Re: Mayo Bound

[Guest guest]

Suzi,

It's great news that you were able to get an appointment at the Mayo Clinic on

such short notice! I felt that way about my appointment at the Mayo Clinic in

ville, but actually my GI doctor was friends with the Pancreatologist

there, (they are both Mayo graduates), and he paved the way for me by

discussing my case with him when they were both at a medical convention

earlier in the year. I just hope you get the same kind of treatment and have

the same kind of success at the clinic in sdale as I had at Jax.

Truthfully, if I were you, I'd allow more time than 4 days for them to do all

their

testing, but you'll just have to wait and see. We were only there 2 days, but

could have easily stayed 3, they wanted me to actually stay 5, but my

husband had to get back to work. And my case was much more cut and dried

than your's may be. I was just there for him to look at the pseudocysts and

determine what the best course of action would be about them.

In spite of my taking hundreds of pages of records, and all 16 of my CT-scan

films, MRI films and MRCP films, too much stuff for me to even carry alone,

they did have me repeat tests. I had to do a pletheoria of new bloodwork and

a new CT-scan. I don't know what all they will need to be looking at for you,

but I would predict that they will require you to repeat any tests or radiology

exams that would be pertinent to your case.

My experience at the clinic in ville was absolutely wonderful. They

were so professional, considerate and patient oriented that it was a very

positive experience. I've heard different reactions from people who went to

the clinic in Rochester, so I really hope that the sdale facility is as

well

run and the doctors as caring and knowledgeable as the ones I met in Florida.

Please update us when you get back!

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina Rep.

SE Regional Rep., PAI

Note: All comment or advice is based on personal experience or opinion, and

should not be substituted for consultation with a medical professional.

[Guest guest]

Hi,

Firstly, Do they know how far you are coming from? because usually

for patients travelling from another state, they can organize to

have everything done one after the other so you are not there for

very long.

Secondly, you could always travel with Angel Flight. They are a

network of pilots who donate their time, planes & fuel to take

medical patients to their appointments for free. They are excellent

to use. I used them last year when I had to go to Houston for a

second opinion on my tumours, and I mentioned them to Chrissy who

used them earlier this year when she had to first see her surgeon

about her TP/ICT.

Thirdly, if Angel Flight is no longer an option as you have paid for

your tickets and can't get a refund, I would suggest that you take

out travel insurance. This would guard you against having to

postpone or cancel your flight for medical reasons. If you purchase

it from Travel Guard within 10 days of booking your airfare, they

will waive the existing condition policy. So, if you need to cancel

or change your flight dates, you will not have to pay the penalty

that the airlines charge, or at the least will have to pay it and

then get reimbursed.

I think the site is www.travelguard.com

I had to take all my medical scans & xrays with me, but because it

was tumours we were looking at, no invasive testing was necessary.

But if it had been for something else, then yes, they would have

wanted to see for themselves, and I would have let them. Only

because I believe that if going for another opinion to see if

something else could help, they might pick up on something that the

other doctor/s have missed, or something could have changed between

then and now. Perhaps that is why they have given you a wide time

frame, incase you need hospitalization after an ERCP.

But that is just my opinion. Unless it is very life threatening, I

would let them retest me however they want to try and find a cure or

fix to what I need.

[Guest guest]

I went to the one in Rodchester, Minnesota, back in 1999. I took all

my films from all my tests, and Yes they repeated everything. Repeat

ct-scans poor quality was their rationale.

Also had to have an endoscopic secretin test.

I got there on Saturday, and was suppose to leave on Friday, but

didn't get to see the Dr. for all the test results until Friday, I

ended up going home on Saturday.

This was not a good experience for me, I found them to be arrogant,

I have already had my congential defects visualized during an open

surgery it was right there. Plus also diagnosed at IU Med center,

still not good enough. They wanted to discuss the fact that I was

divorced twice. This had nothing to do with anything. I let them

know it too, what does the fact that my first husband was a cheater

and I left him for it and my 2nd husband was a bum, wouldn't work

wouldn't do anything but sit in a chair, have to do with anything.

Maybe I have poor taste in men, but it still didn't change the fact

that I HAD 2congential defects of the pancreas and SOD.

I have heard of people going to other Mayo hospitals and finding

alot of information. I for one think the one in Rodchester is not

worth the expense (I spent $125.00) a night for a trashy hotel with

a microwave and small college type refrigerator. Down the street was

a small grocery store I paid $5.00 for a gallon of milk in 1999 and

$7.00 for a box of cheerios.

I will pray that you have a better experience then I did. You know

thinking about it that was the last time I ever saw a GI Dr. I have

had my fill of them.

Atwell LPN