Mayo Clinic

[ken870]

this is kenand i was wondering if anybody has been to the mayo clinic in minnesota i went back to my neuroligst yesterday because i had got worse and she told me that i needed to go to the mayo clinic and see doctor low so how do you o about getting a refferal and is it a good place to go to get treatment.

[Maisie87]

this is kenand i was wondering if anybody has been to the mayo clinic in minnesota i went back to my neuroligst yesterday because i had got worse and she told me that i needed to go to the mayo clinic and see doctor low so how do you o about getting a refferal and is it a good place to go to get treatment.

Yes I just got back from MAYO in Minnesota. They are wonderful and very thorough. The doctors and nurses will spend more time with you than you are used to spending with doctors. The Mayo docs don't miss a thing, they don't skip steps or tests. If anyone has the answers it's them.

Good luck, I hope you can go and get some peace of mind. That's half the battle right. .?

Maisie87

[janiedelite]

Hi Ken,

On the Mayo Clinic website, there's a page you can access in order to apply to be a patient there. You and your doctor need to fill this out, and your doctor needs to include all the dysautonomic symptoms you have and he needs to stress the severity of your symptoms. Have this application sent specifically to the autonomic neurology department. You can request to only see Dr. Low, but it might take longer to get an appointment with him. I've also heard that those people who saw Dr. Low only saw him for a very brief visit and saw one of the other doctors for the majority of the visit. I saw Dr. Fealey and he was very patient and thorough about investigating all my symptoms. I've also heard good things about Dr. Sandroni.

Here is a link to the patient referral page, including the fax numbers and application your local doctor would need to fill out:

http://www.mayoclinic.org/medicalprofs-rst/

Have your doctor send in the request asap, as it can take several months before an appointment is available. Good luck!

[Jen2533]

Hi Ken,

The Mayo will take appointment requests from anyone but the quickest way to get in is with a referral from your doctor. Since your doctor brought it up he/she should be familiar with getting the paperwork together. I would recommend following up with them in a couple days to make sure the ball started rolling. In the meantime, get all of your medical records together...any test results, sickness you have suffered, surgeries, family history, primary complaints, etc. I have a binder with tabs, each tab represents a body part and the corresponding test results go into each section, after those sections are a section on my full medical history, a section on illnessess in my family tree, and anything else that may be relevant. I numbered the pages and put a table of contents on the first page so the doctors could easily find everything and any test that had abnormal results I typed in italics in the table of contents. This makes everything go much smoother and the doctors will LOVE, LOVE, LOVE you for it. It will also allow you to avoid replicating tests (which costs more money) and should allow you to finish sooner than if they had to wade through everything on their own. I hope this helps and the best of luck to you, you will be in good hands at Mayo.

jen

[Guest tearose]

Mayo Clinic, MN gave me back my life and dignity. Go there knowing you will be put through some real tough testing but have many answers from many brilliant and compassionate doctors there.

If your local primary doctor requests your appointment, it will take about a month for an appointment. From what I hear, here, if a patient calls out there it takes about three months to get an appointment.

Keep your hope up.

best regards,

tearose

[lmt033167]

I have United Healthcare which is a great ins and I have a great plan, I pay $3,000 out of pocket for my family a year and the rest is 100% covered.

I tried Mayo clinic; but it's is on my out of network benefits and would cost $12,000 extra just to go to them each year, which I can't do

[Guest tearose]

You don't go there every year!!!

I understand the stress of out of pocket costs. However, your life is most important and if you only go once for the original complete, thorough diagnosis you will NEVER regret it. They have several specialized tests (only three top ANS testing centers in the world) and the best doctors in the world. I gave up a lot of material things and asked family to help me afford the trip. I think you overestimate the expense a bit but even if it is 12K you can ask Mayo for a payment plan...and again, I ask you...aren't you worth it?

I do understand the depth of the financial ache and wish it weren't this way for us. These are some of the tough choices we non-affluent folks with medical challenges have to make.

tearose

[lmt033167]

When I went to my pcp and he told me he suspected valve damage, I got with my insurance co and Mayo Clinic here in JX FL.

I was told they are out of network and the cost would be $12,000, which I would have to pay up front. Right now, all of my care; testing & prescriptions are paid 100% in network; since I paid my $3,000 deductible in my first month of testing & treatment.

It's not feasible for us to pay out of network in my situation at the moment; even if it would help me get back to "normal" whatever my normal may be now

[janiedelite]

When I went to my pcp and he told me he suspected valve damage, I got with my insurance co and Mayo Clinic here in JX FL.

I was told they are out of network and the cost would be $12,000.

It's not feasible for us to pay out of network in my situation at the moment; even if it would help me get back to "normal" whatever my normal may be now

Totally understandable. Just please don't give up on trying to get to the Rochester, MN Mayo autonomic clinic. Save up what you can. My mom and her best friend did a fundraiser at the hospital where we all used to work because just the travel from Oregon to Minnesota mostly cleared out our savings at the time. I'm not "normal" even though I'm implementing all of their advice. I can't even work still. But I don't feel like I'm dying every day. And I finally received the proper testing and diagnosis. For us, it was worth it.

[potsgirl]

Another good doctor in the autonomic specialty area is Dr. Brent Goodman. You may not have as long of a wait with him because he recently transferred from AZ to MN. He's wonderful, and still returns my calls if I have a question, and I saw him last March. Be prepared to spend a week or more there...There are a couple of good hotels that connect by underground tunnel to the two main buildings of the clinic. I also had to pay upfront before my procedures since they didn't take my insurance. About 5K at first, and then about 4K later. For some odd reason, my insurance company did end up paying for all but about 1K of it. No doubt it's an expensive trip, but well worth it.

