Jump to content

Mayo Clinic Appointment


ken870
 Share

Recommended Posts

can someone please tell me why it is taking me so long to get an appointment to the mayo clinic in minnesota for pots treatments i have been on the waiting list now for the last six months and they tell me it could be six months or a year longer.

Link to comment
Share on other sites

Haha beats me! I guess they are busy!

I was really blessed to get an appointment when I did... I called in may and got one for september 8th!

I guess what happened was I called different doctors (a cardio, a neuro, a pots specialist) and begged them to take my case. The neurologist said yes and gave me the earliest appointment. I figured, well, once I can get in, maybe it will be easier to get where I need to be.

Although if you already have a doctor there this reply isn't helpful at all! :)

liz

Link to comment
Share on other sites

Has your doctor sent them a letter asking you to be treated? That definitely helps. Also, you do want the neurology sub-specialty group for POTS. Have you considered going to a different clinic? We have a specialist at the clinic here in Scottsdale, AZ, and I know his appointments are only 4-6 weeks out right now. His name is Dr. Goodman, and he just transferred from Minnesota. He's very good....I'd try that if I were you.

Good luck!

Link to comment
Share on other sites

Have to agree with potsgirl. Just got an appt. with Dr. Goodman ourselves for the end of Sept. We could have had one in a couple of weeks but that didn't work for us. Michael is not a new patient, so that might make a difference, but I still think Goodman has good availability since he just moved back here from Rochester. The AZ Mayo website is also now (finally) saying that treating POTS is one of their services and lists Dr. Goodman's research interests as POTS. WOW! Yay!

Michael saw Dr. Low rather quickly (weeks) back in 2004, when others were saying it was taking months and months. He had a referral from his EP, so don't know if that helped. The response that you got seems pretty unusual. Are you asking specifically for Dr. Low? Also, Michael was the same age and gender as Dr. Low's son who has POTS, so that might have helped too. Who knows how they choose....

Good luck to you. The appointment at Rochester was very helpful to understanding Micheal's POTS, but I can't say much for their follow up. Get all the info that you can while you're there.

Link to comment
Share on other sites

I would actually have you consider flying to Scottsdale AZ and see Dr. Brent Goodman. The hotels and such are SUPER inexpensive as it's off season. Dr. Goodman having just left MN for AZ does have availability currently that is not the usual 6 mos. to a year wait. This is a huge bonus for those wishing to see someone that's an EXPERT and extremely gifted. Once diagnosed and tx plan given then perhaps you could fly home and do follow up with one of the people he suggests as he used to work there in MN. The airfare isn't all that bad.....if you do need to see someone soon. Anyway I only mention this as it's an unusual window to see someone in less than 6 mos. to a year - he's the best I've come across in a long while - & again to stay a week or two in AZ can be an amazing experience.... Blessings in whatever you decide to do! Rooms are going for 30 bucks a night that are RESORTS :-)

Link to comment
Share on other sites

I waited four months to see Dr. Low, but it changed my life in that I had a DIAGNOSIS FROM MAYO. My primary care said that he could care less about diagnoses from people he considered "unknowns" such as Dr. Grubbs, but that was a very crucial piece of paper in my treatment. I did have a letter from my neuro and the Cleveland Clinic sent.

HOWEVER, I was willing to come to Mayo in JANUARY. MANY of my doctors have confessed that "normal" people have a time getting into the Mayo during warm weather periods because then Mayo is full of foreign millionaires that are catered to before the rest of us. Big bucks can help you avoid the frigid cold of Rochester's winters.

I saw plenty of evidence while there to prove that this is true.

WARNING: I got a great diagnosis, but Dr. Low told me that he would NOT treat me. So the entire trip, which costs me a fortune and made me very sick from the cold and air travel, was only good for the piece of paper he gave me.

Feel free to PM me about my experiences, which really were not very good.

Good luck!

Edited by MightyMouse
Link to comment
Share on other sites

mayo in minnesota has my medical records there and they tell me when they had an opening i would see either doctor low,fealey or sandroni but the main thing i am discouraged about is my records tell them i have severe autonomic neuropathy,pots and peripheal neuropathy yet i am having to wait this long and i am bedridden and in a wheelchair when i go out anywhere.p.s. if i wanted too how would i get my records transfered to the arizona clinic and does the arizona clinic take medicare.

Link to comment
Share on other sites

I waited 13 months until I was finally able to get an appointment in Rochester. I called every six weeks or so to check on my status and they never had any answers for me. It wasn't until I was my cardiologist and gastroenterologist from UPenn to call again (their 2nd call each) that I was finally offered an appointment for the following month. I would definitely ask your referring physician to call on your behalf.

