Finally, Appointment At Stanford! Advice On Cardiac Testing?

[DizzyGirls]

My daughters have finally been given an appointment at Stanford's Autonomic Clinic to see Dr. Jaradeh. I am so excited!! Their appointment isn't until November so I have some time to research, and mentally physically prepare the girls for the trip down there. They said there will come cardiac testing. Not quite sure what this is. Anybody been there and had this done? Was wondering what to expect. We've already gotten a special okay for them to be able to take their medicine the morning of the appointment. I spoke to the nurse and told her I wasn't being difficult, but that there probably wouldn't be an appointment if they couldn't take them. She finally got the hint that they are in a very medically precarious state. They work fast. After the insurance gave the ok, Stanford called within 48 hours to schedule the appointment. There were even a couple of calls from the Neurology department just letting me know where things were. I am hoping this cardiac testing doesn't throw them for a loop. We still have to get home!

Also, I'm hoping they don't have to have a tilt table test. Would the cardiac testing be enough to get definitive POTS diagnosis?

[SarahA33]

Dizzygirls,

That's great news, I know how long your family has been waiting on this appointment! I'm so excited for all of you.

I haven't been to Standford, I'm sure you could call the Clinic and ask to speak to one of their cardiac nurses there. When I went to the Cleveland Clinic for my initial work up and appointments, I was scheduled to have a tilt table. However, when he did the clinical exam and rechecked my vitals he said it wasn't necessary to put me through that. I think that is rare though, but I had the same concerns as you did.. my test was early and I still had to get through the rest ot the day and make it home in one piece, and I knew after the tilt I wouldn't be functional. I continued with the valsalva and autonomic deep breathing tests. At CC they were in set inlc the tilt.

Here's the link for CC's testing page just for some info, http://my.clevelandclinic.org/services/neurological_institute/neuromuscular-center/diagnostics-testing/autonomic-laboratory

I did find a page for Stanford's cardiac testing just incase you've not seen it https://stanfordhealthcare.org/medical-clinics/autonomic-disorders-program/autonomic-testing-laboratory.html

[DizzyGirls]

Hi Sarah,

Thanks for sharing your experience. I'll check out the links you sent! This appointment won't be easy, but I thinks it's our last resort. Just hoping the girls won't be subjected to too many tests that make them feel even worse than they do. Thanks for all of your support on this site!