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Anyone been to the Mayo Clinic?

kitykat086kitykat086 member
in Special Needs

In July, DS spent 13 days at the local children's hospital for hypercalcemia (high calcium). After doing all the tests they could think of, the doctors diagnosed him with idiopathic hypercalcemia of childhood, which means they couldn't find an underlying reason for it, and said they hope it goes away in a few years. DH and I are now thinking about seeing if we can get a second opinion, possibly at the Mayo Clinic. We will be discussing this with our pediatrician next week, but I was interested in hearing from people who have personal experience. We are not unhappy with the care we received (and are still receiving) at the children's hospital, but if there is a possibility of figuring out what is causing this, we want to do anything and everything we can.

If you have experience, how did you decide that you wanted a second opinion and how did you decide to go there specifically? Do they review your chart prior to setting up the appointment? How was it before, during, and after your visit? Did they accept your insurance or did you have to pay out of pocket? I'm interested in any and all information if you have it!

TIA.

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Re: Anyone been to the Mayo Clinic?

  • realisticdreamsrealisticdreams member

    Places like that are usually used to being a second opinion so I'm sure when you call it will be very easy to set up.  

    Neither of the girls have been there but I did set up an appt for myself for cardiology before and I just called the main # told them I wanted a second opinion and it was pretty straight forward from there.

    If you have in-state insurance like medicaid or a version of that they may not take it, when we go to KKI in Baltimore even though part of Hopkins' takes medicaid KKI doesn't and neither do the actual doctors so we only use her primary insurance.

    I would just go to your insurance website but chances are Mayo clinic would be covered since it's so large.  

    Some places will want to review the chart before they set up the appt (we've run into that with neurosurgery) but really it just depends on the department protocol.

    GL 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • MirandaHobbesMirandaHobbes member

    I don't have a ton of information for you, but my Dad went there for a heart surgery. There were no surgeons in his area that could do the particular surgery he needed. His insurance covered it (and to be fair- his group plan coverage is typically very very poor). It was run like a very well-oiled machine. They reviewed everything prior and set up several appointments pre-op. He only met the actual surgeon twice, once at a pre-op visit for like 10 minutes, and once a few days after the surgery. My Mom stayed with him a week while he was there; I visited. It was amazing- all the patients on his floor were from around the world. The campus is huge. You get pagers whenever you check in at a counter. Coincidentally, my Dad's surgery was postponed 10 hours because a 15 day old baby with heart condition was brought in for emergency surgery. The parents were from either Arkansas or Alabama, I can't remember.  My Mom stayed with them in the waiting room. They were staying at the Ronald McDonald House. My mom stayed at one of the many cheap motels that surround the campus.

    I have a son with ASD and I thought about bringing him there for an eval, but we've been pretty happy with what we've received so far. If I had a child with a unique medical issue, I wouldn't think twice to go there.

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  • ToastieSimonsToastieSimons member

    I have not been to the facility personally.

    However, I have a rare bone disorder.  When I had a tumor removed they did order a pathology report.  When it came back cancerous they sent all the slides to the Mayo Clinic as a second opinion.  They came back with the same results.

    I think the Mayo Clinic is supposed to be a second opinion.  If everyone ran to these specialized clinics everytime they had a headache then they wouldn't have the time for research and studies of rare disorders.  They'd be treating everyday headaches.  Now, if you go to them after you've been diagnosed with a brain tumor that's causing the headaches, they have the time to devote to researching and learning about your brain tumor to come up with the best plan of action. 

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • ppantsppants member
    I'm a nuclear medicine tech and we do parathyroid scans to rule out a parathyroid adenoma which can cause hypercalcemia. I assume they also ruled this out or maybe doesn't occur in kids IDK? My mom went to Mayo in Rochester, MN about 10 yrs ago for bladder issues she'd been dealing with for quite some time. I went along with her, and the whole operation is pretty slick. All testing, dr review, and fix took place in 4 days. Everyone was very kind and helpful. I would definitely look into it.
    Wendy Twins 1/27/06. DS and DD
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  • kitykat086kitykat086 member

    imagemrs_sexy:
    I'm a nuclear medicine tech and we do parathyroid scans to rule out a parathyroid adenoma which can cause hypercalcemia. I assume they also ruled this out or maybe doesn't occur in kids IDK? My mom went to Mayo in Rochester, MN about 10 yrs ago for bladder issues she'd been dealing with for quite some time. I went along with her, and the whole operation is pretty slick. All testing, dr review, and fix took place in 4 days. Everyone was very kind and helpful. I would definitely look into it.

    Thanks for the reply. His parathyroid was one of the first things they checked in the hospital and all the results on it came back normal. We are still working with the Endocrinologist on some testing -- DS is scheduled for a growth hormone stim test in October, but I think they said this is related to his failure to thrive, not necessarily his high calcium. The Nephrologist has no additional tests to run.

    The Mayo Clinic in Rochester is probably the one we would go to as it's the closest to us.

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  • kyethrakyethra member
    I have been there repeatedly and love it!  When I was 20 I got really sick and after months the local doctor finally figured out it was an ovarian cyst.  It ruptered, but the pain and stomach problems only got worse.  I saw multiple local specialists and even had an exploratory laproscropy and when nothing was discovered I was told the pain was in my head.  I called the department of gynecology and asked for an appointment and they said it was by referal only.  I asked then if they could transfer me to another department, maybe pain since I had been having months of gynecological pain and my last doctor refused a refereal since she said it was in my head.  I was put on hold for a moment and when the person came back on I was scheduled for a couple of weeks out. I went up and saw the doctor and he did an exam and then diagnosed me in ten minutes-- I had an entrapped nerve ending in the abdominal wall.  I was then sent to Gastro where they figured out why I kept having problems.  Then I was sent to the pain clinic where I got a treatment plan and I started physical therapy all within a couple of days.  When my local pain clinic messed up the protocol they got me back on the wait list for Mayo and fixed me.  And after my insurance covered what it did I filled out the financial forms and got most of my bill waived.  It was wonderful.  I found some other treatments that worked as well and eventually found a local doctor that knew what he was doing in terms of the pain treatment and so forth, but I wouldn't hesitate to go to Mayo again if there was anything odd or complex and I needed more opinions. 
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