Appointments and tests we don't think are necessary?

Posted by vanessab @vanessab, Sat, Mar 9 10:54am

My husband has been ill for 10+ years now and is still undiagnosed. Well he has 2 diagnosis but even with treatment for those he is still sick and getting worse so we believe there is still an underlying issue yet to be found. His symptoms started as GI only but now more recently affect several different body systems (and really they may be completely separate issues not related at all!) and he has had tons of testing already and most being very recently. We have taken the plunge and got an appointment however I am concerned because most of the appointments booked so far look to be heart related and only one GI related way far out (we are on the wait lists for the GI to move it closer).
So my first question would be can I call whoever is deciding the appointments and ask to not have any heart related appointments? His heart has been checked extensively out here in Canada and appears to be fine. It looks like his bradycardia is simply a side effect of his hypothyroidism. We do not have unlimited funds and our main reason for wanting to visit Mayo is his unrelenting abdominal pain. In the write up for why we wanted to visit mayo we mentioned all the other symptoms including the slow heart beat in case they are related but it is really just the GI pain that we need figured out.
My second question is: I also see on the list of appointments several we just had done in December (EKG and 24 hour holter monitor). I did already ask about those and mentioned they were just recently done and we will be bringing the paperwork regarding those with us and the lady (who is very kind and helpful I may add) said if the Internal Medicine Doctor does not think those are needed they may be cancelled and it is easier to cancel them than to add them in later. My concern is they are on the first day we arrive so are they really going to cancel those so short notice? Again this has to do with my first question above I suppose and us not really being concerned about heart problems.
Third and final question (for now!): We had some testing done recently from Germany for infectious diseases and a couple things came up. None of that was sent to Mayo as we only just did it. We feel that it may warrant an appointment with an Infectious Disease Doctor. Should I mention that to the person booking the appointments? I would hate to get out there and then not even be able to get an appointment where we need. I'm not sure which specialties are the hardest to book into.
I'm worried I wasn't clear in what we were hoping to accomplish.
I am probably over thinking the whole thing…

Hi @vanessab it's great that you are double-checking all your appointments and making sure that your visit to Mayo will be as beneficial as possible.

I wanted to introduce you to fellow Connect members @dawn_giacabazi @gailb and @hopeful33250 who all have experience with Mayo and may be able to help guide you through your questions.

Back to you @vanessab who was it you talked to about the heart tests? Is that someone in that department or someone in patient services?

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@ethanmcconkey

Hi @vanessab it's great that you are double-checking all your appointments and making sure that your visit to Mayo will be as beneficial as possible.

I wanted to introduce you to fellow Connect members @dawn_giacabazi @gailb and @hopeful33250 who all have experience with Mayo and may be able to help guide you through your questions.

Back to you @vanessab who was it you talked to about the heart tests? Is that someone in that department or someone in patient services?

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Well I just see there is a stress test appt EKG, a 24 hr holter monitor as well as a heart consult on the schedule we received so I called the appointment office and mentioned him already having just done those recently.

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@vanessab

Well I just see there is a stress test appt EKG, a 24 hr holter monitor as well as a heart consult on the schedule we received so I called the appointment office and mentioned him already having just done those recently.

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@vanessab, I am not a professional, but I have learned that things like labs, blood pressure, heart rhythms and other tests are a moment in time. And by having repeated images over a period of time, there is more data to notice patterns and changes over time.
My experience as a patient at Mayo, is that if there is ever need for more tests to be added or cancelled, that they will do it, and will make ammendments to your appoints during your visit.

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@rosemarya

@vanessab, I am not a professional, but I have learned that things like labs, blood pressure, heart rhythms and other tests are a moment in time. And by having repeated images over a period of time, there is more data to notice patterns and changes over time.
My experience as a patient at Mayo, is that if there is ever need for more tests to be added or cancelled, that they will do it, and will make ammendments to your appoints during your visit.

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I think you are completely right Rosemary. I spoke to the appointment office again today who are just so incredibly helpful and I am not too worried about it anymore. I think if anyone will get to the bottom of this health mystery it will be Mayo clinic.

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@vanessab, a couple of things I was thinking while reading your post. Be prepared with outside records. Bring everything you can with you to avoid additional testing. A lot of times we will see patients that say "our facility at home was supposed to send records" and they were never sent- the best thing you can do is carry them in your hands to the clinic. If you are prepared with outside records and the testing that has been done has the information the physician is looking for, they will use those results. Another thing you can do upon arrival is visit the "Checker desk" on the lobby level of the Gonda Building- there they work on rescheduling or moving appointments up for patients that travel from afar.

Come back and let us know how your visit was-

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@jamienolson

@vanessab, a couple of things I was thinking while reading your post. Be prepared with outside records. Bring everything you can with you to avoid additional testing. A lot of times we will see patients that say "our facility at home was supposed to send records" and they were never sent- the best thing you can do is carry them in your hands to the clinic. If you are prepared with outside records and the testing that has been done has the information the physician is looking for, they will use those results. Another thing you can do upon arrival is visit the "Checker desk" on the lobby level of the Gonda Building- there they work on rescheduling or moving appointments up for patients that travel from afar.

Come back and let us know how your visit was-

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Yes thank you we are very prepared with all the CD's of imaging and a binder full of health records. Thank you, we are so excited!

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I can only repeat what an ER Dr said when I asked about a test, "You have bee to Mayo, they do everything, and the results were negative. This Dr was at University hospital Madison Wisconsin, NOT a 2nd rated medical facility at all. I just returned from Mayo last night, I was scheduled to be in surgery this AM, but one of the team didn't agree with doing it without stopping my blood thinner first, I am not happy, but understand. They very much use the team method up there and put your heath first. Their LIVING motto is "The needs of the patient come first before anything else." You will be in great hands.

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