IceSkate Posted November 3, 2011 Report Share Posted November 3, 2011 I got a call back from Mayo about setting up an appointment. They are sending a packet for me to fill out, and then will contact me back if they can see me or not.I have had multiple symptoms, as well as a tilt table test with a bpm increase of 30-60.They said since I have multiple symptoms, I would have to see an internist there first. Has anyone else gone to Mayo and had to see an internist before seeing someone for POTS?What department did you go to at Mayo? Autonomic neurology or something else? Thanks! Quote Link to comment Share on other sites More sharing options...
ACB Posted November 3, 2011 Report Share Posted November 3, 2011 I'm at Mayo right now. My cardio referred me up here. I've had appts in both neurology and cardiology for testing and feedback. I did not see an internist here. Perhaps they'd like you to see one because they recognize symptoms that may be outside the realm of POTS that may need to be checked out, too? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted November 3, 2011 Report Share Posted November 3, 2011 ACB - how do accomodations work while you're there? Are you an inpatient, staying at a hotel or traveling there daily from home? Just wondering what people do if they come from far away. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted November 3, 2011 Report Share Posted November 3, 2011 I stayed at a hotel that was connected to the hospital. My hubby came with me and helped me get around. The lodging was paid for by us, although my mom and aunt were kind enough to hold a fundraiser for our out-of-pocket costs. Quote Link to comment Share on other sites More sharing options...
momdi Posted November 3, 2011 Report Share Posted November 3, 2011 Michael saw Dr. Low straightaway, but was referred to Mayo by his electrophysiologist with a diagnosis of POTS. He never saw an internist or any other dept. That was in 2006.The hotels there are awesome, especially the ones connected to Mayo via the tunnels (the only way to go imo). The hotel staffs are all "Minnesota nice" and you don't have to give a checkout date when you book. They understand that you are there as long as the testing takes. Quote Link to comment Share on other sites More sharing options...
kclynn Posted November 3, 2011 Report Share Posted November 3, 2011 We stayed at Homewood Suites. It was nice, 2 separate rooms, and has heated underground parking. They also have a crock pot type dish during the week so if you don't feel like going out for dinner or cooking you can have that. It is a cross from St. Mary's but most of the autonomic stuff is in the main building. They have shuttles that run every hour to half hour, though so that is what we did. Middle of winter and they drop you off at the door. The sidewalks around the clinic were heated so no ice or snow there, either. Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 4, 2011 Report Share Posted November 4, 2011 I'm at Mayo clinic right now too. They are wonderful! I'm at the clinic in Jacksonville, Florida. Well, I saw several cardiologists who didn't know what was wrong, then I saw an ear, nose and throat doctor (for the dizziness) and he said he thought I had Dysautonomia and sent me to a cardiologist at Shands Jacksonville. Well, the cardiologist at Shands ended up sending me for testing at Mayo Clinic because they have the closest autonomic nervous system testing center to me. Once I was referred to Mayo I was sent to a cardiologist who ordered the testing and officially diagnosed me. So to answer your question I'd start with a cardiologist. I saw Dr. Lakshminarayanan K Venkatachalam. Long name but he is an amazing doctor. He goes by Dr. Venkat. Venkat referred me to a neurologist, who then referred me to a urologist and a gastroenterologist, so now I have quite a few doctors at Mayo. Quote Link to comment Share on other sites More sharing options...
