was surprised to see so many nurses, but like I said, this was a complicated procedure.
I was in and out of consciousness the whole time, and could see Dr. Liddell looking at a computer screen while operating the catheters. Towards the middle, my nose started to itch like crazy and I begged the nurse to scratch it. It was strangest feeling and it went on for a long while. She used a gauze to itch it but I asked if she could just use her rubber gloves because I knew they'd be more effective. It's evidently a side affect of the Fentanyl and it was very annoying. Towards the end, the doctor said he was having a hard time finding my right adrenal but wasn't going to give up, so I would have to be in there longer. I was in surgery for 4 hours, which is on the long side.
3rd Part, Recovery:
When they are done, you get wheeled back to your bed. You will be out of it for about 1 hour. The nurses will check on you constantly and see that you are ok. They are mainly concerned with hematomas (bruising, which I had) and clotting. You will be asked to keep you legs as straight and still as possible which can be difficult (I was fidgety). You will be severely dehydrated but have to wait to drink. Eventually- about 20 minutes or so- they give you ice chips and then a cup of water. After that you can have juice, soda and some food. I had no appetite at all but ate some crackers. I recommend trying to get something in your stomach because you'll have a lot of drugs in your system. They also want you to stay flat on your back for an hour and then will raise your head 30 degrees two times after.
The doctor will then come in and tell you how the procedure went. He will not have the results of the hormone levels for at least 1 week. The discharge instructions are to avoid getting the opening infected and to watch for bleeding. He will not prescribe you painkillers, but he should. This to me is the oddest thing, because believe me, you will be in pain.
After you have recovered for 2 hours, they ask you stand to see that you can walk, then you get to go home. Again, make sure someone is driving you- there is no way you can, or should do this alone.
4th Part, At Home:
When you get home, you will be completely out of it. You'll probably just want to sleep which is what I did. I woke up shortly and vomited, this is not uncommon. There are quite a bit of chemicals in your system, and unless you eat a little at the hospital (which I should have), you can get sick. When you are home, you are advised to drink 16 oz of liquid to flush out the anesthesia and painkiller stuff in your system--do this.
Soreness is also expected, and mine began 3 hours later. I felt pain in places I didn't expect- like my arms and lower legs. The pain was overwhelming also in my groin area. Severe bruising started the next day, and is expected, but it's important to make sure it's soft, not hard. As well, check your bandage for excessive bleeding. I have no idea why they don't send you home with a day or two worth of painkillers, they really should. I took 600 mg of advil, and slept a lot.
You will be really sore for 3 days and then it starts to dissipate. One tip- DO NOT lift anything for the first 2 days. Seriously, I did this and paid dearly for it. Lots of pain.
The results come in about 5-6 days.
It's a horrible test, but once it's over, you're done. If you have to take this test, I hope this helps you and wish you luck!
To read more about the AVS procedure with complete medical terminology and explanations, go to:
http://radiographics.rsnajnls.org/cgi/content/full/25/suppl_1/S143
If you live in the Baltimore/DC area and need to have this test, contact:
Dr. Robert Liddell
Interventional Radiology
301 St. Paul Place, 1st Floor Tower
Dept. of Radiology
Baltimore, Maryland 21202
Phone: 410-332-9268 Fax: 410-545-4255
I finally had to have one of these intimidating procedures, the Adrenal Vein Sampling test (AVS). At this point, I would have done anything to help me get out of the hormonal hell I had been living in for at least four years. The surgeon I had met with last month felt pretty sure I was leaning toward surgery. All I knew was I didn't want to have to rely on so many drugs for the rest of my life. If I never had to take high blood pressure pills and potassium "horse pills" again, I would be eternally happy.
I had read all sorts of information about the AVS procedure on the web, how it's often difficult to get the catheter in the rightside adrenal vein, and sometimes the adrenals can get damaged. I also read that up to 50% of patients can have an unsuccessful reading. It all sounded very scary and risky to me.
I first heard about the test it when I went to my endocrinologist in early November. She highly recommended me having it, but she also said very few people perform them, as the test is very specialized and complicated. She only knew of one NIH trained doctor in the area who did them.
Even though I was getting sick of all the tests associated with Conn's, I started to think I should take it. And although I continued to scare myself by reading more frightening facts on line, I agreed to do it in November. I made a second appointment with my endo to get all the facts I could on the AVS. I recommend anyone with Conn's to do this--educating yourself about all the options and tests is crucial.
