Re: Mayo, Rochester - W

[Guest guest]

Heidi,

I went to Mayo in Rochester, MN the end of June. I first saw Dr. Chari and his

resident, Dr. Lara. It was Dr. Lara that I was positively disgusted with. He

was a resident, but the second time he saw me was his very last day at Mayo as a

resident and he was leaving to move to Texas to be a full-fledged GI doc! I saw

him first on Monday and then again on Wednesday. On Wed, he basically told me

there was nothing wrong with me except that I was using too much pain medicine

and I just needed to go through the Mayo Clinic's 3 week pain rehab program.

The thing he didn't know was that I had already met with one of the pain

clinic's psychiatrist the previous afternoon! They had not initially been able

to schedule an appt for me in the pain clinic during the week I planned to be at

Mayo, but I had gone to the pain clinic and sat around for 2 hours waiting for

them to work me in. The pain doc was a great guy. Their program centers around

behavior mod and techiques for dealing with uncontrolled pain. Most of their

patients are dealing with back pain. The pain doc told me that he didn't

recommend me doing there program at this time, but that if I ever got to the

point that I didn't feel like the pain medicine was effective for me that I

might want to consider their program. He told me that with cp, it was

unreasonable to think that a patient could totally control their pain without

the help of narcotics. He said it sounded like I had a good pain doc and good

plan at home so he felt I should continue with what we had been doing for the

last year.

Back to the GI, Dr. Lara - he was totally convinced I just had a drug problem

and as we know once they decide that, they do not see or hear anything else. He

told me that I don't have lupus because I have no rash on my face. I wasn't

even there because of lupus. It was my rheumatologist that referred me to Mayo,

so he was treading on her territory. I absolutely DO have the butterfly rash on

my face, even though 40% of people with lupus NEVER have it. I even had a

biopsy where they took two chunks of skin from my face to determine if the rash

was caused by lupus and the biopsy came back that the rash was consistent with

lupus. I had told Dr. Lara that the rash comes and goes and that if he kept me

under the florescent lights and I took off my make-up, the rash on my face would

be very obvious. I was diagnosed with lupus in 1996 and for the most part we

have kept it under control with the medication, plaquenil. Anyway, again back

to Dr. Lara - he told me that he didn't think I'd ever really even had an attack

of acute panc - never mind the times both my lipase and amylase were more than 5

times the normal limit. He told me other things could cause your amylase and

lipase to be that elevated but when I asked him what, he became very evasive and

didnt' answer. He also told me that he didn't think I had liver disease and

that my liver enzymes had never been very elevated. I asked him if he didn't

think liver enzymes in the high 700 range was considered 'very elevated'.

Normal is less than 30 for one liver enzyme and less than 36 for the other. He

told me my liver enzymes were never elevated that high. I assured him they

absolutely had been that high on MANY occasions. He told me it wasn't in the

labs I had given him. I immediately told him he must not have bothered to look

at the labs I had given him and I found page after page of labs with my liver

enzymes ranging from 500 to almost 800. He then began stuttering and became

very aggitated. He told me that he really thought I needed to stay there longer

and see someone in their pain clinic and do their pain rehab program. He didn't

know I had already seen a pain shrink the day before! When I told him I'd

already talked to the pain shrink and he didn't recommend me enrolling in their

program at this time, he tried telling me that he knew I had not seen anyone in

their pain clinic. when I produced the shrink's name and then business card, he

stuttered even more. He finally ended the visit with saying " Well, we can't

really prove that you don't have cp, but we can't prove you do have it either. "

Oh, he had also refused to set me up an appt in their rheumatology dept, which

my rheumy wanted. She wanted to see if Mayo's rheumy's thought my cp was

related to/or caused by my many autoimmune diseases.

By the time I left the appt with Dr. Lara on Wed, I was fuming! I was so pissed

that I spent my precious time, energy, and money to bother coming to the Mayo

clinic. It was too late that day for me to call the rheumy, but I called her

office first thing the next day. I got a call on my cell phone only an hour

later asking me to come back to the GI clinic and see a different GI. It was a

totally different, and very pleasant experience then. I saw Dr. Mark Topazian.

