HCM specialist?

Posted by rondar @rondar, Nov 25, 2019

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.

REPLY

Thank you.

REPLY

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

REPLY
@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

Jump to this post

Thank you for your response.

REPLY
@rondar

Thank you for your response.

Jump to this post

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.

REPLY
@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.

Jump to this post

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!!

REPLY

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?

REPLY

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.

REPLY
@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?

Jump to this post

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.

REPLY
@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.

Jump to this post

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 🦃

REPLY
@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 🦃

Jump to this post

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

REPLY
@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?

Jump to this post

I had a myectomy at Tufts and they have a great team. I had my surgery done by Dr. Rastegar he did a great job and he has done the most myectomies than any surgeon. They treated me great their team is fantastic and so is that hospital yesterday was a year i had my surgery > 🙂

REPLY

Congrats on your success! And your picture should be on a billboard, beautiful.

REPLY
@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 🦃

Jump to this post

You mentioned your husband was severely compromised before having the surgery, septum myectomy? What kinds of foods in particular did your husband eat to stay fit and healthy? Post surgery does he have relief of his symptoms?

REPLY

We had always had a really healthy diet veggies fish you know the usual stuff We are not big beef eaters and exercise. The decline in my husbands health was pretty dramatic ( he had been diagnosed at 43 and had surgery40 years later) we had been hiking in Rwanda to see the gorillas in sept 2017 a pacemaker/ defibrillator implanted 3 months later. We live at 4500ft so exercise became really difficult with several episodes of syncope So was not allowed to walk alone. He was truely compromised prior to surgery but he did really well post surgery , out of hospital on the 4th day and flew home to California 2 days later. His recovery was amazing which I think was because he didn’t have co morbid conditions. His diet was the same and he continued a glass of wine every day 😊🍷
I don’t think he realized how compromised he was until after the surgery.
My thoughts are with you, take care this is the BEST support group you will meet anywhere.
Take care

REPLY
Please login or register to post a reply.