Status Post Adrenal Vein Sampling (AVS)

It's day 4 following my adrenal vein sampling (AVS) at UK Hospital.  I've experienced mild to moderate cramping and shooting pain in my stomach and groin area.  Friday night I experienced itching all over (side effect?) and coughing (didn't realize that was a side effect of the Versed until I Googled it).  Saturday was pretty much just shooting pain in the abdomen and more coughing (which doesn't suit well with the incision).  Today, I feel incredibly groggy and disoriented (and still coughing).  Trying to name simple objects has become irritating.  Items I've dealt with my whole life have become foreign to me.  I return to work tomorrow and I am worried.  I work with medical files all day making sure the best medical determination was made for people applying for disability benefits.  With the way I feel at the moment, I almost feel like the person that should be applying.  It's not a time to feel "out-of-it" because people's welfare is at stake.  

I've started having weird, almost life-like dreams.  I'm not really sure if this is a side-effect of the medications.  When I finally wake up, it takes a few minutes to decipher what's real and what's not.  This can be good or bad based on what type of dream I've had (i.e., driving in circles and being lost = not good; dreaming I'm married to an awesome guy = very good).

  
On top of the disorientation is impatience.  The waiting game to get my results is not kosher.  I will find out in one to two weeks what path my life is going to take.  Will it be unilateral and I can have my tumor removed or will it be hyperplasia and I'll have to be on meds for the rest of my life?  God PLEASE give me the strength to walk whichever path I'm placed on. 

My AVS Experience

My Adrenal Vein Sampling (AVS) was scheduled for November 6, 2014 at the University of Kentucky Hospital with Dr. John C. Gurly  (a cardiovascular surgeon).  I was told to be there at 8:00 am.  I wasn't allowed to eat or drink after midnight but was able to take my BP and thyroid meds that morning with a sip of water.  I arrived at 7:50 am and was taken back promptly.  I changed into the typical hospital gear and was prepped by about 9 nurses (four were student nurses) for my upcoming surgery.  I was questioned about allergies and gave them my meds (still in the bottles as it was their standard protocol).  I was then given an IV (in my left hand).  I can honestly say that this was the most painful part of my whole procedure.  I was then hooked up to a BP machine.  This machine would automatically check my BP about every 20 minutes.  The staff was super friendly.  They would bring me a warm blanket about every 30 minutes.  They would remove the top blankets, cover me with the warm blanket, and then recover me with the initial blankets (I'm cold-natured but they made sure I stayed warm my entire stay).  They even brought warm blankets for my mom and my daughter.  Around 9:30 am two nurses came in and shaved my groin area to prepare me for the AVS.   Around 10:00 Dr. Gurly came in to go over my paperwork and to get my consent.  He then explained the procedure to me and explained that not every hospital does this procedure (because it's so complicated) and that he was the only surgeon at this hospital that performed this procedure.  He explained there was a chance that the procedure might have to be repeated due to the right adrenal gland was a gland that was hard to get the catheter into.  He explained that he had a 88-90% success rate without having to repeat procedures.  He gave me a chance to ask questions, allowed my mom to ask questions, and joked around with my daughter (cool points for him).  Around 10:15 I was given a shot of Fentanyl through my IV port for pain (that was painful).   Around 10:30 I was taken back to surgery.  I was stripped down to my birthday suit in the surgical room (except for a towel across my breast area).  I wasn't yet sedated and it was quite embarrassing.  Soon the surgical nurse attached the Versed (conscious sedation) to my IV and I the loopy feeling began.  I was never completely out of it but felt in a phase that I didn't care what happened.  I remember the surgeon giving me the shot (in which he warned me there would be a pinch).  It wasn't as painful as the IV.  After that I was wondering when he would get started.  It was only after I heard him talking to the staff with excitement (apparently my right adrenal was easier than most to get to) that I realized he was already doing the procedure.  I couldn't feel a thing (thank the Lord).  When the procedure was done he smiled at me and told me that he was 95% sure that the procedure had been successful.  

I was then taken back to my room at 11:30 for recovery.  I had to lie still for 2 hours.  I still had not eaten and I was tired so I drifted in and out of sleep until around 12:55 when the urge to use the restoom became great.  When they advised that I would have to use a bed pan I was determined to suffer until 1:30 (in which time I could get up) because that was just too much embarrassment for me.  I held on until around 1:15 and then I couldn't take it anymore (forget the embarrassment!!!).  They checked with my surgeon and he gave the go ahead to release me to the bathroom.  One last wound check (bleeding had stopped) and I was allowed to attend the restroom and then go home.  I was given a turkey sandwich as a parting gift.  

I can't say enough about the entire cath staff at UK Hospital.  They were warm, caring, and genuinely concerned with my well-being.  The experience was made so much better because of them.  

My Experience

In January of 2014 I started experiencing severe stomach pain.  Not a stranger to pain (have been dealing with Fibromyalgia, endometriosis, and a fibroid tumor for years), I decided to self-treat myself.  I tried a series of detox programs and yeast medications.  It seemed that each treatment was successful for a short time.  

In April of 2014 I decided to embark on a weight-loss journey even though past attempts (due to hypothyroidism) had been unsuccessful.  I was losing weight at a steady pace.  In July 2014 the tables turned and I started gaining weight (10 lbs. overnight), blood pressure spiked, and the pain returned full force.  Unable to deal with the pain, I finally broke down and went to the doctor.  After a series of questions it was decided I would go for a CT scan.  In July 2014 I underwent a CT scan.  I received a call about a week later that they had found something that looked like a tumor.  To be sure, they scheduled me for an MRI and an abdominal ultrasound in August of 2014.  This report revealed a tumor on the left adrenal gland that was not typical of a typical adenoma that was 2 cm.  My treating physician wanted me to see a surgeon.  Not wanting to drive long distance, I scheduled an appointment with a local general surgeon.  BIG MISTAKE!!!

