Is it possible to get a virtual (tele) second opinion on HCM at Mayo?

@leenag
Virtual appointments/2nd opinions are available but limited by federal and state guidance. For example, one of my providers is licensed only to see patients in MN. I live in MN so that I can do virtual appointments with her.

You mentioned you did a self-referal; was that for Mayo or a clinic in Texas?

If you want to start the process for Mayo, you can self-refer or have your provider request a referral at: https://mayocl.in/1mtmR63

When submitting your request, let them know that you are interested in a 2nd opinion via a virtual appointment.

I am glad you found a local support group. Have they been helpful?

I used that link and self referred which connected me to Cardiology at the Mayo. They require a local docs like my primary care to refer me to them. What I am not sure is am I connecting with the correct team. Do they not have a dedicated HCM team…….is that connected to Cardiology? Also she said my appt has to be in person …….which does not work well right now as I am dealing with Afib and cannot travel.

@leenag

It is frustrating to try to get the care you need, either because of location or because of a specialist's availability.

Let me see if I can answer a few of your questions.
1. If can actually visit a Mayo location, as part of appointment process, they determine the correct provider to see based on your requirements.
2. If you cannot travel, you can see if there is a clinic in your area that is part of Mayo Clinic Care Network. The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist. These hospitals have full access to Mayo Clinic’s knowledge and expertise. This spares patients the expense and inconvenience of additional appointments and unnecessary travel. There appears to be only one in Texas. https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
3. Another option is to see if there are University or specialty clinic in your area.
4. Also, Mayo has launched a new tool this year to help find top providers in certain specialties. Not sure if your specialty is listed, but they will be adding new search items in the future. https://www.healthlocator.org/

@leenag ,
I don't know any of your circumstances and all of us are different, but is your cardiologist a specialist in HCM? It is recommended to see a cardiolgist at a Center of Excellence with a HCM clinic with a high volume of HCM patients. Check out the Hypertrophic Cardiomyopathy website to find a center closest to you. I did check and there are three in Texas.
Also, I know how difficult it is to deal with symptomatic Afib. I was in Afib constantly for six months until the right medication was found. Though difficult at times, I exercised and traveled to Mayo Clinic several times without issue. Like I said, I don't know your situation, but travel while in Afib is possible for most. My heart rate would go up as high as 175 and was above 100 most of the time for the six months it was constant. It is very scary. Have you seen an electrophysiologist for your Afib? If you could find a way to travel to Mayo Clinic, it would be well worth it. I believe there is a Mayo Center of Excellence in Arizona as that would be closer for you. I wish you good luck on this journey.

I tried this with Cleveland Clinic and they wont do it, in order to treat or see me, I have to go there (March 20) and get all of the tests again there, on there machines with their equipment. I understand that, its a lot as it is 5 hours away, I have testing stating at 7:30am and have 10 tests and appointments that day, but that's how they do it, better then multiple 5 hour drives. Im going to go on March 19th, stay in a hotel connected to the center, test all day on the march 20th, spend the night again and drive home the next day. Just going to bite the bullet, I also dont think there are any cardiologists here that specialize in this and we def need specialists at a COE

@leenag as soon as I called the Cleveland clinic and started telling her what was going on, she said, oh, let me transfer you over to our HOCM center, they have a whole building and team for this specific condition.

@leenag, yes Mayo Clinic has a dedicated hypertrophic cardiomyopathy team. Allow me to introduce you to some patients who have been to Mayo Clinic like @karukgirl @johnwx @walkinggirl @emo44 @mbi @brumasterj @oliviasoma who can share their experiences.

Mayo Clinic welcomes both new and existing patients for virtual and in-person care in adherence with federal and state executive orders and guidance. Virtual care is available for out-of-state patients IF the provider you are seeing is licensed in the state where you live.

Video and phone visits can be great options for appointments before, after or in place of face-to-face care. Appointment coordinators will recommend a virtual visit if it best fits your individual needs.

@leenag, was your local doctor able to submit a referral for you? Which Mayo Clinic location do you wish to go to? Arizona or Minnesota?

Hello Colleen

My primary was going to send in a referral but this was at Cardiology and not directly HCM. I need to call HCM dept directly in Rochester. I will do that this week. Really appreciate your guidance. Thank you .

@leenag, cardiology is the right place for your doctor to have submitted the referral. It will be triaged to HCM experts for review.

You can read more about HCM care at Mayo Clinic here: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208

Glad you found this site! Its frustrating for sure so many people here went under diagnosed or misdiagnosed for years before going to a COE
I went online to phoenix mayo and filled out the form, the very next day the cardiology team called and wanted me to head that way! They had me gather my medical records from the local hospital and bring them with me! They saw me within 5 days of the call and diagnosed me the day they ran me thru several appointments!
I was diagnosed with severe HOCM and they felt for my young age of 57 and my active lifestyle surgery was best!
They got me on camzyos to get my stronger and sent me to Rochester Minnesota for Septal Myectomy!
Now with that being said yes expect to travel but on the other hand i know Texas has some great COE in houston and dallas so do your home work and I know you will be lead to the right place:)
Respectfully
Jack