ANA Discussion Forum
General Category => AN Issues => Topic started by: carriekartman on November 24, 2023, 02:59:23 pm
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I am recently diagnosed, (1.2 cm and living with meaningful impacts, so not a "watch and wait" situation). I'm reaching out for "2nd opinions," most likely for SRS. I contacted Mayo, as they seem so well regarded. Does anyone have information on the quality of service at one of their sites, vs the others? Arizona would be closest for me, but at this initial consultation stage, I want the best medical advice possible, and I'll worry about travel issues if it comes to that.
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If you're closer to Arizona than Mayo, and are wanting/willing to travel, the the house institute in LA or the team at Stanford, I think, seem the be the gold standard. You can search these forums and find these places, but for those who are going to travel, I think that's probably the way to do. They do free consultations by mail, I believe.
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I live in MN, Mayo is an hour and a half one way for me in good weather. When I was first diagnosed, (and knowing NOTHING about what the tumor was) I was told I had to go to the U of MN hospital. I discovered the ANA and especially the forum, and decided to get a second opinion.
I was very impressed with Mayo - especially one of the physicians - Dr. Michael Link. I started with gamma knife. My tumor was aggressive so they went with maximum safe levels of radiation. It stopped growth in one direction but unfortunately not the whole thing. So this January Dr. Link and Dr. Neff successfully removed the tumor.
I cannot tell you about other Mayo locations. I would highly encourage you to get second and possibly 3rd opinions. Go with where your gut tells you. You need to be confident in your care team - you will be with them for a long time!!
Greece Lover is correct, House and Stanford are HIGHLY rated. Consulting one or both may be in your best interests. Search the forum for others experiences too. A few folks outlined how/where they and family stayed when they received treatment. My family rented an AirBNB 3 br 1 1/2 ba house a block and a half away from the hospital. No driving, the ability to cook and take breaks from the hospital. It was great for them!
Also there are videos of various physicians as resources thru ANA. That gives you some insight as to their personality too.
Wishing you every success on your journey!!
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Thank you! I should be hearing from House Clinic tomorrow (sent them my records already), have an appt at UCSF next week, already met with a Kaiser team, and Mayo and/or Stanford will be next opinions if I feel I need more than three.
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You've got it covered! Well done.
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I have only had experience with the Mayo Clinic at Minnesota, and they were amazing! I can't speak about the Mayo Clinic in Arizona or Florida. But the specialists I consulted with at Mayo were the ones who wrote research articles in the New England Journal of Medicine on Acoustic Neuromas. They are experts in their field, and I highly respect their judgment.
Best wishes on your journey!
Don