Archive for the ‘Mayo Clinic’ Category

Mayo Clinic; Testing, Testing 1,2,3…

April 2nd, 2014 by Carrie, the Just Mildly Medicated gal

So my first appointment at Mayo had me in a little bit of a mood, then having to hang out for another day waiting for our insurance to authorize referrals left me a bit… well ironically, anxious.

We did get out around Rochester Tuesday, a burger place called Newt’s where things you haven’t imagined are happening. After a great lunch I was back to work. I called my insurance company, they told me I needed to have the referrals sent to my Primary Care Manager. I then called my PCM let them know to be on the lookout for the referrals and to submit them ASAP as I am sitting around in a hotel waiting. I then call Mayo to make sure they have the best numbers to reach my PCM, they say they don’t send referrals to the PCM only directly to the insurance company. I call the insurance company; tell them the referrals are coming straight to them and to please send the authorizations directly to Mayo at a certain fax number to expedite things. The insurance company tells me they can’t fax authorizations and they’ll get them in the mail ASAP. I explain that I am physically at the Mayo Clinic waiting; they counter that Mayo Clinic does not count as admitted to a hospital blah blah WTF… Apparently I am the first person EVER to go to the Mayo Clinic with my insurance.

Being a chronically ill patient is like swimming upstream. You’re never really done or get to the destination; most people don’t understand why you are still swimming at all. The answer is pretty simple, I am not going to get swept away.

I got a call at 5pm that day from Mayo and they had a schedule for me! I was so relieved to have a plan. Now it was time to get rolling.

Wednesday:

10 am Behavioral Health for an evaluation and discussion of Anxiety Disorders

1 pm 24 hour Holter and BP cuff Placement

2 pm Endocrinology Lab (titer as well as norepinephrine, epinephrine, and dopamine measurements)

Thursday:

8am Behavioral Health for an evaluation and discussion on possible Chronic Subjective Dizziness

10:30 am Audiogram/ Hearing exam

1:15 pm Stress Test with Oxygen Uptake

Friday:

8:45 am Autonomic Reflex Testing, Reflex Sympathetic Dystrophy (RSD) which includes QSART or “sweat test”, monitoring during simple maneuvers like deep breathing, then the finally of a 10 minute Tilt Table Test.

11 am Cardiology Health Clinic Consult

Testing that was scheduled but for dates I would no longer be at the Mayo Clinic:

Otorhinolarynology Vestibular Test or Balance Test (should be called Make You Dizzy and See What Happens Test)

Behavioral Health Follow Up

Neurology Follow Up.

After checking in to my first Behavioral Health Appointment  I am given the first of many red pagers. Each check in you’re handed a red pager that first vibrates than starts beeping when its your turn. I had to kind of laugh because it has been almost 20 years since I last carried around a pager, though for different reasons, willing it to go off.

Mayo pager

I loath psychology evaluations. I am an anxious over explainer (okay so that isn’t an actual diagnosis) so being asked to answer questions with a yes or no makes me sweat. Things like “Do you think about your health condition daily?” Well yes, every time I am symptomatic, but I am not sitting in a corner freaking out about it. To my HUGE relief I loved everyone at Behavioral Health. They stayed on task but we also had some fun. After several “well yes BUT” responses on my part the examiner and I agreed I likely had Wellyesbut syndrome.

Then it was off to get suited up for my Holter Monitor and BP cuff Placement. Many of us have been hooked up to holters multiple times, this was no different. The BP cuff was new to me though. I have a monitor at home but its a wrist cuff and doesn’t go off at timed intervals, that BP cuff goes off every 10 minutes during the daytime and every 20 minutes between 10pm to 7am. So much for a restful night…

Endocrine Lab I did measured several titers, vitamin, and hormone levels. For the norepinephrine, epinephrine and dopamine portion you are hooked up to an IV and then get to lie down in a dim and quiet room for about 30 minutes, then someone sneaks in and draws blood for the first measurement. After that you walk around for 10 minutes and go back and have another set drawn.

The next day’s Behavioral Health was painless as well. We covered a lot of information on Chronic Subjective Dizziness as well as more on Anxiety Disorders. There was a long conversation about the difference between being an anxious person due to personality traits verses suffering from an Anxiety Disorder and the physiological changes that happen in a person with Chronic Subjective Dizziness. It will take more conversations with my medical providers at home to decide if I am having psychological responses to dizziness or if I am dizzy because of physiological changes. The endless circle of trying to isolate if the chicken or the egg came first…

Audiogram DONE. I have two high pitch sounds that I am not hearing in my left ear but other than a zombie cricket invasion coming from the left side I think I am fine. My hearing wasn’t thought to be an issue so much as the hearing evaluation had to be passed before I could do the Vestibular Testing and I was on a stand by list for that.

Next was the stress test. Now the last time I did a stress test I had an episode of nonsustained Ventricular Tachycardia and I was in no rush to get to that appointment early.

my heart

Okay, a gal can only avoid something for so long… hooked up and ready to run… Okay walk, lets not get carried away. The tab for the ECG were attached and we did a few resting HR and BP readings. I made it 7 minutes into the stress test and it was stopped.

The Autonomic Reflex Testing or Reflex Sympathetic Dystrophy (RSD), was exciting. The other tests up until this point were things I could have done at home and some I had already done a few times, this one was new. Now my being excited to participate in testing that could help lead to a more detailed understanding of what was happening to me shouldn’t be confused with excitement to actually DO the testing.

