December 2008
It was suggested by my endocrinologist that I have an Adrenal Vein Sampling Test (AVS) to determine the aldosterone production values. I have read all sorts of information about this procedure on the web-- how it's often difficult to get the catheter in the right adrenal vein, and that sometimes the adrenals can get damaged. I also read that up to 50% of patients can have an unsuccessful reading. All very scary, risky stuff to me.
Feeling like a lab rat, I was eager to get to the next level of a prognosis, so I agreed to take it. I made a second appointment with my endo to get as many facts as I could on the procedure, and I recommend anyone with Conn's to do the same as this is a serious procedure.
Doctors who perform the AVS are interventional radiologists. The doctor recommended to me was also at Mercy, Dr. Robert Liddell. 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 are two doctors I feel fortunate to have. Both are well-known experts in their fields, and have staffs that are equally as helpful.
THE AVS PROCEDURE AND WHAT TO EXPECT
Day Before:
There really isn't much to do prior to the surgery. If you are on spiro, you must go off it. 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 some.
Day of Preparations:
The earlier you take the test the better as you will be parched and low on potassium. My procedure was at 11:00 but there were two hours of prep time.
Things should move fairly quickly once you are admitted. I was in a bed by 10:30 getting a lot of details of the surgery from a nurse. I'll stop here and say I recommend you take someone with you that you can lean on. This is a serious test and it will become a pretty intense day for you quickly, so you really should not go it alone.
The first thing the nurse will do is take your blood pressure. Then you will have your temperature taken. They stuck a weird instrument in my ear to get mine, which I wasn't familiar with.
Next, you'll get a catheter inserted (no, not fun). It is rather unpleasant if you've never had one-- the first half hour is uncomfortable with pressure. Since this is a procedure where another catheter goes into both sides of your groin, you will be shaved down there a bit.
About 20 minutes later, you will receive an 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.
Surgical Procedure:
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 go under. There will be nurse at your side the entire time to answer any questions, or just hold your hand. The other nurses will be helping the doctor and cleaning/preping instruments. I was surprised to see so many nurses, but like I said, this was a complicated procedure.
You may be in and out of consciousness during the procedure. I could see my doctor looking at a computer screen while operating the catheters. If you are like me, you may have an odd side effect of the fentanyl by your nose itching like crazy. Towards the end, the doctor woke me and said he was having a hard time finding my right adrenal but didn't want to stop and would it be ok to continue longer- I said yes which put me in there for four hours, a bit on the long side for this procedure.
The Recovery:
You'll return to your bed and will be out of it for about one hour. The nurses will check on you constantly checking for hematomas (which I had) and clotting. You will be asked to keep you legs as straight and still as possible which can be difficult. You will be severely dehydrated but have to wait to drink. Eventually- about 20 minutes or so- they should 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 eat a little something 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 one week. The discharge instructions are to avoid getting the opening infected and to watch for bleeding.
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- you won't be in the best condition to do this yourself.
Going Home:
When you get home, you will be completely out of it and want to just sleep. You may get ill from the fentanyl, which is still in your system. When you are home, you are advised to drink 16 oz of liquid to flush out the anesthesia. Saltines help too.
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 in my groin area. Big bruises appeared the next day and are expected, but it's important to make sure they are 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.
The Dr. said I would be fine in a day--but I was pretty sore for three days. One tip- DO NOT lift anything for the first two days. Seriously, I did this and paid for it...lots of pain. The results come in about 5-6 days.
While it a tough procedure, it will really help you see if surgery is your next step.
I hope this information 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
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36 comments:
Thanks for detailing your experience. I am having this done next week and was not really sure how it was going to be done. It sounds very unpleasant, but I guess it has to be done. I was surprised to know that your recovery took so long, the doctor told me that I would be fine 1 day after the procedure. I'm glad to have more info and to be more prepared for recovery time.
