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09/10/2010 03:12 PM

Mayo Clinic Advice

chaddwell
 
Posts: 14
New Member

Hi,

Can anyone tell me about the Mayo Clinic experience? I am working with some doctors here but if they can't help me I thought I'd look into this. I went to the website and saw there are hotels but it cost almost $1,000 for 5 days! How does anyone afford to travel to this place for evaluation? I am in Pennsylvania and would probably choose the FL location.

What I'm looking for is the experience from someone who has actually traveled to a Mayo Clinic, preferably FL, what was it like? Did you get answers that you could not get anywhere else? How long is the wait to get an appointment? Does insurance cover lodging costs? Are the doctors nice? How long is a typical trip? Will the doctors try to schedule everything during your stay if they know you aren't local? Is there certain criteria to be met in order to get an appt?

My fear is going all that way and having them look at me like I'm crazy and not be able to help or send me to a psychiatrist. I've already had that happen before. I went to see a new family doctor to assist me and she wouldn't even look at my pile of records, examine me, or take a family history. Just that I needed to see someone. I went home and cried after that appt.

Thanks for the help!

Shannon

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09/10/2010 08:09 PM
Delta
Delta  
Posts: 188
Member

Shannon,

I can speak on my experience with Mayo Hospital in Phoenix where I was just a patient 16 days ago. Praising them for admitting me from severe hypertension 188/118, but 3 weeks prior was at another ER who also admitted me and did dx me with AI. Back to ER X3 same place and no changes to meds and/or any further tests. So my point is Mayo did further testing, MRI, Echocardiogram, CXR

labs, ect. The biggest find was I was SAI and d/c florinef and since *touch wood* have not been back to ER. I am newly dx. as of 27. July 2010. Mayo even adjusted my HC and I am doing much better.

I would recommend them as the specialists are all discussing their findings and all agree on what dx. is and tx. I had the admitting Dr., the Endo, Cardio, and Neurologist come into my room with their "consensus" and continued treatment. I have been in ER before for pneumonia, corneal abrasion, tachycardia but never admitted until 16d ago. They had me in & out in 36h. Yes they are expensive and do not take many insurance carriers. So on my part is "self pay" (only if your an admit to Hospital) All insurance is accepted at the ER. I had all my answers by what I feel are quite elite Physicians and advanced in the study of Addison's/Adrenal Insufficiency. They reviewed my medical records from previous well-respected hospital, yet felt there were some tests still needing to be done, hence the admitt. To my great delight, I feel I had the best treatment & care.

I know there are a plethora of intelligent Physicians out there, however with this insidious disease it is a relief to have not one but several of the Doctors all on same page. And no they won't tell you its in your head.

Best of luck to you if you go to Mayo or find a great Endo where you live.

The hotels around the Phoenix location do have discount rates for yourself and family I have heard, unsure if insurance covers? Many of your questions I gather could be better answered by visiting Mayo's website.

Hope you find some answers and feeling well....................


09/12/2010 12:10 AM
crz49
crz49  
Posts: 1141
Senior Member

I wasn't impressed with my Mayo Clinic experience. I was told I was hysterical and needed to "talk to someone". They gave me the names of "reputable" psychiatrists in my area.

I found going to the University of Wisconsin hospital's medical center to be perfect for me. They do much research...it's not just a teaching hospital, and are aware of the non-typical diseases, such as ours, and can handle it.

Before jumping into your car, check out your state's (or a neighboring state) university hospital online. You may be surprised what you will find.

My best of luck to you.


09/12/2010 07:06 AM
chaddwell
 
Posts: 14
New Member

Wow guys! Such two different opinions. I live near Philly and there are a few hospitals in the city. I did not know if they would do the same team approach that Mayo is known for. Although, a doctor I saw recently said she was going to ask her colleagues who I can see down there because she wasn't able to offer me advice as to what is going on. This is a last resort though. I am seeing another endo who seems to be on the lookout for more rare things and not the typical thyroid testing which I've had done so many times I can't count. I am waiting for blood work to come back and I'm anxious to find out if any of these rare things show up. I'd be shocked.

I've already had one doctor send me to a head doctor and I do not want to travel hundreds of miles to be told that again. Especially since you can clearly see a physical difference in my appearance in photos. I've learned to carry before and after photos with me now because the doctor can actually see the change, e.g the change in my face and swelling in my eyes.

Thanks for your insight!

Shannon


09/12/2010 08:31 PM
kgo
kgo  
Posts: 603
Member

I have not experienced the team approach on Endo, Just Hem/Onc.

I LOVE the MAYO! The level of professionlism is unmatched. i have had my daughter to 3 major childrens hospitals in MN. Once we arrived at Mayo, they figured her all out!

I highly recommend.

My daughters Endo found her brain cancer after she had been misdiagnosed for a year.

Now she is pan-hypopituitarism. I come to the AI group b/c it is so active and it is a major part of her issues. I have met some really great people here.


09/12/2010 08:33 PM
lorajoy
lorajoy  
Posts: 338
Member

Have you ever thought of looking into the NIH in Maryland? We found lots of answers regarding my son's AI there. They pay for everything usually. It was a great experience for us.

Lora-Joy


09/13/2010 06:36 AM
teri72193
teri72193  
Posts: 1264
Senior Member

I went to the Mayo Clinic and found a very reasonable hotel that had transportation to the clinic. I was very impressed with them, however they did not find my Addison's. I was disappointed in that. I also have some friends who live in Apple Valley, MN about 45 minutes away and that was helpful. But the hotel I stayed at was not luxurious, but very clean and had laundry facilities in basement and a refrigerator and right by a convenience store where I could buy food. I am so sorry I can't remember the name of it, but I do know there are very reasonable rates at some of them.
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