I laid down and they made quick work of attaching padding to my left arm and leg explaining that these are sweat cells and they will put a mild electrical current that will activate the nerve and collect the sweat level.

“You know what guys, I think I’m good… maybe we’ll skip this one.”

No such luck, apparently they thought I was kidding. It was explained it will feel like a mosquito bite on the inside that I can’t touch, but only until I start to sweat and then it will ease up. Well my upper lip started sweating but apparently that was about it. It stung like several mosquito bites at each pad location and it stung the entire time. (Liar butts!)

Next was motoring HR and BP during simple instructions. They asked me to breath deeply for awhile, then we did very long forceful exhaling, and holding my breath. No big deal other than I started to see spots during that whole long forceful exhaling… I mean who does that?

Time for the roller coaster ride called a Tilt Table Test. Now mind you this is simple lying down on a table with straps over you for security and then the table rises to create a safe measurement of BP and HR during a postural change. The test is geared to see if a postural change triggers neurocardiogenic syncope, something not normally triggered by postural changes but more in extreme “stress” situations like people who faint at the sight of blood or the new father who passes out while his wife is giving birth. For some of us it just happens when we stand up.

Then I went to another Albott and Costello routine with cardiology.

Cardiologist “You are severely deconditioned. You’re in the bottom 25% for women your age with an inability to complete the stress test. you’re VO2 is severely decreased and you’re  max pulse pressure is much too wide. Nonsustained Ventricular Tachycardia for someone like you doesn’t surprise me but it shouldn’t be happening. At least your BMI falls somewhat in a normal range.”

Me “I had these same issues during my first stress test and I was working out regularly and was in no means deconditioned. I don’t believe I am deconditioned now. I work out a minimum of 3 days a week for at least 20 minutes. I’ve biked 100 miles in a week, I’ve done the 100 push up challenge, I love pilaties; trust me I’d much rather kick ass than not be able to do things. I only have these issues when trying to do anything upright, even walking, in fact I was walking the whole duration of the stress test. I don’t even believe in the BMI because it doesn’t take the physical structure of a person in account but I fall comfortably in the normal range. I bet I could last longer than you on the recumbent bike test.”

(not sure I recommend challenging your cardiologist to a race but I was pissed)

Cardiologist “You are severely deconditioned. You’re in the bottom 25% for women your age with an inability to complete the stress test. you’re VO2 is severely decreased and you’re  max pulse pressure is much too wide. Nonsustained Ventricular Tachycardia for someone like you doesn’t surprise me but it shouldn’t be happening.”

Me “I had these same issues during my first stress test and I was working out regularly and was in no means deconditioned. I don’t believe I am deconditioned now. I work out a minimum of 3 days a week for at least 20 minutes. I’ve biked 100 miles in a week, I’ve done the 100 push up challenge, I love pilaties; trust me I’d much rather kick ass than not be able to do things. I only have these issues when trying to do anything upright, even walking, in fact I was walking the whole duration of the stress test. I don’t even believe in the BMI because it doesn’t take the physical structure of a person in account but I fall comfortably in the normal range. I bet I could last longer than you on the recumbent bike test.”

After a few rounds of that my husband interrupted and said “Enough” the cardiologist and I both shut up. My husband asked the cardiologist what he recommended (exercise program 3 to 5 days a week no joke) and we left.

It was Friday afternoon and my last day at Mayo so we went and checked with Otorhinolaryngology to see if I could get in to do the Balance Test.

myfeey

Mayo Clinic; Dysautonomia chick still on her feet

waiting, waiting waiting… and I’m in!

Posturography was the first part of the Make You Dizzy and See What Happens test.

mypaper

Umm, safety harness… what…

Well I didn’t get harnessed, the older gentleman testing me just said “Don’t worry, I’ll catch you.” Hmm, all of a sudden being harnessed sounded like a better option but it ended up fine. The moving platform was just a foam pad that was unstable but not moving. It was kind of like Wii Fit only on thick foam.

Then it was on to Vestibular Evoked Myogenic Potentials, which means time for more electrodes, this time on my face and neck.

myfacewires

This test was only mildly annoying not difficult. A small ear piece is placed in your ear and you turn your head to one side and when you hear a sound you lift your head. the electrode measures small involuntary muscle movement that is triggered by your inner ear. The sound in your ear happens to sound very much like a helicopter is landing on you.

Next was a Videonystagmography; for this I wore goggles that had a camera inside recording my eyes as I followed a light across a screen, then in different positions with directions (like lie on your left side and look as far to the right as you can), next a cover went over the goggles so it was dark and I had to look left and right.

myfacegoggles

 

The last part was a doosy though. You lie down and the tester puts water in your ear canal. This creates involuntary movement of your eyes which is being recorded by the very heavy but fashionable goggle camera. The only thing is as soon as the water hit my ear the world started spinning. This is a pretty normal response but holy camoly I wish I’d been prepared for that.

After this we went to the last two appointments and tried to get in but weren’t able to. Those appointments were cancelled and we were told I’d get a phone call from the neurologist and then all of my records would be mailed.

Check this link for the results from the Mayo Clinic Testing.

If you missed it here is Day One of my Mayo trip.

Thanks for all of your support!