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maysa
@maysa

Posts: 5
Joined: Jan 08, 2017

Just Diagnosed with HCM

Posted by @maysa, Jan 8, 2017

Hello all,

I’m in New Mexico but have family in Arizona. How does the Mayo compare for the treatment of HCM between Arizona and Minnesota? Who are the physicians I should contact?

My local cardiologist is telling me that I need to have a septal myectomy. I need more information and want to understand the threshold parameters for surgery, e.g. LVOT gradient, degree of septal thickening, etc. Even with the beta blockers – Metoprolol 200mg/daily, I have all the symptoms. I’ve had so many tests now, there is no doubt of the diagnosis. Additionally, my family needs testing.

Thanks, Maysa

REPLY

Hi Maysa – Welcome! You are in the right place. While Mayo’s primary HCM program is in Rochester, there are some very capable HCM doctors in Scottsdale, AZ as well. You are lucky that your local doctor is so supportive of your seeking treatment at a specialty center, and you are in really good standing for the future with that set up.

A couple of suggestions: You may want to read this blog article from Dr. Steve Ommen of Rochester’s HCM Clinic about treatment at a specialty center, and how important it is. Dr. Ommen is the director of the Rochester HCM Center.

https://hcmbeat.com/2016/11/20/guest-blogger-the-view-from-a-hcm-center-by-dr-steve-ommen-of-mayo-clinics-hcm-clinic/

Here is a link to a video of Dr. Ommen and one of the surgeons who does myectomy, Dr. Schaff, speaking about myectomy. This is a very good overview.

https://connect.mayoclinic.org/discussion/hypertrophic-cardiomyopathy-and-the-surgical-treatment-apical-myectomy/

Dr. Steve Lester is the head of the HCM practice in Arizona. Here is a video of him speaking about HCM:

And here is a link to the numbers to call to schedule an appointment in either place:
http://mayocl.in/1mtmR63

Wishing you the best as you and your family travel this journey. Feel free to ask any questions you have and we will try to answer.

P.S. there are other resources available to you. On Facebook there is a Mayo Clinic HCM Patients group and the Hypertrophic Cardiomyopathy Association – http://www.4hcm.org has some great resources as does a blog that I happen to write at http://www.hcmbeat.com.

Welcome to the group Maysa. As Cynthia mentioned you have come to the right place. Under Colleen’s direction, The Connect Team is very helpful as well as the Facebook group that Cynthia runs. I have worked at Mayo the past six years in Public Affairs, in Rochester, and had a septal myectomy last year. It was worth it from my personal standpoint. If you decide to come to Rochester for treatment and have interest, I would love to meet with you, in person, and I can share our experience. Just reach out to me on Connect or through the Mayo HCM Patients Facebook group. The care I received was outstanding and the procedure changed my life. These social media groups helped my family and me a great deal in making informed decisions about what was right for us.

@cynaburst

Hi Maysa – Welcome! You are in the right place. While Mayo’s primary HCM program is in Rochester, there are some very capable HCM doctors in Scottsdale, AZ as well. You are lucky that your local doctor is so supportive of your seeking treatment at a specialty center, and you are in really good standing for the future with that set up.

A couple of suggestions: You may want to read this blog article from Dr. Steve Ommen of Rochester’s HCM Clinic about treatment at a specialty center, and how important it is. Dr. Ommen is the director of the Rochester HCM Center.

https://hcmbeat.com/2016/11/20/guest-blogger-the-view-from-a-hcm-center-by-dr-steve-ommen-of-mayo-clinics-hcm-clinic/

Here is a link to a video of Dr. Ommen and one of the surgeons who does myectomy, Dr. Schaff, speaking about myectomy. This is a very good overview.

https://connect.mayoclinic.org/discussion/hypertrophic-cardiomyopathy-and-the-surgical-treatment-apical-myectomy/

Dr. Steve Lester is the head of the HCM practice in Arizona. Here is a video of him speaking about HCM:

And here is a link to the numbers to call to schedule an appointment in either place:
http://mayocl.in/1mtmR63

Wishing you the best as you and your family travel this journey. Feel free to ask any questions you have and we will try to answer.

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Do the physicians at the two centers work together? Consult? Are their capabilities comparable? Or would you recommend Rochester as first choice? Thanks for all this information. I’ll read and look things over now.

@ronaldpetrovich

Welcome to the group Maysa. As Cynthia mentioned you have come to the right place. Under Colleen’s direction, The Connect Team is very helpful as well as the Facebook group that Cynthia runs. I have worked at Mayo the past six years in Public Affairs, in Rochester, and had a septal myectomy last year. It was worth it from my personal standpoint. If you decide to come to Rochester for treatment and have interest, I would love to meet with you, in person, and I can share our experience. Just reach out to me on Connect or through the Mayo HCM Patients Facebook group. The care I received was outstanding and the procedure changed my life. These social media groups helped my family and me a great deal in making informed decisions about what was right for us.

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Would you be willing to share your story with me? How bad was your hypertrophy? Symptoms? LVOT gradient? How was the recovery? I think it would be helpful for me to hear other stories. I’m looking into where to have this done.

@ronaldpetrovich

Welcome to the group Maysa. As Cynthia mentioned you have come to the right place. Under Colleen’s direction, The Connect Team is very helpful as well as the Facebook group that Cynthia runs. I have worked at Mayo the past six years in Public Affairs, in Rochester, and had a septal myectomy last year. It was worth it from my personal standpoint. If you decide to come to Rochester for treatment and have interest, I would love to meet with you, in person, and I can share our experience. Just reach out to me on Connect or through the Mayo HCM Patients Facebook group. The care I received was outstanding and the procedure changed my life. These social media groups helped my family and me a great deal in making informed decisions about what was right for us.

