Mayo Experiences

[jen201041]

I have POTS and am supposed to go to the Mayo Clinic in Minnesota this winter. I'm curious who has been to Mayo before and how their experiences went. Did you use the POTS clinic part of it or something else? I am also curious because I am mainly going to see if any doctor can figure out the underlying cause of my POTS (my current doctors are not interested in testing for any possible causes of it). Should I go to the POTS clinic part of it or should I just see a general doctor there? Anyways, I'd love to hear your stories about Mayo!

[bean418]

My compression stocking rx was for waist high!  Took a small army to put them on.

Mine has been 4 years this June....more tests in that time period than my whole family in their lifetime...scary.

I found a DO (doctor of osteopathic) that said one thing is causing all problems....took the attention of an endo and ent.

Just came in on your post today....so not sure of all his symptoms.

Is your husband B12 deficient.  Have they checked it since he has history of GI issues?

[mtgardner]

I can have both very high and very low BP.  THey tested my catecholamines at Mayo Arizona and found I was having episodes of high norepinephrine.
I don't seem to have the ability to adjust buffer BP. I  also have very low at times.  It can be very complicated when you have low and high.  I do have auotonomic dysfunction but as a caution no two patients are alike.  There can be subtle things that make a difference in your husband's case and the ability to look at everything and sort it all out.  Mine was complicated by several other problems that were potentially life threatening for me,  I am now on a regimen of medications that help me a great deal. I also have a neuro-muscular disorder we are still working on.  I can't speak to how much they have helped me there.  I was referred to an endo when needed and to and ENT to fix a problem that was cutting off my air at night.

dfvyvb is right on about the pace. The clinic is storied and there are elevagtors but it is exhausting. Ask for a wheelchair for your husband and it will be easier.  There is a low cost wonderful restaurant inside.  I was on a budget on my visits so I opted to go off season and stayed at a place that was within two miles and has van service.  That saved a car rental. I flew in and have some advice on that as well as shuttle service...Message me if you need more information.  I feel Mayo Arizona has saved my life on at least three fronts.  No local neurologists feel up to handling my autonomic dysfunction so traveling for this was insturmental in getting diagnosed and on a tx plan that works for me.

[beyonddespair]

Please tell me more about your condo rental?
Also, how long were you there?
I found a great website for condo / vacation rentals but can't tell which are near the clinic.  
Thanks so much, Nancy

[beyonddespair]

Sadly, none of the MD's he's seen in 7 years prescribed ANYTHING! NOTHING. They run expensive and extensive tests, say they are inconclusive then say I don't know.  

The surgeon who removed 12 inches of colon for diverticulitis 7 years ago had rx'd Ondansetron(Zofran)  to help with the nausea. It appears his blood pressure goes too high, not too low, but we still think it is a vaso vagal issue that might be triggering POT"S like symptoms even if it's not 'really POTS'.

I actually bought him some light compression socks the other day and he likes them.  They are more for sports or hiking, so I suspect the compression is not as tight. I hope it's ok, because he just bought 6 more pair.  
And now he says his calves have been feeling funny.  

[beyonddespair]

I would LOVE to Connect.  And thank you!

[beyonddespair]

I would LOVE to Connect.  And thank you!

[bean418]

Hello!

I was wondering if the person that recommended the tilt table study rx anything for your spouse after the results of the test.

Reasoning....I took a tilt table test 2 years ago and it was inconclusive however my symptoms "suggested" orthostatic hypotension.  Recommendation was 2 litres of water per day, LOTS of salt.  That's it.

Went back to Cardiologist (referring dr. for study) he said you can try compression stockings if you would like.  Hmmmm....not feeling confident in "if you would like".  Went to primary and he said don't do compression stockings yet it can cause more harm than good....but I don't know whats wrong with you.  SMH

I do not pass out but do have terrible symptoms of dizziness, lightheadedness, palpitations (even when lying down), bending over is problematic and according to others I turn pale when an episode occurs.  Have had more 3 echos, 3 nuclear stress tests, ridiculous amounts of ekgs that are NEVER normal, 3 SEVERE episodes of all the above symptoms with visual disturbances, tunnel vision, sweating buckets, worsening weakness (my bilateral upper and lower weakness is 24/7) and then fall asleep...however, I am thinking that it is passing out and not sleeping.

