Cleveland Clinic in May

[jonesnc]

I have an appointment in May with Dr. Faoud at the Cleveland Clinic. My orders seem to indicate a tilt table test and that's all. I had a TTT last year at a local hospital and it was positive, so I wonder why it is being repeated. Do they do it differently? What else can I expect to happen while I am there? Does Dr. Faoud take time to really listen? Does she ask good questions and spend enough time with her patients? It is an eight hour drive, so I want to make the most of my time. Anyway, I've wasted enough time with other doctors in the last two years! Any advice and insight would be appreciated. -Betsy

[LaLa4]

Hi,
I went to see Dr. Fouad for a couple days of various testing and she gave me more time and attention than any doctor I've ever been to.  She asks a ton of questions to get a full history, and make sure to tell her anything and everything you think might be relevant because she will take it seriously. She even waited for me while I was testing and called the test tech to see how I was doing.  Though she was very thorough, my only complaint was that while I got some more insight into my condition she didn't really explain the overall implications of everything on my life and lifestyle. I think POTS is just so convoluted and complicated that maybe that's just really hard to do. And I haven't been able to find any working treatments. But she does say that she sees improvement in most of her POTS patients with proper treatment.  
Heiferly is spot on with all the testing, ask ahead of time because you don't want to leave and have regrets or questions unanswered.
Let me know if you have any specific Fouad or CC questions, I'm happy to share any insight.
Good luck!!

[laurab2818]

I saw Dr. Jaeger at the CC about a year and a half ago for a full eval, like Heiferly.  Dr. Fouad gave me an interpretation of my TTT right after it. She was very kind and thorough. I think you will be in good hands.

Laura

[jonesnc]

Thanks so much for the great information. I will call Monday.

[Heiferly]

Because you're traveling far, you may be able to get them to book more of your tests into the one day instead of having you come back for more testing in a follow-up appointment.  They will likely want to repeat your TTT despite your having had one, providing it is at least a year old because the results can be different in that little time and they'll want the most current information they can get.  If I were you, I would call and explain that you have a long trip and ask if it is possible for them to schedule more tests in that one day so that you don't have to make as many separate trips.  (Other tests that they may be planning on doing are radionuclide hemodynamic and blood volume testing, heart rate variability/deep breathing and valsalva maneuver, and QSART.  It was my experience, though I went in through the cardiology branch of the dysautonomia center and you're going in through the neurology branch so your mileage may vary, that they used the TTT and radionuclide hemodynamic and blood volume testing to evaluate whether any of the further testing was warranted.  The heart rate variability/deep breathing and valsalva maneuver were used to evaluate whether further autonomic function tests such as cold pressor were warranted (I can't tell you the names of all of those tests, because in my case they weren't needed so I haven't had them.)  The QSART is used to evaluate whether a skin biopsy is warranted.)

I live closer to the CC than you do, but was able to have them schedule the TTT, radionuclide hemodynamic and blood volume testing, heart rate variability/deep breathing and valsalva (and if they had been needed, the other autonomic tests in that lab), and the QSART in one day.  I did, however, have an initial intake appointment with my doctor on a separate day before that if I recall correctly; again, your mileage may vary.  Still, the squeaky wheel gets the oil, so definitely call and ask to see if they can fit more into your day!

As to whether Dr. Fouad takes time to listen, I've heard many positive things about her from patients.  She is a renowned expert in the field and is known for a gentle, kind bedside manner and for excellent insight in helping to uncover aspects of patient cases that other physicians have missed.  I hope that you will have a good experience with her as well!