HCM specialist?

Posted by rondar @rondar, Mon, Nov 25 7:15am

Hello! I had a myectomy and aortic valve replacement at Mayo. I have HCM. I have a wonderful cardiologist in the cardiac valvular clinic but would like to consult with a HCM specialist. Is this unreasonable. Do all the cardiologists work together? I don’t want to insult my valvular Dr. I have children and grandchildren and genetic testing has not been addressed.

You need to get a referral from your Dr. But Dr Barry Marron at the Mnpls Heart institute is the founder and father of this condition. He is world renound and has done the Mayo teaching. Look him up on Yahoo. He is the number 1 Dr in the world and close . He may or may not see you. He highly believes in the Mayo Clinic Cardiact Abilities. Good luck.

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Thank you.

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Dr Barry Maron is not in Minneapolis any longer. He moved to Boston and is affilated with the HCM Center at Tufts. There are several excellent HCM specialists at Mayo and elsewhere. HCM is not a common disease in that most cardiologists do not see a lot of patients with this disease. Therefore, if you can get to a specialist you should. You can contact the HCM Association in NJ for a list of certified HCM centers of excellence. 4hcm.org . good luck

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@mosaic

Dr Barry Maron is not in Minneapolis any longer. He moved to Boston and is affilated with the HCM Center at Tufts. There are several excellent HCM specialists at Mayo and elsewhere. HCM is not a common disease in that most cardiologists do not see a lot of patients with this disease. Therefore, if you can get to a specialist you should. You can contact the HCM Association in NJ for a list of certified HCM centers of excellence. 4hcm.org . good luck

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Thank you for your response.

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@rondar

Thank you for your response.

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I did not know Dr Marron was no longer in Mnpls.i saw him once ,was very fortunate. He said he believed that I would live a normal life as I was 65 already. He said he had respect for Mayo Clinic in Rochester Mn had the best equipment in the Country and he would go there if he needed cardiac care. There are 1 in 500 people born with this disease, but unfortunately they are not a ware of this. This hereditary disease is more noted every year thanks to Dr Marron.

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@lvon

I did not know Dr Marron was no longer in Mnpls.i saw him once ,was very fortunate. He said he believed that I would live a normal life as I was 65 already. He said he had respect for Mayo Clinic in Rochester Mn had the best equipment in the Country and he would go there if he needed cardiac care. There are 1 in 500 people born with this disease, but unfortunately they are not a ware of this. This hereditary disease is more noted every year thanks to Dr Marron.

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Totally understand, I had to convince a couple of cardiologists that I saw Dr Barry Maron at Tufts and not his son, Dr Marty Maron, who heads up the HCM clinic at Tufts. They kept insisting he was in MN! I finally told them I wasn't crazy and that I actually met both father and son!!

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Hi @rondar,

You are absolutely correct about wanting to consult an expert on HCM – Connect’s alumni mentor @cynaburst has always recommended the same.

Mayo Clinic has a long-standing hypertrophic cardiomyopathy program that provides highly individualized care. Specialists in the Hypertrophic Cardiomyopathy Clinic at Mayo Clinic diagnose and treat people who have HCM. Care is provided by cardiologists, surgeons, specialized medical assistants, nurses and genetic counselors with specialized training and expertise in HCM. https://www.mayoclinic.org/departments-centers/hypertrophic-cardiomyopathy-clinic/overview/ovc-20442502

You can read more testimonials from Connect members @badmac @sarah_e @sheim @dp52350 @knecht in these discussions:
https://connect.mayoclinic.org/discussion/freaking-out-a-bit/,
https://connect.mayoclinic.org/discussion/surgery-on-jan-30th/

I’d also encourage you to read, "Notes from presentation by Dr. Joe Dearani re: Myectomy at HCM Summit” https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/

@rondar, may I ask if you would share what's concerning you, at present, about the HCM diagnosis?

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Everyone at Mayo is great. Your valvular Dr. would not be insulted I'm quite sure and if so, it doesn't matter. What matters is taking control of your own health issues. Get the answers you need.

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@kanaazpereira

Hi @rondar,

You are absolutely correct about wanting to consult an expert on HCM – Connect’s alumni mentor @cynaburst has always recommended the same.

Mayo Clinic has a long-standing hypertrophic cardiomyopathy program that provides highly individualized care. Specialists in the Hypertrophic Cardiomyopathy Clinic at Mayo Clinic diagnose and treat people who have HCM. Care is provided by cardiologists, surgeons, specialized medical assistants, nurses and genetic counselors with specialized training and expertise in HCM. https://www.mayoclinic.org/departments-centers/hypertrophic-cardiomyopathy-clinic/overview/ovc-20442502

You can read more testimonials from Connect members @badmac @sarah_e @sheim @dp52350 @knecht in these discussions:
https://connect.mayoclinic.org/discussion/freaking-out-a-bit/,
https://connect.mayoclinic.org/discussion/surgery-on-jan-30th/

I’d also encourage you to read, "Notes from presentation by Dr. Joe Dearani re: Myectomy at HCM Summit” https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/

@rondar, may I ask if you would share what's concerning you, at present, about the HCM diagnosis?

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I am concerned how my diagnosis may affect my kids and grandchildren. I want to ask about genetic testing for them.
My valvular Cardiologist did not tell me I have HCM until I asked. I had an aortic valve replacement and a myectomy. When I was researching myectomy I found this is was for patients with HOCM. So I asked him if I had this and he said yes. We have never addressed the subject again.

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@rondar

I am concerned how my diagnosis may affect my kids and grandchildren. I want to ask about genetic testing for them.
My valvular Cardiologist did not tell me I have HCM until I asked. I had an aortic valve replacement and a myectomy. When I was researching myectomy I found this is was for patients with HOCM. So I asked him if I had this and he said yes. We have never addressed the subject again.

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Rondar I am truly sorry that your doctor was not upfront with you. My husband was diagnosed with mitral valve problems at the age of 43, 41 years who) but a year later the diagnosis changed to HCM. October 4 2018 he had septal myectomy at Mayo Rochester after being severely compromised to the point of fainting. He is as normal as normal can be Doing amazingly well still has HCM but it’s no longer obstructive. he takes 50 mgms a day of atenolol We talked to the cardiologist about genetic testing for our son to which the cardiologist recommended having an echo every 5 years so his first echo was normal he will be monitored for the rest of his life.
I hope this helps. Keeping as fit as you can with diet and exercise really helps recovery after surgery if that’s what you need. Best wishes to you and Happy Thanksgiving 🦃

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@rrowner2

Rondar I am truly sorry that your doctor was not upfront with you. My husband was diagnosed with mitral valve problems at the age of 43, 41 years who) but a year later the diagnosis changed to HCM. October 4 2018 he had septal myectomy at Mayo Rochester after being severely compromised to the point of fainting. He is as normal as normal can be Doing amazingly well still has HCM but it’s no longer obstructive. he takes 50 mgms a day of atenolol We talked to the cardiologist about genetic testing for our son to which the cardiologist recommended having an echo every 5 years so his first echo was normal he will be monitored for the rest of his life.
I hope this helps. Keeping as fit as you can with diet and exercise really helps recovery after surgery if that’s what you need. Best wishes to you and Happy Thanksgiving 🦃

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Thank you for taking time to respond. Have a wonderful Thanksgiving.

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