Thanks for the info. I am having mine done at NIH next week and will provide some comparison. I have read other accounts where pain was not such an issue - though these AVS procedures did not take as long. Also people naturally have different levels of pain tolerance which will lead to varying levels of discomfort.
So I just had my AVS done at NIH. It is a routine procedure here and my guy (Dr. Chang) has done hundreds with a very high success rate.
I am sorry your experience was so painful but I am wondering if it is the exception rather than the rule. I have had very little pain or bruising and the accounts on the Yahoo group for hyper-aldo seem to be more like mine.
Also for you guys out there: my greatest fear was having a catheter up my you-know-what to drain urine. I think if you go ahead of the procedure and can "hold it" you will be fine and they will bring a bottle for you to use right after if necessary.
Anyways, I just wanted to help alleviate the fears of some who think this is a guaranteed painful experience. It was not for me.
And as for scintigraphy (MaxJ), I understand it is better than CT scan at finding adenomas, but I am told sampling is the surest way to find out if your condition is bilateral or not. The NIH docs tell me you can have two adrenals - one with a small adenoma - and the AVS may reveal the adenoma is inactive and the excess aldo is coming from the OTHER gland.
So my recommendation is if you can find a GOOD radiologist who has done a LOT of AVS' that is still the way to go.
GGillan,
It sounds like you have had some better experiences than many I have talked in NORD and Yahoo groups in regards AVS and Conns. Good for you!
Having an AVS can be daunting if you've never had surgery prior like myself. It sounds like you got lucky with no bruising and no pain. I have a high tolerance to pain and was surprised at my soreness and black and blue bruises.
I believe that finding a radiologist knowledgeable with AVS is not as easy as you may think-- consider yourself blessed for being close to NIH and having such good experiences.
Thank you for sharing this experience. I found it very helpful in setting expectations as my own procedure approached. Mine ended up being painless, I did not have a urinary catheter, and I was not required to be off of aldosterone blockers. I've written an account at Hyperaldo Too: My Adrenal Vein Sampling. I figure as long as no accident takes place, anybody's experience will lie somewhere between yours and mine in terms of endurability. I'm also grateful for everything else you've written about your experiences as hyperaldo, since I recognize a lot of the effects you describe that aren't mentioned in traditional non-patient-authored sources.
Alden Gray,
Thanks for your comment and your link. Good for you for writing your experiences down about this disease. The more patients share, the better we can help one another.
Carole (Flower Spy)
I had my AVS yesterday and thought it might be worthwhile to post a link to my story here, for anybody who is searching for info on the procedure: http://waywardbus.wordpress.com/2011/05/07/post-avs-report
It was pretty uneventful and routine, which is everything I had hoped for. Today I'm a little slow in getting around but not in pain, and really relieved to have this behind me.
I had my AVS on yesterday and I'm pleased to say that it went very smoothly.The doctor alerted me to the fact that it could be hard to get into the right adrendal but that once they got in they would send samples to the lab to confirm that they were in the right place so that the test wouldn't have to be repeated.
Being a busybody,the worst part for me was the lying still for the 4 hours they required me to do but I survived and am sp glad that I am on my way to healing.
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Thank you so much for your informative blog. I have been going through all of the test for hyperaldosteronism and yesterday I finally had the AVS.
My experience has been similar to yours so far...more pain than I thought I was going to be in. However, It's tolerable.
The procedure was about four hours total due to the docs having some difficultly getting the catheter into the right spot.
The worst part was how much I felt like I had to pee (I was not given a urinary catheter)and there is not much you can do about it.
So, thirty hours later and still sore, no bruising though. Hopefully I will feel better tomorrow.
Once again, thank you for taking the time to blog about this! Its been a tremendous help to people like me who were very nervous going into this.
I had this test today. No urinary catheter was used nor was it necessary. It took about 1 1/2 hours. I have just gotten home and I have no pain. The only pain involved in the procedure was the needle stick for the IV. The procedure itself had zero pain. I only had to lie still for two hours after the procedure. I have been cleared to go to the day after tomorrow. This is not an unpleasant procedure at all. I had it done at Greenville Memorial Hospital in Greenville, South Carolina. My radiologist had done 4 of these procedures this year. Mine was the fifth.
