Your Cleveland Clinic Experience And Input Please?

[Chaos]

I did a search on this site for info but still have a couple questions for those of you who've been to Cleveland Clinic.

I have an appt scheduled with Dr. Fouad-Tarazi in June for another TTT (ugh! The one done locally was an experience I hoped never to repeat.) Since I'm traveling from New Mexico will they schedule other tests for the same time or do I need to call and specifically ask for them? I really don't want to have to do this trip more than once if possible.

I was really hoping to see a neuro doc there that's familiar with the ANS stuff. There aren't any here locally. Is it possible to do that if you are referred by a cardiologist instead of a neuro? Any ideas on how to go about getting that set up?

It says on the paperwork to stay on my meds but I'm feeling so much better in general on the meds I'm afraid I'll pass the tests and they'll go back to thinking it's all in my head again. What was your experience with this?

If I suspect MCAD, do they recognize this at Cleveland? Should I stay on those meds too or would you stop those (Allegra and Zantac) and just stay on the Midodrine, Wellbutrin and Inderol? I realize you aren't doctors and can't give official advice. I'm just wondering what you've done or would do in this situation.

Also, how long should I plan on staying? It sounds like at Mayo people stayed a week or two, but I don't get the same impression from what I read about Cleveland. With only one appt. scheduled on the paperwork I got, I'm not sure what to plan for plane reservations.

Any input you have would be much appreciated! Thanks.

Cheri

[Christy_D]

We take my son to University Hospital in Cleveland, which has a full autonomic lab. His doctors scheduled several tests for our trip there. They organized it all to squeeze in as much as possible. We were told to stop medications before we came, I think like 5 days prior, in order to get accurate test results.

My son was treated by a neuro and gastro dr. I would think if you're traveling that far they would get done as much as possible to avoid repeat visits. Our doctors, after our visit, were also able to order some of his GI tests through our local hospital once we got back home.

[Chaos]

Thanks for your response. If anyone has further input or ideas of good places to stay in Cleveland, it would be much appreciated.

Thanks!

[Christy_D]

We have been to Cleveland four times and we stay at the Holiday Inn in Mayfield Heights on Beta Dr. It is 8 miles from University Hospital which isn't far from the Cleveland Clinic. We could stay closer, but we kinda like being out in the 'burbs. There is shopping not far up the highway with a cinema,etc. Plus the hotel has a really good Italian restaurant in it.

There are closer hotels but we liked the area. You can google earth to look at the area or mapquest from the hotel to the hospital to see how far it is.

[Christy_D]

I guess I should add, that we drove to Cleveland so we weren't having to take taxis or anything like that.

[sugartwin]

I live in Cleveland, and the Clinic was the first place I ended up being seen for POTS, which was undiagnosed at the time. I have to say that I had a negative experience.

That said, Dr. Fouad really is excellent at testing, and her nurses and techs are very familiar with dysautonomia.

[Christy_D]

I loved the doctors at University Hospital, since they not only diagnos but treat. Do you see Dr Chelimsky? We see both Chelimsky's for my son. They have been great. They even did an office visit in his hospital room so we didn't have to come back for another visit. We live in St Louis and I call her(Dr Gisela's) office for updates on how he doing on different meds. They are both very compassionate doctors.

[sugartwin]

I loved the doctors at University Hospital, since they not only diagnos but treat. Do you see Dr Chelimsky? We see both Chelimsky's for my son. They have been great. They even did an office visit in his hospital room so we didn't have to come back for another visit. We live in St Louis and I call her(Dr Gisela's) office for updates on how he doing on different meds. They are both very compassionate doctors.

I do see both Chelimskys and I agree that they are awesome. I was so disgruntled after my Clinic experience and it was so helpful to see him. He was interested in getting to the root causes of my POTS and after my mother and I showed him our stretchy skin, he referred me to the geneticist who eventually diagnosed my EDS. I think he's brilliant.

I've only seen Dr. Gisela once so far, but I find her to be just as attentive and compassionate as her husband.