My doctor said the test was absolutely necessary to for me to take to ascertain whether the aldosterone adenoma was unilateral or bilateral, meaning- is it being produced by one or both adrenals. If it was unilateral, surgery was an option. If it was bilateral, surgery was not; I would have to take spironolactone for the rest of my life. I dreaded hearing this, but at least I knew where I stood.
Since the endo's AVS doctor recommendation failed, I ended up calling my surgeon friend who has been talking with me about Conn's. Since I first called him last summer, I have felt he is more knowledgeable about my condition than most of the doctors I have seen. He found a local radiologist who performs the procedure and set up the appointment. The doctors who perform the procedure are Interventional Radiologists. My particular doctor was trained at Johns Hopkins, and very familiar with my condition. Since I'm only mentioning in this blog the doctors who I highly recommend, I can say without hesitation both Dr. Sardi (surgeon) and Dr. Liddell (interventional radiologist) are two doctors I feel fortunate to have. Both are well-known experts in their fields, and both have staffs that are equally as professional and helpful.
If you looking for doctors in the Maryland/D.C. area, you should call these doctors. They both work at Mercy Medical Center, which is in the heart of Baltimore city. (contact info below)
THE PROCEDURE AND WHAT TO EXPECT
Before Surgery:
There really isn't much to do prior to the surgery. If you are on spiro, you must go off it (I luckily am not). After midnight, you cannot eat or drink anything. This includes water. You also can't take your BP meds the day of the AVS, so I suggest taking them right before midnight with a big glass of water. If you are like me, you are probably dehydrated often, so this part was tough, especially in the morning when all you want to do is drink a tall glass of H2O.
1st Part, The Preparation:
I when I woke up, I was exhausted because of my new, old friend-- insomnia. I was doing ok though, until around 9:30, when I was absolutely parched, and feeling the affects of no potassium in my system. This was grueling.
I arrived at the hospital, was admitted at 10:00 a.m., and by 10:30a.m., I was in a bed with a nurse explaining what I should expect. I had a companion with me; I recommend you take someone close to you that you can lean on. This is a serious test and it will become a pretty intense day for you quickly, you really should not go it alone.
You get your blood pressure taken first thing. You will also have your temperature taken. They stuck a weird instrument in my ear to get mine, it was very unusual.
Next, you'll get a catheter inserted (no, not fun at all). It is extremely unpleasant if you've never had one-- the first 1/2 hour feels very weird, with lots of pressure down there.
Since this is a procedure where another catheter goes into both sides of your groin, expect a "Brazilian" look to your downtown region, no matter your sex. Sexy, huh!
About 20 minutes later, you will then receive your I.V. for the anesthesia.
A nurse will take your blood pressure about 3-4 times before they wheel you in, as they want to make sure it's not high.
Soon after, the doctor arrives and he explains how the procedure works, how long it usually takes and what the risks are. Like I had read, the major risks are blood clotting, not being able to find the adrenals, which result in an insufficient reading-something you don't want to occur. I was thrilled when he didn't mention words like death or imploding adrenals.
2nd Part, The Surgery:
About an hour or so after being admitted, you will be wheeled in to the operating room where about 4 nurses are prepping for your surgery. They will clean and sterilize your groin area for a bit and then place a piece of heavy tape or plastic between your legs up to your chest. You will then be administered a sedative and anesthesia- mine was Fentanyl and something else. It takes very little time to get loopy and feel tired. There will be nurse at your side to make sure you are doing ok, and to answer any questions, or just hold your hand. The other nurses will be helping the doctor and cleaning/preparing instruments. I was surprised to see so many nurses, but like I said, this was a complicated procedure.
I was in and out of consciousness the whole time, and could see Dr. Liddell looking at a computer screen while operating the catheters. Towards the middle, my nose started to itch like crazy and I begged the nurse to scratch it. It was strangest feeling and it went on for a long while. She used a gauze to itch it but I asked if she could just use her rubber gloves because I knew they'd be more effective. It's evidently a side affect of the Fentanyl and it was very annoying. Towards the end, the doctor said he was having a hard time finding my right adrenal but wasn't going to give up, so I would have to be in there longer. I was in surgery for 4 hours, which is on the long side.