I decided to refer myself to an electrophysiologist (EP) and he talked to me for 10 minutes did the bp in 3 positions and said I am putting you on florinef (fludrocortisone) and baffled as why someone has not put you on this med much sooner.  Hmmmm.....we will see what result comes from this medicine.  

Has your spouse taken this medication and what other choices have you been given to treat the symptoms.

I must add that apparently I have low lying cerebellar tonsils (they are not calling it Chiari but that's another story)

It truly is the most horrid feeling to have these symptoms.  My endocrinologist and ENT both recommended an EP but since the referring Cardiologist told me that an EP did the tilt table study I didn't need one makes me curious if this is correct or not.  Again, that was 2 years ago and when I just had another episode that landed me in the hospital for 3 days the cardiology consult didn't have much to say (the cardiology PA thought pacemaker) and the outside cardiologist that I saw wants to repeat the tilt table study....not finding much confidence in him though.

I just hope this EP is correct.

[mtgardner]

Nancy,  I would like to fill you in on this but maybe it is easier if you message me and we can do it that way.  Actually I will message you first to set up the connection.  I don't mind at all sharing my experience with you. I have been there now six times and twice for surgeries.  I do believe experience is highly dependent on the individual  doctors available to you at any one of the three sites. Arizona was very approachable to me when I was undiagnosed and Rochester for me was not.  

[beyonddespair]

I am taking my spouse to the Mayo in Arizona for what we think is POTS -- but have no official diagnosis.  The tilt table test was pushing th elimits of normal, and inconclusive. We can't find a diagnosis yet.
What can we expect from the Mayo in Scottsdale?

Nancy Lamb

[Martha6163]

Can you share the name of the docs in FL Mayo.  We too live in FL, Pensacola actually but can never get in to see Dr. Thompson.  have been trying for 8 months and he always cancels plus he doesn't take most insurances.  I'm scheduled at mayo in april but would like to know more.  Thanks

[Rocko230]

So glad I read your reply I have apt. in a couple of weeks now I am confused. So they don't have any autonomic testing in Jacksonville? Thank you so much

[mtgardner]

I saw Dr. Goodman in August and October of this past year and the two years previous.  I do not have POTS but I do have autonomic dysfunction and he ordered tests that were helpful in several different diagnoses.  I would recommend going for five days if possible, getting your intake appointment on a Monday and your exit on a Friday so they have time to do the testing needed.  You can always talk to someone in neurology if you can't stay that long.  They actually wanted me to stay for three weeks the first time but I had to opt to go one week and come back later for more testing.

I usually go in the summer as rates are lower at hotels and some have vans that  take you to Mayo Clinics so you don't have to rent a car.  I arranged transport to the hotel through a shuttle service and stayed at the La Quinta in Scottsdale.  They are very good with Mayo patients and have a hospital rate as do some other motels in the area as well.

I do not think I would be alive right now if I had not gone and had several different problems diagnosed and fixed.  I can't speak highly enough of Dr. Goodman.

I will say when I first was approaching a place for help I sent an inquiry to Mayo Rochester and received a form letter rejecting me as a patient.  I felt so disheartened and wondered at the time how many other patients got such a letter and did not pursue help. Then I asked my primary to actually make a referral...this time to Mayo Arizona and this particular doctor and I was accepted as a patient.  I felt so much relief at that.  I am not sure if having a physician make the referral was the difference as it was a different Mayo also....Arizona not Rochester....or wether it was the fact it was Arizona Mayo, or the fact it was this doctor.