[Chaos]

So do the Chelmiskys see adults as well as children? Guess I should look into that facility and see if they are in network for our insurance plan.

Thanks for the info!

[megan2]

I have been to the Cleveland Clinic, but it was for another reason, and I have not seen any of their dysautonomia doctors.

The Guesthouse has a convenient shuttle system to the hotel, which was nice. You pay more than if you were to stay in the city, but the convenience factor made it worth it for me. It is clean and smoke-free which the two criteria I have for hotels... The sheets are cheap, and it definitely is not a luxury hotel, but it was fine. Free parking right there as well.

The Intercontinental is a bit more expensive, and then there is a second Intercontinental which is even more expensive. Granted, they are nicer....I don't know what your budget is. Both are also located on campus.

It is my guess that if you're just scheduled for the one appointment, that you should be finished there by the end of the day and should be able to fly home that night. You can always call and ask...

[Christy_D]

So do the Chelmiskys see adults as well as children? Guess I should look into that facility and see if they are in network for our insurance plan.

Thanks for the info!

Dr Thomas Chelimsky is a neurologist, who sees people I think 12 and over. Dr Gisela Chelimsky is a pediatric gastroentrologist. Since my son's main symptoms at first were mostly GI related, we were referred to her, but we get to see both since he also has other symptoms as well(migraines,etc) They not only test, but they treat, which is great since we were unable to find a doctor here(StL) to help. They are both so nice, on our last visit she could see I was worn out and she just gave me a big hug. She said she was chronically ill as a child and knows what we are going thru.

(fun trivia fact- Dr Thomas Chelimsky was in the movie Charade with Audrey Hepburn and Cary Grant when he was a child)

[Chaos]

Christy- Thanks for the info. I'll definitely check them out. Does he have pictures of his acting career around the office? lol.

Megan2- Thanks for the tips. I'll look into them. After my tilt tabel that was done locally I couldn't have flown anywhere that night! lol. But I appreciate your info.

It does say on the paperwork that "you might be scheduled for other tests that are not listed" so guess I'll have to call to find out for sure. I just dread making calls when my brain fog is working it's magic. I HATE feeling like an idiot!!!

[Angelika_23]

I go to Cleveland Clinic and see Dr. Shields (he's an ANS neurologist). I like him very much. They did order extra testing after I got there. I guess they wanted to see me and my history and go from there. We stayed at the Guesthouse as well. It was clean and it had a shuttle to the doctor's office. Parking was free. My next visit with Dr. Shields is this summer, and I will stay at the Guesthouse again.

I have heard that Dr. Fouad (sp?) is great for diagnosing but not so good at follow up. I have never seen her, but a friend of mine's husband does. They have a hard time getting information and call backs from her.

I was also told initially to stay on my drugs, but when I called back and asked, they were shocked that I was told that and then told me to come off my meds. You probably need to call and verify that.

Good luck,

Angela

[Chaos]

Angelika-

Were you referred by a Neurologist to Cleveland Clinic or how did you get hooked up with Dr. Shields? I feel like my local cardiologist is dealing with my cardiac issues fine here but I'd really like to see a neuro there. I'm just not sure if a cardiologist here can refer to a neuro there??

Thanks,

Cheri

[Angelika_23]

I believe I just called his office and asked for an appointment. I don't think I had a referral at all. I know the wait time will be long, I had to wait a while for my first appointment. Even scheduling follow ups is 6 mos out at this point.

Good luck,

Angela

[Sophia3]

If you're getting a TTT you really need to be OFF meds to get an accurate reading. As Angelika said, CALL to clarify what you were told.

Communication issues in offices is rampant and I never believe what I am told unless verified by doctor.

i.e. I was told I could not TAPE my visit with one doctor visit and got his email and asked him. He said sure, I could bring in tape recorder so I have the visit on cassette.

Ya never know.

[MightyMouse]

Ditto to all here who have said no meds prior to testing (at least no meds that could potentially cause an effect on your heart rate or blood pressure)--and how long you're off them depends on what you're taking b/c some drugs take a while to clear your system.