Tarastomsgirl Posted November 4, 2011 Report Share Posted November 4, 2011 I'm at Mayo clinic right now too. They are wonderful! I'm at the clinic in Jacksonville, Florida. Well, I saw several cardiologists who didn't know what was wrong, then I saw an ear, nose and throat doctor (for the dizziness) and he said he thought I had Dysautonomia and sent me to a cardiologist at Shands Jacksonville. Well, the cardiologist at Shands ended up sending me for testing at Mayo Clinic because they have the closest autonomic nervous system testing center to me. Once I was referred to Mayo I was sent to a cardiologist who ordered the testing and officially diagnosed me. So to answer your question I'd start with a cardiologist. I saw Dr. Lakshminarayanan K Venkatachalam. Long name but he is an amazing doctor. He goes by Dr. Venkat. Venkat referred me to a neurologist, who then referred me to a urologist and a gastroenterologist, so now I have quite a few doctors at Mayo. I'm going to Mayo Jacksonville in 6 weeks to see Dr. Kusomoto and I'm hoping he'll refer me to someone else for this undiagnosed but very prominent autoimmue and or connective tissue disease I have. Is anyone willing to share how much they've spent seeing the docs? I have insurance that pays 80% but with me not working right now and my husband the sole income provider for myself and my daughter I'm afraid this is gonna break us (esp cause I go the week of christmas!) Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 4, 2011 Report Share Posted November 4, 2011 I can relate to having the insurance issues. Mine does pay but they're difficult because Mayo is out of network for me. I wish I could tell you more about specific rates but I'm not really sure. I've spent hours on the phone with tricare but the actual prices never came up. As for how much time I spend there, that depends on the visit. I usually visit for about a week at a time (I stay at a hotel on the campus). When I just have follow ups it can be a couple day visit with one or two 30 minute appointments a day, but when I have a lot of tests it takes hours at a time and lots of little check up appointments throughout. On busy days, I will start at 6 am and end around 2-ish. It really depends on what you're having done though. I have a lot of gastro issues so I've had some interesting tests. One took all day coming back every hour or so for more video (I had to eat a radioactive egg and then they videoed it going through my digestive system. My colonoscopy was another long affair because I needed to spend the day before emptying my system so I had to be in a hotel near a bathroom and not in the car driving. I hoped this helped somewhat. Oh, another issue you may run into is finding someone to stay with you after anesthesia. Try to plan ahead if possible because they can't release you without someone there.They are very good about working with you no matter what your circumstance, so after the initial throng it should slow down a bit. I think I've seen my cardiologist twice, the neurologist three times, urologist three or four times, and my gastroenterologist three times. By the way, if you have gastro issues ask to see Dr. Sami R. Achem!!!! He is absolutely incredible. He's like the grandfather I never had, so sweet and so great at making you feel better while fully explaining whats going on with your system. Quote Link to comment Share on other sites More sharing options...
Tarastomsgirl Posted November 4, 2011 Report Share Posted November 4, 2011 thanks. I do have someone going with me I'm just concerned on how long this is gonna take! I hope it doesn't take a week. I go in on Fri morning and from there I don't know. I live 7 hours away so staying a week isn't really do able for me esp because I have a 2 year old daughter and my husband cannot take off of work (Police officer) at all during the holidays! Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 4, 2011 Report Share Posted November 4, 2011 Good luck with everything! I'm sure they'll work with you so that you can schedule a few things at a time. Like I said they're excellent at working with patients. I like mine all at once because it take some travel time off my schedule (I can't drive long distances with the way my condition is at the moment...I always have to stop for naps (no joke) so the less I'm driving the better. And I'm only 2 and a half hours away! I can't imagine being 7! Quote Link to comment Share on other sites More sharing options...
janiedelite Posted November 4, 2011 Report Share Posted November 4, 2011 Do you have an out-of-pocket maximum? I did stay for a couple weeks, but most of that was for testing beyond autonomic issues. The autonomic stuff just took 3 days. Also, if you find that you have a time gap between testing, go early to that dept and ask if they can squeeze you in. They often got me in early which saves time. Sometimes they'd tell me that they may have an opening later, so I just sat in their foyer and waited. I don't know how much the autonomic testing was but all of my medical costs, prior to insurance payment, were about $20k. I'd imagine that the autonomic testing was about 1/3 of that, blood/urine testing probably another 1/3, and the rest was testing beyond the neurology dept. Quote Link to comment Share on other sites More sharing options...
ACB Posted November 5, 2011 Report Share Posted November 5, 2011 Naomi, my husband and I drove up from OK. We stayed at the Kahler Inn & Suites, which is connected via subway (underground walkway). I was seen on an outpatient basis M-F this week with multiple appts each day. Staying at a connected hotel was wonderful. I have cold sensitivity, so being able to stay inside was pretty sweet. Quote Link to comment Share on other sites More sharing options...
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