"Getting into Mayo"

[PattiL]

Hi everyone,

I've noticed these posts, recently one from Jenn202. Exactly how do you 'get into Mayo". As I've mentioned before, Chrissy has been having some difficulties lately and Dr. Grubb hasn't gotten back to her reg. Dr. in a couple of weeks. (I've tried calling also). We've seen Dr. Chelimsky (Cleveland) b/f we saw Grubb and even as a follow up appt. for him it'll take 6-9 months. Is Mayo just for additional testing? Is Dr. Low (Mayo Dr., I believe) good about cooresponding with your primary back home?Chrissy's already had two TTT (one at University and one at Cleveland Clinic). Do you have to have a certain degree of the illness to be looked at by a Mayo Dr.? Chrissy can function fairly well on some days, not so on others.

I'd love your opinions on this.

Thanks,

Patti

[Miriam Poorman-Knox]

The most expediant way is to have a referral to Dr.Low from a doc. He also gets your medical records and reviews them. Then they call you with an appt. Since you already have a lot of MD support,I think maybe utilizing them would help. I went to Mayo and was there for 2 weeks, had a good work up, they found lots. I doubt anything Dr. Grubb would have missed. I understand he has a nurse practioner or PA perhaps you could speak with her. It is so frustrating, yet we must keep asking. Miriam

[Jenn202]

Patti - I agree that a referral is the best way.... But I think most important is to be agressive about needing to get in.

I was on a waiting list since last month. I was told that it was a 90 day list, if I was not called by then I was taken off the list and I had to start over....

I called every week... I got the runaround, so I had my husband call..... He spoke with the internal medicine secretary,,,,, pleaded my case that is was highly important and could she do something to help us... 10 minutes later we got the call saying I was in June 1st...

The other thing was that as the secretary looked up my last name she could not find it..she said they had mispelled it and b/c of that I would of probably never been called, but have gone through the cracks...

SO all I can say is keep on them,... It did pay off for me.... How my visit will go is another story!

Take Care.

[nantynannie]

I hope no one thinks this is rude, but why do we go to these places? Do they help us a bunch? Should I think about going to one of these testing facilities? Thanks for any answers.

Ann

[Eillyre]

Hi Patti,

I just returned from a visit to Dr. Low at Mayo last week. Like you I was unsure just how to get in to see him (I found out when we were there that he can only see about 20% of the patients that ask to see him) or any of the other neurologists there.

The way I went about getting in was by:

1) asking for an appointment with Dr. Low

2) having a referral from my cardiologist, but adding some of my own information to what she sent (I wanted to stand out as different from the other hundreds of people sending in bland run-of-the-mill referrals).

3) I wrote a short narrative of my case (what I was doing before I got sick, progression of symptoms, my severe decrease in activity level, what little I can do now). That way he could have a very complete look at how much this illness has disabled me -- my dad's a doctor and says that sort of thing is a doctor's dream because it's much easier to gather initial thoughts about a case when all of the information is put together chronologically.

4) Summary of all my tests (grouped by dept. -- blood work together, cardiology together, radiology together, etc.) and their results & important observations.

5) Copy of the summary report from the electrophysiologist at UPenn that gave my primary diagnosis of POTS and recommendation for further testing at a MAYO or NIH type of research center -- all of his explanations and reasons for diagnosing POTS under the peculiar circumstances were concise but well-documented. This further supported my claim for needing highly specialized testing and consultation with people who see this day in and day out.

All in all, is that what got me into Mayo and Dr. Low in just 4 months? I have no idea -- I think God's plan all along was for me to take that trip out to Rochester, but I know that my additions to the referral only helped; Dr. Low mentioned how "beautifully documented" my information was!

Just one last note regarding Ann's post. Why do we go to these places? DO they really help? I've asked that myself at times when I'm just so tired of tests and talking to more doctors. BUT MAYO WAS TOTALLY WORTH IT! The staff was very friendly and compassionate and listened to everything I had to say -- no one made me feel like I was a bother to them. I was taken very seriously and at all times felt like their sole purpose was to get me better. The testing was performed extremely quickly (only two days for my quota!) and all of the technicians understood about my symptoms (very attentive to trouble standing and sitting up, shower temperature, etc.). The final consultation with Dr. Low was not at all rushed; he answered any and all kinds of questions I had, explained all of the test results, gave me a final diagnosis, described my new treatment plan, and carefully outlined what the future might hold for me (in terms of career, activity level, health over the next year or so, etc.). I was a person to him.

I don't know what your cases look like, and maybe you've already received the best care that you can get, but in my case, the MAYO experience was certainly worth the energy I put into it.

Hope this is of some help!

Angela

[Merrill]

Angela, it's good to hear from you! I'd been wondering how your Mayo experience was and whether you had a successful trip. What's in store for you? Are you starting new medications? Will you be doing pirhouettes any time soon???

Hope you're on the mend,

Merrill

PS whoops--I just saw your other post! Let us know how you're doing on those vitamins etc!

[Guest tearose]

Angela and others do a great job of outlining how to get to Mayo.

I do want to say is was very worth it for me because I learned at Mayo, how to better manage my body and how to maximize my quality of life in spite of my health challenges.

Mayo, MN has some of the best testing equipment in the world! It was worth the expense, the time and energy! They explained to the best of their ability, what is happening in my body and what I can do to treat my situation.

best regards, tearose

[nantynannie]

Hi Guys,

Would anyone mind sharing how much this testing costs? Also, is Arizona Mayo any good? Thanks.

Ann

[Ernie]

Hi,

I know someone who went there for POTS and it costs 30,000$ U.S..

Ernie

[Eillyre]

My 2 days ran about $3,600.

[nantynannie]

Thanks for the info on the cost!

Ann

[PattiL]

Thanks everyone for your replies. Now I just have to check to see whether it's covered by ins. to go there or not! We're seeing a new cardiologist next month, I'll try getting a referral from her. Lots of good information though, thanks. I'll let you know what happens.

Patti

[Kitsakatsa]

My costs from Scottsdale were about $5000. Unfortunately, they stuck me with Cardiology and that was not a huge help. I've been accepted as a patient of Dr. Low's, but I am waiting for a date. When I called my insurance company, they offered some great advice to increase coverage. They said to have the scheduling secretary call on everything that Mayo performs and get a pre-authorization. That way, Mayo will have a harder time balance billing you (difference between accepted and billed charges). Now, the hard part- how can you get secretaries to actually do it?! Also, Dr. Low and the Mayo clinic belong to a network called "Beech Street" that many insurance companies cover in their swing out policies. Hope this helps. I hope that my day comes soon and that I will be able to post a success story as well.