I'm at Mayo and need your opinions

ajonesy
0 Recommendations

This is an e-mail I sent to Judy, but if any of you can help I would appreciate it. Also if you have been to Rochester, please let me know what doc you saw.

Judy,
You are just the person I wanted to hear from. We are here at Mayo. I saw my doctor yesterday and he ordered tests through Tuesday July 1st. I saw Dr. Szarka. Did you see him? If not who did you see? I can't decide if I like him or not. How long was your initial consult. I talked to him for about 30 minutes, but I am not sure I got anywhere. He was nice, but I couldn't tell if he was going to be able to help. Let me tell you the tests he ordered and if you would or can remember could you tell me what your doctor ordered for you and could you tell me anything about the tests I am going to have.

He ordered a urine test, and blood tests.
I had a four hour gastric empty study (actually it was six because I called in the middle and asked him to add on the small bowel)
He also ordered a Autonomic Nerve test
Also a Swallow evaluation
and a esphagus x-ray

Does this sound about what your doc ordered for you?

I guess I just was looking forward to being amazed and encouraged by my doc and I got neither. Maybe I am being too hard on him. Maybe after all of the tests I will like him better. Do you think if I don't like what he has to say on Tuesday that I should ask for another doc? The little he did say was that maybe I had a problem before my Nissen surgery and I didn't know it. I am so sure that is not the case. He also acted as though he wanted to try me on a different med. I think it is called Remron. I guess it is an anti-depressent that is supposed to help with nausea and increase appetite. That is all well and good, but still putting the food in my stomach hurts too bad. When I asked why I would want to put food in my stomach if it doesn't empty he said "well it will eventually come out" I don't think that is the answer I want to hear. Anyway, if you have time to get back to me I would appreciate it. I would also appreciate it if anyone else is reading this and has any ideas to let me know.

Thanks,
Amy

4 replies

Novagrad
  • By Novagrad
  • Posted June 26, 2008 at 11:57 am

I was at the Mayo one year ago. I saw Dr. Darlene Kelly and then Dr. Joseph Murray. I also saw a neurologist for the autonomic neuropathy testing. I had two weeks worth of testing between the two departments. I had a motility test where they put you to sleep and do an endoscopy then they lower the tube further and wake you up. You lie around with the tube in your throat and then they feed you and watch the motility. I also had a 48 hour gastric emptying, tons of blood and urine testing, autonomic testing (tilt table, sweat test, urine retention test). I basically had testing every day that I was there. There were more GI tests but I can't think of them now. I met with nutritionists too who evaluated my tube feeds (I have a j-tube). The doctors were very informative. Oh, I also had allergy testing and found out I was allergic to corn products (which is in everything). Good luck with the testing!

Mimi

kdrouet
  • By kdrouet
  • Posted June 26, 2008 at 10:41 pm

I went to Rochester in 2003 and saw Dr. Young-Fadok, but since then she moved to the Mayo Clinic in Arizona. I am not sure that we had the same symptoms, however, because it didn't hurt me to put food in my stomach and I was never nauseated ... I just couldn't pass any food without a ridiculous amount of laxitives. They tested me a trillion times and figured out (finally) that my entire colon was nerve-damaged ... dead tissue and wouldn't move anything, so they removed it. She did the straight hook-up surgery where they were able to connect the end of my small intestine to my rectum and it saved my life. I am about 70% recovered - would be 100% if my small intestine wasn't diseased as well, but unfortunately, it is. Hope that helps!

mphotographer

Hello everyone-
It sounds like people get some results (and lots of testing) done at the Mayo Clinics. Do you all think it's worth while going to Mayo Clinic if your doctors are stumped? I don't have the severe nausea or vomiting, but I eat pureed foods and continue to lose weight, getting that awful, deep, dull digestion pain after eating (sometimes it's 1/2 hour later, sometimes 2 hours later). I just wondered if it's worth going to Mayo, getting the same tests done with no other real treatment options. I'd appreciate more discussion on this topic from others of you that have gone to the clinics. Thanks so much!! mphotographer

chewy1
  • By chewy1
  • Posted June 29, 2008 at 2:24 pm

mphotographer,
I usually sound like a cheerleader when it comes to Mayo. I first went in 2001. It was a very good experience and yes, I had tons of tests but when I left I felt a sense of relief that I hadn't before because I had been checked head to toe and the "hidden' worry that something was being missed was eased.
I went again in Dec. 2007, I again had several tests which actually was good because the GI doctor there was able to look at my results from the first time to then and compare. It showed that my symptoms had progressed and that many new ones had developed. I then went back in Jan. for 2 weeks for pelvic floor retraining therapy. I also returned in late May/early June for tests related to GERD.
Anyway, I really felt that despite the fact airfare and staying in a hotel isn't cheap, it was worth going just for the sense of knowing that things have been checked thoroughly and if anyone will know the latest treatment options it will most likely be Mayo.
Judy

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