Emory Sleep Center

[MJDK]

I live in Florida and had been looking forward to an evaluation at the Emory Sleep Center for 6 months. I had new patient appointment on February 24. I called in January to ask if they needed my medical records from my local doctors and they told me yes, I would need to mail or fax them before my appointment date. I mailed my records by UPS addressed to the Emory doctor at the address given to me by the receptionist, which is also the address listed on their website. I mailed the records on January 19 and records were delivered on January 21. I flew to Atlanta for my appointment 5 weeks later and the doctor did not have my records. It's now 2 weeks after my appointment, 7 weeks after my records were received by the sleep center, and no one seems to care one little bit. My records are misplaced or lost somewhere at the sleep center. My last two text messages through the patient portal have gone unanswered. I called 4 days ago and lodged a complaint (you cannot get past a phone operator for anything). She said "they" have 72 hours to respond to my concerns. 72 hours have come and gone and still no response. Horrible patient relations. Horrible. I would never go back there. And the question remains - where are my personal and confidential medical records? Was the appointment helpful for my RLS? No, not really --- even though my ferritin level is 42 - I am not a candidate for iron infusion because I am not anemic. Dr. Trotti spent about an hour talking to me about my RLS concerns, and my issue is not with her, it is with the incompetence of the staff at Emory Sleep Center.

[Rustsmith]

Please give a call to the RLS Foundation at 512-366-9109 and tell them about the problems that you have been having. They need to hear the feedback about one of their QCCs. Yours is not the first complaint along these lines that I have heard about Emory.

[badnights]

Please do follow Steve's advice.

What did Dr. Trotti recommend for you, if she wouldn't recommend an iron infusion?

[MJDK]

Thank you, I will contact the RLS Foundation on Monday. According to Dr. Trotti, Medicare will not pay for the infusion. She said I could try the Neupro patch which would cost me about $700 per month - - - and to take oral iron supplements. I'm just going to stay on the ropinirole and hydrocodone. And I'm taking the oral iron.

[badnights]

I've heard of people in other states getting the infusion paid for by having the doctor say you have an iron deficiency, which is true, it's a deficiency in the brain. Sound like Trotti won't try that, or has tried it and failed.

[MJDK]

I contacted the RLS Foundation and Karla did reach out to Emory and Dr. Trotti on my behalf. It seems that my records were delivered by UPS to the correct address at the Emory Sleep Center - - - but from the mail room to Dr. Trotti's staff - the records are misplaced or lost. There is absolutely nothing I can do about it. Dr. Trotti suggested that I resend my medical records to her, but I've already had my appointment - - - so what's the point? As far as not being a candidate for iron infusion --- all I can say is that despite my low ferritin level, Dr. Trotti did not think my insurance would pay, I am not anemic and she said the infusion is ridiculously expensive. It was a disappointment to spend all the money to fly there - - - and be exactly where I was prior to the appointment. I'm over it. Will not be going back to Atlanta.

[badnights]

Did she say how expensive "ridiculously expensive" was? Maybe it was something you could afford - - or maybe not. I am a little pissed at Dr Trotti for not even trying to get you covered. Hopefully in a few years iron infusions will be recognized as valid treatments for WED/RLS by insurance companies and doctors won't have to wonder and not try. Meanwhile - - I hope something works out for you.