3rd Part, Recovery:
When they are done, you get wheeled back to your bed. You will be out of it for about 1 hour. The nurses will check on you constantly and see that you are ok. They are mainly concerned with hematomas (bruising, which I had) and clotting. You will be asked to keep you legs as straight and still as possible which can be difficult (I was fidgety). You will be severely dehydrated but have to wait to drink. Eventually- about 20 minutes or so- they give you ice chips and then a cup of water. After that you can have juice, soda and some food. I had no appetite at all but ate some crackers. I recommend trying to get something in your stomach because you'll have a lot of drugs in your system. They also want you to stay flat on your back for an hour and then will raise your head 30 degrees two times after.
The doctor will then come in and tell you how the procedure went. He will not have the results of the hormone levels for at least 1 week. The discharge instructions are to avoid getting the opening infected and to watch for bleeding. He will not prescribe you painkillers, but he should. This to me is the oddest thing, because believe me, you will be in pain.
After you have recovered for 2 hours, they ask you stand to see that you can walk, then you get to go home. Again, make sure someone is driving you- there is no way you can, or should do this alone.
4th Part, At Home:
When you get home, you will be completely out of it. You'll probably just want to sleep which is what I did. I woke up shortly and vomited, this is not uncommon. There are quite a bit of chemicals in your system, and unless you eat a little at the hospital (which I should have), you can get sick. When you are home, you are advised to drink 16 oz of liquid to flush out the anesthesia and painkiller stuff in your system--do this.
Soreness is also expected, and mine began 3 hours later. I felt pain in places I didn't expect- like my arms and lower legs. The pain was overwhelming also in my groin area. Severe bruising started the next day, and is expected, but it's important to make sure it's soft, not hard. As well, check your bandage for excessive bleeding. I have no idea why they don't send you home with a day or two worth of painkillers, they really should. I took 600 mg of advil, and slept a lot.
You will be really sore for 3 days and then it starts to dissipate. One tip- DO NOT lift anything for the first 2 days. Seriously, I did this and paid dearly for it. Lots of pain.
The results come in about 5-6 days.
It's a horrible test, but once it's over, you're done. If you have to take this test, I hope this helps you and wish you luck!
To read more about the AVS procedure with complete medical terminology and explanations, go to:
http://radiographics.rsnajnls.org/cgi/content/full/25/suppl_1/S143
If you live in the Baltimore/DC area and need to have this test, contact:
Dr. Robert Liddell
Interventional Radiology
301 St. Paul Place, 1st Floor Tower
Dept. of Radiology
Baltimore, Maryland 21202
Phone: 410-332-9268 Fax: 410-545-4255
Friday, 5 December 2008
The Saline Suppression Test
Taken in October 2008
This was test I had to take before the adrenal vein sampling. It seemed easy enough and I was thrilled I didn't have to do the real salt load test which is done at home. That one sounded hard core with all the drinking and salt tablets, as well as the blood pressure monitoring with no medical staff to check on you. If you can, get your endocrinologist to give you a slip for the saline suppression test. It's done in a hospital where nurses will monitor you often and see that you are ok.
This is a test where spironolactone has to be discontinued for at least 6 weeks. I also had to stop nipedifine, my high blood pressure med, but only that day. Also, if you are a big black licorice eater, you have to stop eating it because it oddly throws off the test.
I went to St. Agnes Hospital of Baltimore to have mine done. If you go to a hospital, the procedures are usually performed in the the infusion centers of the cancer department. There will be people getting blood transfusions and chemo. It can be a bit daunting if you have never seen or experienced that. It was a good experience for me, everybody (including the nurses) was polite and quite positive.
The Test and What to Expect:
1) You will go in early (7:30-9:00 a.m. at the latest) and stay for about 4 hours. You go in early because that's when your aldosterone is at it highest.
2) After you are admitted, you will sit for approx. 20-30 minutes and then a nurse will take samples of your blood. They'll be checking for renin, potassium and aldosterone levels.
3) The nurse will then take your blood pressure.
4) You will get an I.V. put into the opposite wrist or arm from where they took your blood. You will receive a catheter for the saline infusion. You will be expected to sit, not lay down, for the entire time. You can however, sit back if you are in a recliner chair.