Hi I was recently diagonised with hyperaldosteronism and was asked to go through AVS. Like what you said, there is very limited and scary information online. I am debating if I should go for it (or even the adrenalectomy), since my bp is able to control by 1 medicine (Norvasc 10mg), I felt tired but managable, was once in ER for low potassium 2.6 but it was over 3.5 average aftr i changed my diet.
I just received my result from an AVS done at Hotel Dieu in Montreal. I am scheduled for a CAT scan tomorrow but surgery has already been recommended. The procedure for testing is amazing and the expertise of the staff and the way I was cared for beyond any expectation. The procedure is a bit arduous but nothing unbearable. The staff here are proud that they have one of the highest success rates on first time testing 90% versus many other hospitals in Canada and the US which are somewhere between 50-70%. It is also the hospital where the procedure for laparoscopic adrenalectomy was first developed and performed. They've been doing them here since 1992. They are still "cutting edge" . Though my French is a bit weak and communication with some staff is at times confusing, I have great confidence that a dramatic improvement will soon take place in my health. Don't be afraid of this procedure, it can be a major step towards improving your life.
I was scheduled to have AVS in a few weeks time but having read these accounts of what a painful experience it is and having been told by the doctor that it only has a 50% chance of working I have decided against it.
Also, I am British and was due to have it done under the British National Health Service, as any British patient will confirm that means scant priority is given to patient comfort or dignity.
It really doesn’t seem worth going through all this just for an unreliable diagnostic procedure which even if it works will probably result in the decision to "keep taking the tablets"
I can't help thinking that a certain amount of careerism is influencing the decision to perform AVS. It’s a rare procedure and I can imagine ambitious doctors being keen to get one in their CV.
Will be phoning my endocrinologist after the weekend – I anticipate an argument but my decision is made.
Drdodger - I also live in the UK and have just had this procedure done today on the NHS, having read this blog last night.
It was useful to know what to expect, but my experience was very different from the one described above:
- i didn't have to stop taking my meds
- i didn't have to fast
- just 1 catheter
- it only lasted an hour
- 9 hours later and no pain or bruising
And regarding my 'comfort and dignity', i couldn't have asked for a better standard of care.
I suppose everything depends on how experienced the doctor is, regardless of whether it's private or NHS. Apparently the procedure is only performed at a few hospitals in the UK, and fortunately for me Leicester is one of them.
I would wholly recommend it as a potential means to an end.
I just an adrenal vein sampling taken at St. Marys Hospital through Mayo CLinic in Rochester MN. After reading all the horror stories out there - as those are the only ones I could find - I was so scared. I was admitted to the hospital - procedure area - at 6:30 am and the procedure started by 8:00 am. I don't remember much but the nurses being so thoughful and kind to all my needs. I was out of the procedure in 2.5 hours which was amazing. I recovered for about 2 hours and then walked around for about 15 minutes then I was released. It is the day after now and I have a small band aide over the incision and that's it. I will say that I threw up once I got home but I think that was from the knock out medicine and once I was done throwing up I was fine and slept for about 4 hours. I woke up and ate and laughed with my family - fell asleep for the night and woke up today. Today I showered and am still pretty tired and a bit foggy in the brain but I have no pain. I have been keeping my leg elevated and I am resting but I don't even have a bruise! I guess the main part that I wanted to share is - go to an experienced facility that does these a lot like Mayo Clinic in MN. Don't be scared I would do it again with the same technicians and doctors. Now I am just waiting for the results which will be done in 3 days at Mayo. Stay strong and trust that God is with you! God Bless
After reading all of these post I was worried about this procedure and what I was facing, I have never had any type of surgery and this was going to be my first experience. It is now the second night after AVS and I am happy to say the experience was not as bad as I had expected. Here is how it went; had the procedure yesterday, in the hospital at 8 am and was out by 3 pm, all seems to be ok a little pain the sedative they gave me was not that strong I think I was awake for most of the procedure, the hardest part of the whole thing was laying flat for such a long period of time after the sampling. I am sorry for those who had a harder time with this I look at it as a sample of what I need to prepare for in the next surgery.