THE FIRST SURGEON:

I arrived at the surgeon's office 15 minutes prior to my scheduled appointment.  I completed the paperwork and proceeded to wait 1 hour and 15 minutes to be seen.  While waiting in my exam room I heard the surgeon go into the next office.  He was in there less than 5 minutes and was done.  I thought to myself, "this can't be good".   The surgeon then quickly entered my room with a file.  He sat down, laid the file on the table and then proceeded to tell me that my treating physician didn't know what it was and then got up to leave.  Really????  I stopped him.  Little did he know I already had a copy of my medical records and knew exactly what it said and what he said was not it.  I asked him about my stomach pain.  He said the tumor was an "incidental" finding and that it could not be causing my stomach pain.  He suggested it was probably gastrointestinal.  This man had not laid one hand on me to examine me or make a diagnosis so I guess his second job as a psychic was in gear.  

I then asked him about running the test to check for hormones especially since my blood pressure (BP) had suddenly spiked and my leg pain (which I suspected was from low potassium).  He asked my about my BP meds (which was already written in the file).  He said he would order the Dexamethasone suppression test.  He then got up to leave.  As he opened the door, he turned around one last time and asked again about my BP meds and how long I had been taken them and then left the room.  An assistant came in and gave me a paper to take to the hospital and then a script for the Dexamethasone.  She told me to take the pill before midnight and then go the next day to get the test (no other instructions).  I decided to Google the procedure when I got home.  I found out that because my BP meds contain a diuretic that it would affect the results of the test.  I also found out that the med had to be taken at 11:00 pm (with food) and that the blood had to be drawn at 8:00 am for the best results.  I decided not to take the test and to seek an opinion from another surgeon.

THE SECOND SURGEON

I started a search online, determined not to be shafted again by a crooked physician.  I actually searched for someone in the endocrine field and came across Dr. Cortney Lee at the University of Kentucky Hospital.  She is an endocrine surgeon that specializes in the adrenal glands.  I scheduled an appointment through my treating physician's office. 

Upon my appointment, I presented with severe chest pain.  Not wanting to be placed in the hospital, I failed to mention it to the surgeon.  Turns out my BP was 156/109 (not good).  Dr. Lee's assistant physician did a thorough examination asking lots of questions.  Dr. Lee ordered several tests - including the Dexamethasone suppression test.  She stated it would take several weeks to get the results.  The wait was long.  Turns out my renin activity is low and my aldosterone is high.  Diagnosis: hyperaldosteronism.  An adrenal vein sampling (AVS) was scheduled for November 6, 2014 with a tentative adrenalectomy scheduled for December 18, 2014.  Treatment will be based upon what the AVS reveals.

The waiting game begins.........

What is Adrenal Vein Sampling?

Adrenal vein sampling is performed to help diagnose conditions associated with with excess aldosterone or aldosterone deficiency.  

What happens during the procedure?

This test is usually done by an Interventional Radiologist.  You will be asked to lie flat on your back. Conscious sedation is provided during the procedure.  You will be monitored throughout the procedure.  The procedure may either be done through the neck or groin.  The area will be cleaned with antiseptic.  Towels and drapes are placed over you to create a sterile work environment.  Lidocaine is injected into the right groin.  Contrast dye is injected to allow visualization of the vessels.  The contrast dye will create a brief, warm feeling throughout the body.  Blood is then drawn through a catheter from both adrenal glands.  Once the procedure is done, the catheter is removed and pressure is applied for about 15 minutes over the vein to stop the bleeding.  The procedure lasts about 1-2 hours.  You will be asked to lie flat on your back for 2-4 hours during recovery.  Based on if you are bleeding or not will determine when you will be allowed to leave the hospital.

What is Hyperaldosteronism (aka Conn Syndrome)

Hyperaldosteronism (aka Conn Syndrome) is a condition in which the adrenal glands produce too much aldosterone.  Aldosterone is a steroid hormone (mineralocorticoid steroid) produced by the outer section of he adrenal cortex.  Aldosterone causes the kidneys to retain water and sodium, increase the blood pressure, and lower potassium.  It can lead to heart disease and kidney disease if not treated. 

Too little potassium is called hypokalemia.  Signs of hypokalemia can include: muscle weakness, myalgia, and muscle cramps.  It can also cause arrythmias.  More severe cases can cause flaccid paralysis characterized by weakness or paralysis and reduced muscle tone.  It can also cause hyporflexia characterized by below normal or absent reflexes.

Primary aldosteronism was initially thought to be caused by an adrenal adenoma, also known as Conn's Syndrome.  Recent studies have shown that bilateral hyperplasia (both adrenals producing aldosterone) is the cause in up to 70% of cases.  Primary aldosteronism is treated with removal of the adenoma.  Bilateral hyperplasia is treated with meds: usually spironolactone.  

Symptoms to look for:

-Fatigue
-Headache
-High Blood Presure
-Hypokalemia
-Hypernatremia
-Intermittent or temporary paralysis
-Muscle spasms
-Muscle weakness
-Numbness
-Polyuria
-Polydipsia
-Tingling
-Metabolic alkalosis

Diagnosis is usually made with a blood test that shows the level of aldosterone is high and the level of renin activity is low in primary aldosteronism and high levels of renin in secondary hyperaldosteronism.