Dress warm if you go in the winter/spring months!

cheers,

Jana

[erikainorlando]

So...is Mayo better than Vanderbilt? And for those of you who have gone, what have they done...what has seemd to work? I think I may be a little better but simply because I have learned more of how to live with this illness.

Thanks,

Erika

[Radha]

mayo may be a great place to get a diagnosis, but did they change your treatment so that you actually felt better and saw improvement in any way? did they prescribe any medicine that your local doctor hadnt given you?

Radha

[Guest tearose]

Mayo had the unique tests to properly diagnose. The local doctors and centers have no access to these tests! Also knowing how to interpret the results is a skill Mayo has.

(In a simple way I explain it this way...If you have a test that tries to discover whether the patient is "red or yellow" then that is all you are looking for. What if the patient has a condition that is "purple or green"? You do not even see it because your test is not the right one.)

As far as treatment plans...Locally, no one had actually understood how to properly treat or the range of treatment plans or the dangerous side effects of meds with concurrent issues. If I had listened to the second set of local Electrophysical Cardiologists, I would have had a pacer and a defilibrator by now! I hate to think what my kidneys would be like by now!

Once I was diagnosed, Mayo worked on a proper treatment plan for and with me. It has helped me get my life back.

I am so appreciative to all those who helped me get there. It cost a lot and insurance was inadequate. I still know it was one of the best decisions and one of love for myself and wanting to not be a burden on my family that drew me there.

tearose

[potsgirl]

I think that Mayo Clinic is definitely worth the time and money if you've gone to several doctors and not one seems to know what particular tests are needed to diagnose one properly and to give a good treatment plan. If you've got POTS/dysautonomia and you're unhappy with your treatment, or are not seeing improvement, or you have a particularly sticky case, I believe it's worth the time and money to go to Mayo, or Cleveland Clinic, or Vanderbilt. I can't say who's best, because I've only been to Mayo. It would be interesting to go see Dr. Grubb, too, and see what the differences would be!

Cheers,

Jana

[potsgirl]

Hey Erika~

I'm guessing they're all good places to go....Of course most of us have only been to one major clinic (Mayo, Vanderbilt, Cleveland C) so it's hard to do a comparison. That would be great to know, though!

cheers,

Jana

[erikainorlando]

Jana -

Do you think Vandwerbilt is as good at identifying underlying conditions? My doc recommends Mayo but my ins will pay for Vanderbilt...and everyone is strapped financially right now ..

Thanks..Erika

[potsgirl]

Hi Erika!

I just don't know what to tell you because I'm unfamiliar with Vanderbilt. I would guess they're both about the same. You might want to ask others who have been to Vanderbilt what their experiences are. I know I was very impressed with Mayo, and am going back to the one in AZ for some new heart issues in December. I think you would get good care either place. I wish you tons o' luck, E!

Cheers,

Jana

[Poohbear]

Well....this is just based on my personal experience.

I have been to Mayo in Jacksonville, FL twice; Mayo in Rochester, MN twice and Vanderbilt too many times to count.

Mayo clinic is good for ruling out rare potential root causes but for the majority of folks the root cause is still never found even with the extensive testing.

All-in-all I have gotten better care from Vanderbilt when it comes to autonomic issues.

With all of that being said, none of these centers have 'magic answers'. There are numerous medical journal articles out there that go over what meds and behavior modifications are used. Your local physician should be able to read up and educate themselves a bit and try you on those meds. If they don't work then none of the other centers are going to have any new meds to try either.

If you can't get local physicians to help then you may have to go to one of these centers.

FYI---Univ. Mississippi Medical center in Jackson, MS is gearing up to open an Autonomic Lab and the Dr. heading it up knows what he is doing. So for any folks in the deep south that may be another option. If you want more info PM me.

[erik]

Since Vandy does so much research perhaps there is possibility of squeaking in as a research subject and saving some dough??? I have not been through that process and don't know how many folks they take on, but some of the studies essentially include an extensive work-up in them. Anybody know if the Vandy researchers even blend research with treatment... or do they just take their measurements and keep results private (from a research volunteer)?

[Poohbear]

Anybody know if the Vandy researchers even blend research with treatment... or do they just take their measurements and keep results private (from a research volunteer)?

Yes, they take the results of the data they get from the patient and aim to provide a treatment plan based on those results. There is some information they keep to themselves (like some of the genetic testing stuff) but postural studies, medication trials etc. you are given info at the end of your stay (or you can request the records) that shows what medications you were given on which days and it also shows your heart rate, bp results for each of those studies. It will list your baseline and then various intervals throughout the 4 or 5 hour daily medication trial.

[potsgirl]

How many days is one typically there for testing?

Thanks,

J

[Poohbear]

How many days is one typically there for testing?

If you are referring to Vanderbilt it will depend....if you go outpatient then it's a 1 to 2 day thing and you will get billed for all testing, consults, labs etc. If you go the inpatient research program it's 10 days but you have no expenses (other than the expense to get there) and you will get more insight into what medications and treatment options might work for you.

You will still have to have referral and it still takes a while to get an appointment.

[ken870]

this is for everybody that has seen doctor low in minnesotas mayo clinic do you go into the hospital for tests or does he do his testing in the clinic also what motels are good to stay at while you are there i heard th kahler motel is good.p.s. does anybody know how much the testing cost and is there a place like a hospitatily house to stay at.