I didn't see any of the doctors that other members usually list and I won't mention his name, but he was not understanding at all. He is supposedly in the Autonomic Dysfunction subspecialty group, but I would think that someone who works with this disorder on a daily basis would be a bit more understanding with his patience. Unfortunately, I wasn't given any recommendations after an 18 day visit. I was only told what NOT to do!

I hope that when you finally get your appointment, you have a positive outcome.

Link to comment
Share on other sites

I would just Google the Mayo Clinic Scottsdale/Phoenix and get your information phone numbers that way....or call the MN Mayo and ask them for the numbers to the Scottsdale scheduling department if you don't have a computer. Then tell the scheduling department your story. They'll probably want to know who it is you wish to see ~ and depending upon your insurance - you may or may not need a referral from a local doctor you see. Then I'd expect to have to provide by mail or fax the Scottsdale Forms that they will mail to you. Not any different I suspect from what you did to get into the line-up for scheduling up in MN. It would be really nice if the two locations worked together .... but I don't know that they do. If they did - it would be nice if the MN schedulers could call AZ and speak with them about availability for you. Dr. Goodman is in the neurology department. I overheard people in line for tests and such mention that they were using Medicare - so it's heresay only - but my guess is that Scottsdale is an elderly or approaching advanced age community for a large portion of folks...who would be using Medicare. It was at least 115 degrees outside this past week or so ... so if you cannot handle heat - be forwarned. I have found it not problematic which is a blessing. I hope you get the care you need and deserve sooner rather than later -- good luck to you.

Link to comment
Share on other sites

mayo in minnesota has my medical records there and they tell me when they had an opening i would see either doctor low,fealey or sandroni but the main thing i am discouraged about is my records tell them i have severe autonomic neuropathy,pots and peripheal neuropathy yet i am having to wait this long and i am bedridden and in a wheelchair when i go out anywhere.p.s. if i wanted too how would i get my records transfered to the arizona clinic and does the arizona clinic take medicare.

I'm just curious -- I was under the impression that much of what Mayo does for folks is give them the diagnosis that seems to best fit ... the diagnosis that you list are pretty sophisticated....(my docs of a local grouping had no idea what POTS was or dysautonomia etc and they were specialists)... So as you already have these diagnosis.....are you looking to get a treatment plan as the people who diagnosed you are unwilling to help you out? Did you know that when you saw them and they gave you that boatload of diagnosis? Or do you doubt the diagnosis and wish to get confirmation? I would think it shameful if a doctor gave you that serious laundry list of problems as diagnosis and not go to bat for you to get the earliest possible appointment for treatment options if they themselves could not tell you how to treat their diagnosis....

Link to comment
Share on other sites

I read months ago Arizona Mayo no longer ACCEPTING MEDICARE...so need to be sure.

I've also read MIXED reviews on Mayo, some great, some not, some horrible.

Not sure HOW Dr. Blair GRUBB could be called a "nobody" in the world of dysautonomia.

Good luck Ken. Sounds like you're in a tough situation. . . sigh.

p.s. not sure what to make of this new upgraded site. Very discombobulating and looks COMPLETELY diff in my browser...plus I have visual challenges now and get easily overwhelmed :(

Link to comment
Share on other sites

If you google medicare and the mayo clinic scottsdale it comes up with a page that describes how Mayo AZ does not have to accept medicare assignment for payment - so you end up paying whatever amount is over and above what medicare pays....kind of end of story I guess? It also said that people with medicare advantage programs must choose one that is hooked up with the Mayo clinic team specifically --- so it sounds like you have to choose wisely should you need the services here & you are about to start disability or regular medicare...and even if you choose the right one - Mayo is again not accepting medicare assignment - and are free to charge whatever they want for most (but not all services) some things like hospital charges and others - Mayo does have to accept assignment - it was an informative read from the mayo website.

Link to comment
Share on other sites

nowwhat my neurologist gave me this diagnosis but said she could not treat me and referred me to mayo in minnesota because in her words it was the best place for me to go for treatment and my cardiologist agreed you see they know about pots and the autonomic nervous system but said i needed a specialist.