5) A nurse will administer 1 of 2 bags of saline (.9% Liter). It will feel really cold going into your veins. The nurse said after a while I wouldn't feel it, but honestly I did the whole time. I was freezing and got some blankets- you may need to do the same. I recommend layering with a sweater and even a scarf, too.
6) You will be allowed to drink juice, water or soda during the procedure, but be careful, they are adding a lot fluid to your system and you'll start to feel like you have to go to the bathroom within a half hour. You are also allowed to eat food, they serve lunch around 11:30-12:00 p.m.
7) You will be there for 4 hours to receive all of the saline from both bags.
8) You will go to the bathroom often after the 1st bag is in your system. I went about 15 times during my visit- no lie. Make sure you have a sense of humor and try to get a seat close to the bathroom... mine was across the room and it was a real pain carrying that I.V. apparatus.
9) After you are finished, the nurse will take you blood again to compare against the earlier sample. She'll check your blood pressure too.
10) You get to go home. When you leave you'll be extremely dehydrated, so make sure to drink plenty of fluids (for as much as they put in you, you emptied out, trust me). Also, you'll have zero electrolytes, so I recommend Gatorade, and take it with your potassium pills. I felt very weak after wards, and my joints hurt. I also had a horrible headache, so I just went home and crashed for a couple of hours. Hopefully, you don't have to go back to work, you'll be very unproductive.
11) Your endo will call you within a week with the results.
This was test I had to take before the adrenal vein sampling. It seemed easy enough and I was thrilled I didn't have to do the real salt load test which is done at home. That one sounded hard core with all the drinking and salt tablets, as well as the blood pressure monitoring with no medical staff to check on you. If you can, get your endocrinologist to give you a slip for the saline suppression test. It's done in a hospital where nurses will monitor you often and see that you are ok.
This is a test where spironolactone has to be discontinued for at least 6 weeks. I also had to stop nipedifine, my high blood pressure med, but only that day. Also, if you are a big black licorice eater, you have to stop eating it because it oddly throws off the test.
I went to St. Agnes Hospital of Baltimore to have mine done. If you go to a hospital, the procedures are usually performed in the the infusion centers of the cancer department. There will be people getting blood transfusions and chemo. It can be a bit daunting if you have never seen or experienced that. It was a good experience for me, everybody (including the nurses) was polite and quite positive.
The Test and What to Expect:
1) You will go in early (7:30-9:00 a.m. at the latest) and stay for about 4 hours. You go in early because that's when your aldosterone is at it highest.
2) After you are admitted, you will sit for approx. 20-30 minutes and then a nurse will take samples of your blood. They'll be checking for renin, potassium and aldosterone levels.
3) The nurse will then take your blood pressure.
4) You will get an I.V. put into the opposite wrist or arm from where they took your blood. You will receive a catheter for the saline infusion. You will be expected to sit, not lay down, for the entire time. You can however, sit back if you are in a recliner chair.
5) A nurse will administer 1 of 2 bags of saline (.9% Liter). It will feel really cold going into your veins. The nurse said after a while I wouldn't feel it, but honestly I did the whole time. I was freezing and got some blankets- you may need to do the same. I recommend layering with a sweater and even a scarf, too.
6) You will be allowed to drink juice, water or soda during the procedure, but be careful, they are adding a lot fluid to your system and you'll start to feel like you have to go to the bathroom within a half hour. You are also allowed to eat food, they serve lunch around 11:30-12:00 p.m.
7) You will be there for 4 hours to receive all of the saline from both bags.
8) You will go to the bathroom often after the 1st bag is in your system. I went about 15 times during my visit- no lie. Make sure you have a sense of humor and try to get a seat close to the bathroom... mine was across the room and it was a real pain carrying that I.V. apparatus.
9) After you are finished, the nurse will take you blood again to compare against the earlier sample. She'll check your blood pressure too.
10) You get to go home. When you leave you'll be extremely dehydrated, so make sure to drink plenty of fluids (for as much as they put in you, you emptied out, trust me). Also, you'll have zero electrolytes, so I recommend Gatorade, and take it with your potassium pills. I felt very weak after wards, and my joints hurt. I also had a horrible headache, so I just went home and crashed for a couple of hours. Hopefully, you don't have to go back to work, you'll be very unproductive.
11) Your endo will call you within a week with the results.
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