Anonymous that went to Mayo. Would you share what Endo doctor took care of you there? I am heading there next month with an adrenal gland tummor, weird symptoms, my do thinks Cushhings, primary hypealdosteronism, pheochromocytoma or a serotonin secreting tumor. I feel like so much is up in the air and I just got done having my sigmoid colon removed, had a leak at my hookup and got an infection. 13 days later I get home from the hospital only to deal with a adrenal gland tumor that was seen back 2 years ago on a CT scan that I had for a GI problem. They kept telling me over and over again it was a fatty plug in my adrenal gland. Then I have doctors SEE all these weirdo symptoms that I have and someone says "Gee maybe that tumor is something." GGRR!
I had my AVS on this week at Johns Hopkins. I read all of these posts prior to the procedure and found many similarities in my own. Everyone at Hopkins was outstanding and very confident that the test would produce successful results to help determine if I am a candidate for the surgery. I was in surgery for approximately 3 hours and 40 samples of blood were taken during that time period. It was slightly uncomfortable but certainly tolerable ad I was able to return to work the next day. 3 days out I feel ok but still find I'm having what I would call a dull kidney pain. Other than that handling a normal load. I am anxiou to get the results so decisions can be made.
I had my AVS 5 days ago. Not the most pleasant of tests but bearable. Took about an hour and a half and 30 samples taken. I am in the UK and had it done at an NHS hospital in the North West. Couldn't fault the procedure but aftercare has been poor. Had to go to see my GP this evening as in quite a bit of pain. No bruising to speak off but dull aching in the abdomen, frequent urination and a change in bowel habit. I am also feeling very down and emotional. GP says its pretty normal to feel like this and to give it another week to see how I get on. Anyone else had the same?
I had this done last week and altho it was a little painfull it wasn't to bad, I did feel some pain on my left side while they were doing it but I was awake, no sedative just local at the iv sight, it took 1 hour and then I rested for 2 hours then went home, a little pain in the groin and some in my back but no bruising so all is good, don't know much about conn's syndrome as only just found out I have it, will have to look in to it more.
Mine was done in stockport, cheshire, same as you took 1 hour and very little pain, no bruising and straight home 2 hours after, we are lucky to have hospitals near by that do this well.
My AVS was done on July 22 (5 days ago). Still waiting for results. The procedure itself was WAY easier than I had anticipated. Had mine done at Group Health in Seattle Washington. The IR team was fantastic (I'm a RN and have high expectations for my healthcare). I arrived to hospital at 11:00am; 2.5 hours for pre-op stuff, 1 hour in IR and 3.5 hours post-op. Went home with family at 6pm. Felt great. I was told to take following day off work (since I am on my feet at work) but in reality I could have gone to work. Instead I slept in, had coffee with a friend, cleaned house, went for a run and worked for 4 hours in my garden. I have had no pain or bruising. Despite all my misgivings going into this procedure, my worries were unfounded.
Very good post. I am experiencing a few of these issues as well..
Just had my vein sampling two days ago and I’m glad I didn’t read this before! I reacted very badly to the sedative and couldn’t keep anything down, even water or ginger ale. I think my drs accidentally gave me a hematoma because it showed up in a ct scan afterwards. I feel sore all over and have a fever. Very unpleasant test for me, but mostly the after effects were the worst.
So sorry you had to go through such a bad experience with the AVS. It is not as easy for some as others. I was very sore for days afterwards. I hope you at least get some answers from it.
Carole
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Great article. I'm experiencing many of these issues as well..
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Very good post. I will be facing some of these issues as well..
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