1 More Week Until I Go To Mayo

[lorrie]

I have waited so long for my appointment at Mayo and it if finally almost here. I leave one week from Saturday!! I am excited and hopeful to get some good, useful information. I am also getting nervous about some of the tests they have scheduled. Most of all, I am upset because I got a new schedule in the mail today and I have been changed from an appointment with Dr. Low to Dr. Sandroni. I really wanted to see Dr. Low because I have heard great things about him. I pray that Dr. Sandroni is just as good.

It sounds like Ernie is having to wait a couple of weeks to get news...I was hoping to know something BEFORE I leave Minnesota.

I am busy getting things ready for the 12 hour trip to make it as comfortable as I can. Do any of you have any traveling tips? I have not traveled this far since becoming sick. We are stopping 1/2 way and staying overnight to keep it from being as hard for me. Riding is very hard on my various pain points. My doctor refused to let me fly because I pass out so often. He said I would be miserable and the flight crew would get all overly excited if I passed out on the plane. I wouldn't want to be the cause of an emergency landing...lol

[Ernie]

Hi,

Please don't be disappointed you don't have an appointment with Dr Low. He was my main doctor, the one who admitted me there and I only saw him twice for 5 minutes. All the interview was done through his fellow.

I checked the temperature on the internet and I got really warm clothes because it was about 15F when I was there.

If you can recline in your car seat that would help you.

Mayo is very well organised, polite and ready to help you.

Good luck

[firewatcher]

A cooler full of Gatorade and a bedpan/toilet paper. My dinky little six hour drive to Nashville was torture because of not being on the DI meds and having to "go" all the time, practically every exit! Maybe a blanket, your pillow and a smaller medium (12 inch) exercise ball to squeeze between your knees/hug, etc. to keep the blood flowing. Plenty of snacks. ALL your meds! where you can get at them!

Good luck!

[janiedelite]

I have waited so long for my appointment at Mayo and it if finally almost here. I leave one week from Saturday!! I am excited and hopeful to get some good, useful information. I am also getting nervous about some of the tests they have scheduled. Most of all, I am upset because I got a new schedule in the mail today and I have been changed from an appointment with Dr. Low to Dr. Sandroni. I really wanted to see Dr. Low because I have heard great things about him. I pray that Dr. Sandroni is just as good.

Hi lolo,

I just got back from Mayo, Rochester, with Dr. Fealey Feb 6th. I posted in detail about that visit earlier, so I won't bore you with the details. I had my first appt with him 1/28 (that lasted over 2 hours) and he ordered a bunch of tests. Then I followed up with him 2/1 to go over those tests, which was a much shorter visit at about 45 minutes. Some tests came back with very unusual results and he said I could go home and have my doctors order follow-up tests or stay if I wanted. Well, my hubby and I know how long it takes to get into a specialist back home, order the tests, schedule the tests, and on and on... So we opted to stay for another week of tests. But Dr. Fealey didn't have any follow-up appts open til 2/18 (he was leaving for a week's vacation)!!! We finished with my last test at 11am on 2/6 and let the receptionist in his waiting area know our situation and that we'd wait all day if needed in his waiting area if he could try to see us. Which he did! He saw us after his last appt at about 4:30 so I knew the results of all my tests before left for home.

Travel tips... well I flew (we live over 2000 miles from Rochester). I don't pass out, but I get super high levels of adrenaline after being upright for so long. I tried to stay hydrated, but I also had a stressfull and long day the following day (my first appt and full day of tests). I got really sick that night with a horrible migraine and vomitting. I stayed clinically dehydrated for over 3 days, but I couldn't take antiemetics because they would mess up my tests, and I asked at one of the tests if they could give me an IV but there were only techs there so I'd have to go to the ER and miss the test. So my advice would be to stay as rested and hydrated as possible!

I spent a lot of my time there waiting in waiting areas. Sometimes there is a gap of time between tests but you can check in early to the next test and not have to wait so long. The waiting areas are a little cool (at least to me). I'd bring layers with you. There are benches in most of the waiting areas, but not all. I needed to lay down, and would let the receptionist know and she'd usually bring me back and let me lay in an empty treatment room or something. There are lots of wheelchairs so make use of them if you need to. Mayo is used to accomodating travelling patients and have lots of people to help you or answer questions.

They try to group your tests so as to help you spend the shortest time there possible, but sometimes there is a day or two gap. In that case, you can actually go to the area where your test is and talk with the receptionist to see if there might be any openings and wait around, if you're able.

We liked Dr. Fealey, who also is under Dr. Low. He was very thorough. BUT they said it would just be a couple weeks til my records are sent to my docs and to me but no one has received them yet! I had an appt with my primary care doc today to go over the records that I had to cancel because there are still no records after 3 weeks. Also, they will automatically send your records to your primary care doc and you, but not to anyone else (even though my referring doc was my neurologist). You have to fill out a form to have them send your records to any other physicians.

Also, I had weaned off my florinef several weeks prior to my appointment, but I'd taken some pain meds and benadryl before going. Dr. Fealey really wanted all those meds out of my system before doing autonomic tests because they effect the central nervous system and might skew the results. I had only taken a 1/2 of a vicodin on the plane, though, and benadryl 2 nights prior so he let me proceed with the tests. He was mostly concerned about the sweat test since benadryl has some anticholinergic properties, but I sweated just fine (oh boy did I!). And I was having GI motility tests which the vicodin could interfere with so we just scheduled that test after all the others a couple days out.

Hope this helps! I learned a lot from my time there. It was worth the trip, the stress, getting sick, etc.

[hollie]

lolo,

I've seen two ANS docs at Mayo. Without getting into too much detail (or into any trouble) I will just say don't be too disappointed. Some docs took much more time with me there than others and took me a lot more serious. I wouldn't worry too much that you're not getting to see exactly who you want. I would say to keep your mind open. You'll probably still be satisfied with who you get. At least it's an ANS specialist instead of a cardio or nuero or...

Travel... I'm lucky enough to live about a half hour from Mayo and don't travel much. I think firewatcher had it right... a bedpan/toilet paper is probably what I would need most!

Hollie

[janiedelite]

Just got my records in the mail! My doc will see me next friday to review them.

[hollie]

Just got my records in the mail! My doc will see me next friday to review them.

Good news... I forgot to say that I too have been waiting since the 7th for mine from Mayo!

[Rachel]

I hope your trip goes well. I look forward to reading a report when you get back!

Travelling helps: Bring pillows and blankets. I prop pillows beside me and under my legs as necessary. Keep plenty of water, Gatorade, and snacks on hand. Wear compression. Bring music you love. Recline your seat and prop your feet up if possible.

All the best,

Rachel