Has Anyone Seen Dr. Cheshire At Mayo Clinic?

[potsyturvy]

I am supposed to go see Dr. Cheshire in October. It is about a 20 hour drive for me to go see him, so I wanted to get other people's opinions about him before I make that much of a time and money commitment. I already have a POTS and IST diagnosis, but am currently looking for underlying causes because I have a bunch of diagnoses some of which go with POTS, but some don't really seem connected (plus some odd thyroid tests and other weird test results). I am just wondering how other people's experiences with him have gone and if he is the right person to see to look for an underlying cause or if my time would be better spent seeing someone else. Thanks!!

[maggie]

I was dx by Dr. Chesire for pots and he never did any testing for underlying causes for my pots. I didn't have a very good experience with him, but maybe it would be different for you. He stated he would explain any issues I would have with pots and that never came about. Also he doesn't treat he only dx. I don't know if that helps you or not, but I think I would look for someone else, only my opinion.

Maggie

[potsyturvy]

Thanks for your reply Maggie! I'm sorry your experience wasn't good! I'm nervous about going to him, because I have read some bad reviews, but I don't know where else to go! Do you have any suggestions of better doctors to go to? Did you see any other doctors when you were at Mayo? I was thinking maybe if he was my primary doctor while I was there, he could still refer me to other doctors there, but I don't know if it would really work that way. I still don't totally understand how Mayo works lol

[maggie]

Mayo will not give you a primary doctor I do not believe. I first went there with the dx of inapporiate sinus tachycardia. I saw an electrophisologist first and he ruled out that dx. Dr. Cheshire is the only doctor at Mayo in Jacksonville that works with pots . If you need a doctor in another area they assign the one they think is best. The doctors all work together which is very nice. By the time you get to your next appointment all the tests results are already at the next doctor's visit. I have a classmate who works for Mayo and I talked to him regarding Dr. Cheshire, he agreed that his bedside manner could be improved on, but he was the only one at Mayo. The other issue with Mayo is that you pay upfront and wait to receive your money back from your insurance company. It cost us over $10,000.00 to get my results from Mayo in three weeks. I didn't know this at the time and it was a good thing we had a high limit on our credit card or else they wouldn't have seen me until we had worked out the money issue. I don't think that policy has changed, but I would check on it before you decide to go. Sorry I don't have better answers for you, it's a difficult decision to make, especially because you don't know what then end cost will be.

Maggie

[kclynn]

We didn't have to pay anything up front. They accepted our insurance (and it was a high deductible plan) I just got done paying them off from our visits in the winter.

We saw a main Dr. (pediatric neurologist). She decided who to send us to, then we followed up with her.

We were seen at Rochester so maybe other locations do it differently. If you have these concerns call them to get your answers and also if you think of something else, I would call them again. I talked to the appt. person who was super nice a number of times.

[momdi]

Mayo asks for cash up front if they do not take your insurance. It's easy to find out if they do. Just give them a call. Believe me, they know their financial issues.

Mayo does have primary care docs, but I think they're only used for "local" patients. If you're coming in for a work up, you'll see the scheduled doc, and he will refer to other Mayo specialties if he deems appropriate.

In our many experiences in Phx, the docs do not communicate well. However, their computers communicate well:) All the information is immediately in the computer for any Mayo doc (or you, through medical records) to access. Three people in my family have used Mayo for various situations, including primary care, cancer treatment, and POTS. We've had experiences with 3 primary docs and been unhappy with all of them. We ultimately gave up on using Mayo for primary care and get that outside the Mayo system. We use Mayo now only for the POTS doc.

Remember that any follow up after your visit is mediocre to non existent.

OTOH, some people love being in the enclosure of the whole Mayo system.

Hoping you will find the direction that you are looking for.

[worththewords]

If you are going to go to Mayo Clinic Jacksonville I would highly recommend seeing Dr. Fred Kusomoto instead.

[Godsgal]

I did see him in February. I would like to add that you should see him in addition to Kusomoto or Vankat (they are both EP docs in cardiology). cheschire is the head of neurology. Do not expect him to have a magic cure for you. Do expect a man that will thoroughly review your records and do a ton of neurological testing for rare antibodies that a normal doc can't and wouldn't test you for. If you go there, see as many specialists as possible and make the appointments in advance so you don't have to go standby when you get there.

[teecee28]

I saw Dr. Chesire in Aug of He did not impress me. I was referred to every doc in the world and ended up down there for 5 days to get all the testing and procedures done. The only doc that offered help was the cardiologist. They gave me an excersise program. This other doctor sent me to physical therapy because Dr Chesire felt I was deconditioned. That doc(DR. McIntosh did not agree about the deconditioning, but sent me anyway. The Gastro doc gave me a new med for nausea. Dr Chesire never followed up with me, I had to make an appt to see him and he didn't say anything. I spent 13,000 dollars and left without anything different. By the way, he doesn't like it when patients come in with a diagnosis of POTS from somewhere else. I had been diagnosed in 2004. The reason I went was because I had to stop work as a respiratory therapist in May 2010. I was trying to get back to work. My BP would drop so low I would pass out and still do. If you go they are nice, but don't look for a miracle as I did. Good luck to you.

[issie]

A word of caution - if you see a specific doctor in neurology - you are their patient whenever you need to go back. If you don't like that doctor, it is an act of congress to get permission to see another doctor in that department. So, if you have any reservations - follow your gut insticts. (I learned the hard way.) I do however - Loooooovvvvvveee - the new neurologist I finally got into see at Mayo in Phoenix - Dr. Goodman. He is a very kind, patient and listening doctor. He runs the basic test and didn't offer to do the additional rule out type of test -but because I had educated myself and knew what I wanted ruled out/ I was able to see an Internest who became my main piviotal doctor and she ordered all the test I wanted done. They don't mind making the money - if you don't mind having to pay your part for the test. The bill is enormous - but I do have good insurance. I'm still having the "Mayo experience" going on 4 weeks now. So, whenever I get things more firmed up - I'll let people know the results. It is quite the business - Mayo. It is a well oiled machine of a place. But, don't think it's cheap - IT IS NOT. This is my 3rd trip through this establishment and this time it has been to rule out possibilities - I'm about to get the root cause of it all. THANKS to persistance. It takes time and not getting overwhelmed by it all. Take each doctor at a time and gather your thoughts for that doctor before you go in and then you will be able to focus on what you need to say and get from that visit. It pays to educate yourself as best you can on how a particular body part plays a role in this (i.e. kidneys, liver, blood pressure, veins, renin - aldesterone axis, tumors, EDS, Mast cell etc.). Hope it goes well for you.

Issie