Link to comment
Share on other sites

As far back at a month ago Mayo Scottsdale was still accepting Medicare, because that's the only insurance I have. You end up paying 15% over what your normal charges would be at a place that's not so well-known. I think that Mayo is great for diagnosing, and you can go back and be followed somewhat, but they're really not for day-to-day treatment. Again, Dr. Goodman was great, and you could get in pretty easily if you can make it there. You'll have to double-check on the insurance, and then find someone for more routine follow-up. I would guess Dr. G could suggest someone in your area. Also, Cleveland Clinic is very good, as are some of the recommended doctors/clinics listed on this site.

Good luck!

Link to comment
Share on other sites

Mayo stopped seeing patients with Medicare at some of their primary care clinics. That is different from the kind of diagnostic or specialty groups that we are all talking about here. And they still accept Medicare at their hospital (ER and in patient stuff).

I agree that you must contact Mayo to best understand their most current policy (seems to be evolving AWAY from medicare). POTSgirl's explanation seems right in line with what I read on their website. My question to her point is - if there is such good coverage with Medicare only, why would anyone pay for any secondary insurance to Medicare?

However, since my husband has also been recently ill, we are at Mayo Scottsdale or Phoenix every week, and recently daily, and it is literally overrun with well-dressed elderly people. If they're not taking medicare, then Mayo must be the greatest concentration of wealthy, private pay patients in the world ;) And at Mayo prices, they would have to be wildly wealthy. And if they totally stopped taking Medicare, then my guess is that they would lose 90% of their patients right there. LOL.

Link to comment
Share on other sites

Mayo stopped seeing patients with Medicare at some of their primary care clinics. That is different from the kind of diagnostic or specialty groups that we are all talking about here. And they still accept Medicare at their hospital (ER and in patient stuff).

I agree that you must contact Mayo to best understand their most current policy (seems to be evolving AWAY from medicare). POTSgirl's explanation seems right in line with what I read on their website. My question to her point is - if there is such good coverage with Medicare only, why would anyone pay for any secondary insurance to Medicare?

However, since my husband has also been recently ill, we are at Mayo Scottsdale or Phoenix every week, and recently daily, and it is literally overrun with well-dressed elderly people. If they're not taking medicare, then Mayo must be the greatest concentration of wealthy, private pay patients in the world ;) And at Mayo prices, they would have to be wildly wealthy. And if they totally stopped taking Medicare, then my guess is that they would lose 90% of their patients right there. LOL.

Laughing - I can so relate to the upper eschalon of clientele I see at Mayo....but I also see others with less visible signs of the dreaded "wealth" lol.... What I was overhearing was patients with Medicare in the line-up on the floors & with other insurances as well. So if traditional Medicare is an 80/20 plan - the gap policies pay the 20.... But then the 15% more is loaded up onto the patients bill.... I guess I'm reading into this that mayo's EKG price is more than say a county hospital EKG for the same test? I guess it's a good thing that there is a cap at 15% over Medicare's payment out - well that's what I'm understanding so far right or wrong... My most recent worry about Mayo's billing is that if it is exhorbitant in comparison to other places - even if my current insurance is a provider -- and if I've paid my out of pocket max for the year - right when the insurance should pay 100% -- the fine print is often they will pay 100% of the usual and customary rates of reimbursement for charges.... Pretty scary to think I jumped into this thinking I'd be pretty much covered for a lot of what's done...to end up owing a ton because they charge too much. But I guess I'll pray for the best possible outcome and deal with the fallout when it happens down the road!

Link to comment
Share on other sites

Hi. I think being on the waiting list is the same thing as them saying they can't see you. Usually when they accept you as a patient, the wait isn't more than a couple of months. I know this because I was "rejected" i.e. waitlisted, but I sent in new paperwork and then got a call asking me to make an appointment.

Link to comment
Share on other sites

Hi MomDi~

Just to clarify, Medicare pays their contracted rate to Mayo, then I would pay what Medicare doesn't cover PLUS an additional 15% of the total costs. So it's not great, just doable for at least some folks.

Cheers,

J

Link to comment
Share on other sites

  • 2 years later...

I just wanted to share for anyone who may look through this topic, wondering what to expect at Mayo Clinic in Rochester, that I had a wonderful experience. I had two insurances when I went. BCBS of IL was my primary and BAS was my secondary. I felt so blessed because all of the tests and appointments came to a total nearing $20,000 and I paid nothing out of pocket. The insurance was not (and never has been) happy about Tilt Table Tests and always ask for an explanation of why that particular test needs done. Once they understood it is the only way to diagnose POTS, they were okay with it.

I wrote in detail about each test they run in their autonomic clinic as well as my doctor consults. Here is a link: http://lethargicsmiles.wordpress.com/coping-with-illness/mayo-clinic-experience/

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...