I just hope Jen you get the help you need!  Marie

[dfvyvb]

I got dx at the Mayo clinic. I am also a Dr. Goodman patient. I wish I had gone sooner. I was worried about travel, who would take care of my kids, costs, so I put the visit off. When I finally went the cost was SO low, one week of tests was cheaper then one visit to my local ER.

My tips are expect to be exhausted by the non-stop tests and appointments but try hard to do every test when you are there. I opted for a wheelchair which I had never been in before but I need it since tests start at 7am and go till late afternoon. Most of the doctors offices have couches in them, so I laid down during my visits (embaressing but helpful).
The 2 most helpful tests were the tilt table with QSart and vasvular testing and the NE standing tests. The Qsart part confirmed my autonomic dysfunction and the NE test showed my POTS was H-POTS.
I also recommend that you see PT while you are there. I was very glad I had an appointment and got a plan from PT. then when I got home to my local doctors that have no clue about POTS, I took the PT plan and they helped me get going on it.
I also am glad I got a very nice condo to stay in. I was lucky going to the Arizona location off season to pay very little for a 3 room condo. This way my poor husband could relax if I needed to sleep and I could make meals as needed. It was a tiring week and some tests make you fast, some make you drink fluids, it was just nice to have a kitchen.

I have been to Mass general and many other teaching hospitals when I was younger for another medical issue. Mayo clinic by far has the most professional care and wants to get to the bottom of things at the lowest cost to you.

[Sweetearth1161]

I don't know about the mayo clinics out side of Fl but all I got out of two visits was sky miles, I am female 52 first dr would not believe me or my mom that also has Sychope that I pass out, insomnia, fibromyalgia , chronic migraines, horrid acid reflux plus more he said drink coffee and diagnosed me with erectile dysfunction.
A month later I returned to another dr there all he said was yea you have pots and Dysautonomia but nothing he could do. Next am I passed out in hotel , heart rate was 172 his nurse said get in er I did tons of x rays blood work they messed up telling me I needed a transfusion ASAP before I died. Well got admitted assigned a first month DA resident three more blood pulls blood was normal. They kept promising they were gonna figure things out. Noon next day I was wheeled to outside to wait for a ride alone.
  Been trying to get in Dr Randy Thomas in Pensacola or Vanderbilt but wait list is 7-9 months. I am willing to go anywhere in the US .
  Ty Susan if anyone knows my e mail is ***@****

[mtgardner]

I have been to Mayo Arizona one time to see Dr. Goodman and am scheduled to go back next month.  I have only good things to say about the clinic in general and Dr. Goodman in particular.  My experience was very positive.

If you want to reply privately for more detailed information please feel free to do so.  Marie

[Kor1212]

Jen, I too have a doc that is not committed to finding a cause for my dysautonomia.  I am getting a 2nd opinion at the Mayo Clinic in Arizona.  Has anyone had experience or work up here? With DrGoodman?

[Dina723]

Hi Jen,

I was at Mayo Clinic last winter. At the time I was seen in a different dept. because my POTS had not been diagnosed yet. I didn't have a good experience there. But like I said I was in a different dept . I do know of several people who have been there for their pots though and may be able to share information with you. They were seen by cardiologists and neurologists. If you send me a pm I will share more with you if you are interested. Best of luck to you.

[herbalfrog]

Was diagnosed for POTS with dysautonomia in November by neurologist at Mayo. Was placed on fludrocortisone, Folic Acid and Vitamin B6, while following gluten free diet and started rehab for 6-8 weeks (3x weekly) for reconditioning and strengthening of veins, muscles and bones. I am so grateful to have a diagnosis and hope to find some relief soon from the pain in my legs and generalized neuropathy, but hope that those horrible flushes and sweats with tachycardia attacks will subside. Besides that, I have a tumor on my adrenal gland and have an appoinment this coming week at Mayo with a nephrologist t determine possible pheochromocytoma. Hope to be able to get back with more info at a later date.