He immediately told me that lupus was not his specialty, but he did know that

you could have lupus and never have a rash on your face. He told me it was

obvious I'd had numerous attacks of acute panc. He said he couldn't absolutely

say it had progressed to cp, but he certainly could not rule that out. He also

said I had obviously had many incidents of 'seriously' elevated liver enzymes

and he would leave it up to their hepatologist to say whether or not I really

had autoimmune hepatitis. Their pathologist read the same liver biopsy slides

read by the path in B'ham and the hepatologist at Vanderbilt in Nashville. They

both agreed I have AIH with stage 3 fibrosis - 4 is cirrhosis. The mayo path

said she saw no signs of AIH and all the damage she saw in my liver was

consistent with the kind of damage repeat attacks of panc would cause. Now,

mind you, Dr. Lara had this report from their path when he insisted I'd never

even had an attack of acute panc!

Dr. Topazian told me he thought I should have another ERCP. I told him I

wouldn't agree to that unless my GI/hep, Dr. Goetsch, at home said I should. He

called Dr. Goetsch right then and Dr. Goetsch convinced me to let them try an

ERCP, even though the 3 that had been attempted by my old GI, Dr. Sigman, after

I'd had the gastric bypass, had not been successful. Because my intestines have

been re-routed, the tubes are not long enough to do a complete ERCP. Anyway, I

agreed to let them try. HORRIBLE MISTAKE! The Mayo ERCP guru tried the ERCP

with a pediatric colonoscope because it is longer, however, it is a little

bigger around so it caused more throat and stomach pain. I was awake during

almost the entire, very long, procedure, despite being given 400 mg of demerol,

according to the report. I was screaming at the top of my lungs - the best you

can with a tube down your throat. I tried my best the whole time to jerk the

tube out but I had two nurses holding down my hands. It was absolutely the most

horrible experience of my life. I could feel the tube moving around in my

stomach and I've never had anything so awful. Of course, all the screaming and

fighting meant that the tube damaged my throat more than normal. The next day,

I kept feeling like something was stuck in my throat. I looked and the uvula

(thing that hangs down in the back of your throat) and it was literally so

swollen that it was sitting on my tongue! My throat has never hurt so much!

They really couldn't get far enough to determine anything from the ERCP.

So, I really didn't find out anything new from the Mayo clinic and it was a

tremendously stressful event. I flew there by myself because I didn't want to

spend the money for two plane tickets. Honestly, everyone except that IDIOT,

Dr. Lara, was incredibly kind.

My rheumy was appalled when I told her that I felt Dr. Lara just had his mind

made up that there was nothing wrong with me and I just wanted drugs. She said,

but I sent them a tremendous amount of information on your case. You have

evidence of your labs being elevated to the level of serious danger. How could

any doctor possibly totally disregard all of that information that is in black

and white? I told her I didn't know, but that he had not been the first doctor

to treat me that way. I told her that once a doctor makes up his mind that you

only want drugs and that nothing is really wrong with you, there is nothing

anyone, not even another doctor, can say to change their minds. She told me she

was sorry I was treated that way but that she was glad that I didn't put up with

it and that I had let her know. She said, whether or not you have lupus and

many more autoimmune diseases was never even in question and it's certainly not

something a gastroenterologist should determine anyway!

In defense of Mayo Clinic, I think that I have so many different things going on

that often doctors cannot see the forest for the trees. My medical history can

be rather overwhelming and it takes a special doctor to be willing to take the

pieces apart and really try to get to the bottom of what's going on with my

crazy body! However, after my trip to Mayo, I had many people tell me how they

had been totally disappointed in their visit to Mayo. My sister-in-law told me

she had known many people who had gone to Mayo and had the doctors end up being

totally off track and even just blatantly wrong.

The lesson in all of this is that sometimes it may be better to just leave well

enough, alone, as you can often go to 10 different doctors and end up with 10

different opinions and then things just get more confusing than they already

were.

However, I don't necessarily think going to Mayo was 100% wrong. My rheumy's

heart was certainly in the right place by sending me there. She really worries

about me contracting some sort of really dangerous infection one of the times

when I'm in the hospital, so she very much wants to keep me out of the hospital.

Because I have lupus AND an IgG deficiency, I am at a much higher risk of

getting some really ugly infection and not being able to fight it off like a

'normal' person could.

So, now, are you sorry you asked about my visit to Mayo?

W

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