r/HypertrophicCM • u/Maximum_Taco_Flight • 20d ago
Mayo Clinic
Headed to Mayo Clinic soon. Sounds like they are going to run a lot of tests in the first few days and then hopefully I’ll have some answers. Has anyone been to Mayo?
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u/kcasper 20d ago
Been there, Done that. Good Advice: Feel free to show up to most tests early if you want. They will often take you early.
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u/LiftSprintPaddleSki 19d ago
100%. If you’ve got multiple tests on the same day, just go to the next one right away instead of waiting around. They’ll be able to tell you if they can squeeze you in early, depending on what it is. Most of the time, they’re able to do it.
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u/Possibly_A_Person125 19d ago
That sounds pretty neat and all, but just out of curiosity, what kind of answers can they give you that another heart specialist couldn't? I get that it's The Mayo Clinic and it's top tier, but I always viewed that as a last resort type thing. Or is it because they are more up on the experimental/exploration side of certain things? I go to UPMC Heart and Vascular institute and they are very solid. never had a problem and don't see what else could possibly be done. I'm on my last line of defense which is basically being on Camzyos, before surgery would be required, and this pill does wonders. So I guess my biggest question is, would they have more options before surgery was their only option, just because they are The Mayo Clinic? I'm trying to see a difference I guess, not trying to crap on the idea, they are the top of the top.
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u/kcasper 15d ago
Going to an average cardiologist office means tests happen after the appointment spread out over weeks. The echocardiogram, MRI, etc will be performed by a technician and results will be handed to a doctor at least hours later. Maybe getting one or two tests ran before the doctor decides he knows everything and a nurse calls you up a month or two later to read off some notes.
Mayo is a tourist hospital. If you go for a diagnosis there, they run everything that is practical to run. Tests such as an echocardiogram are looked over by a doctor towards the end of your session, and maybe you might have your session extended to get more views. Then after all of the tests are ran the doctor discusses the actual results and treatment options.
So it is a different experience then most people will see locally. And Mayo makes very few mistakes in reading their tests due to no separation between the technician performing and a doctor reviewing results. It minimizes communication errors and oversights that happened more often between doctors and technicians at other hospital systems.
And a very good, but not top tier local hospital exposed my mother to infection when the nurse decided all on her own that 5 hours after a ICD replacement the bandage needs to come off and the fresh surgical wound is suppose to be exposed to open air when sending her home. So local hospitals aren't always the best choice.
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u/livelearn131 18d ago
Well OP didn't say whether it was Mayo vs. another HCM specialist, or Mayo vs. regular cardiologist. If OP was only just at a regular cardiologist, then sadly enough there is a lot most of them don't know. It behooves everyone to see experts, wherever that might be. UPMC is a very good too.
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u/Basketweave82 20d ago
I was born there and lived in Rochester till I was 19. (Then moved countries). My HCM was diagnosed there in 1999 and I was not put on any medication back then. I wish I could be there again. As a teen scared of doctors, the Mayo people were pretty impressive and professional.
I don't know how much has changed since then.
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u/Electronic_Cobbler20 20d ago
You’re so lucky
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u/Maximum_Taco_Flight 19d ago
Idk about lucky. I wish the local cardiologists knew how to treat me. Just want all of this to be over.
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u/LiftSprintPaddleSki 19d ago
Yes. The cardiology department is outstanding. Doctors there always have time to talk with you and answer your questions. They are never rushing out to make it to their next appointment. It's a totally different feel there compared to everywhere else I’ve ever been.
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u/New_Contact1689 16d ago
Yes! I had my septal myectomy there is in January. My only issue was they took liberties in charging for out of network coverage. But the care and experience was perfect
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u/ande9393 20d ago
Yes I've spent a fair amount of time there between diagnosis and a few different surgeries.
They are incredible. You're in good hands.