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Absolutely, I’ll share whatever you feel you need. Let’s set up time to talk. How does Thur or Fri look? Feel free to private message me with your availability and contact information.

@ronaldpetrovich

Welcome to the group Maysa. As Cynthia mentioned you have come to the right place. Under Colleen’s direction, The Connect Team is very helpful as well as the Facebook group that Cynthia runs. I have worked at Mayo the past six years in Public Affairs, in Rochester, and had a septal myectomy last year. It was worth it from my personal standpoint. If you decide to come to Rochester for treatment and have interest, I would love to meet with you, in person, and I can share our experience. Just reach out to me on Connect or through the Mayo HCM Patients Facebook group. The care I received was outstanding and the procedure changed my life. These social media groups helped my family and me a great deal in making informed decisions about what was right for us.

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Hi Maysa, Here is how I was diagnosed http://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-the-flu-a-grocery-store-clinic-and-a-mayo-clinic-nurse-may-have-saved-my-life/ .

Following this, several months later I had the surgery. Here is what my physician and I had to say on the Mayo Clinic Radio Show a few months after the surgery. http://newsnetwork.mayoclinic.org/discussion/mayo-clinic-radio-hypertrophic-cardiomyopathysacroiliac-joint-painhot-tubs-and-health/

And then during recovery, here is what rehab was like for me http://newsnetwork.mayoclinic.org/discussion/cardiac-rehab-smart-for-healing-hearts/

Hope this helps a little more.

@ronaldpetrovich

Welcome to the group Maysa. As Cynthia mentioned you have come to the right place. Under Colleen’s direction, The Connect Team is very helpful as well as the Facebook group that Cynthia runs. I have worked at Mayo the past six years in Public Affairs, in Rochester, and had a septal myectomy last year. It was worth it from my personal standpoint. If you decide to come to Rochester for treatment and have interest, I would love to meet with you, in person, and I can share our experience. Just reach out to me on Connect or through the Mayo HCM Patients Facebook group. The care I received was outstanding and the procedure changed my life. These social media groups helped my family and me a great deal in making informed decisions about what was right for us.

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Thanks this is so helpful. Are you willing to share some of your health info? I understand HIPA rights and so if you don’t feel comfortable I understand. I want to get a sense of where my numbers fit in respect to others who have had surgery.

This is what I know about mine:
I was diagnosed this past May 2016 with HCM. They took me off Lisinopril 20mg (for high blood pressure) and put me on Metoprolol 75mg. Only now I’m learning that Lisinopril and other ACE Inhibitors make HCM worse. Well, I’ve been on Lisinopril for 20 years. Even with the beta blockers though, I still have these symptoms: shortness of breath (SOB) and difficulty breathing, dizziness with foggy vision that tunnels in, weakness, fatigue, chest pains, palpitations, difficulty falling asleep or staying asleep, swelling in my hands at night. The symptoms are worse under exertion (lifting, walking, climbing stairs), laying down flat on any surface, or after eating. They have increased the dosage to now 200mg. They put me on exercise restriction: no lifting/pushing/pulling anything >/ 20 lbs, limit exercise to not exceed onset of symptoms.

It’s a long history where I’ve been having symptoms on and off for perhaps 15 – 20 years and as a past marathon runner I just thought that I had some cardio-vascular fitness issues to improve. I’ve been on high-blood pressure medicine for this same length of time. Passed out running on the trail once but thought that it was just my blood pressure getting too low. We were living in Los Alamos at 7400′ so I thought it was the altitude as well; apparently not. Moved to Tucson, where about five years ago, a nurse pathologist at a CVS Minute Clinic thought she heard a murmur. When I went to my regular Family Medicine doc, he didn’t hear a thing. So, again nothing was done about my shortness of breath. Went on a rigid diet, lost 20lbs and it improved. Well, I just moved to Albuquerque last year and after a bout of walking pneumonia, I went to see a new Family Medicine doc and that’s when they heard a heart murmur (again) and sent me immediately to the heart hospital which led to a long battery of tests from May until this past December 5, 2016 covering an Echo/Doppler Echo, multiple EKGs, Cardiac MRI, a month long halter monitor, a Echo Stress Test – all of these (re)confirming the diagnosis of HCM.

Echo Stress Test Results:
Rest 118/78 (91) LVOT obstruction gradient 76 mmHg
Stress 162/74 (103) –
Post Stress 126/74 (91) LVOT obstruction gradient 142 mmHg

Maximal heart rate during stress: 151 bpm (92% Max Predicted Heart Rate)
Predicted max heart rate: 164 bpm
Target heart rate was achieved, response to stress was normal with stress-induced chest pain when exercised for 9 minutes, protocol stage 3and a max work rate of 10.1 mets. Exercise terminated due to dyspnea and fatique. Functional capacity was decreased for age.
Impressions: Asymmetric septal hypertrophy

Transthoracic Echocardiography Results:
Overall left ventricular systolic function was hyperdynamic. Estimated ejection fraction was 70%. There was moderate asymmetric hypertrophy of the septum, with an appearance of eccentric hypertrophy, consistent with hypertrophic cardiomyopathy. There was dynamic obstruction during Valsalva in the outflow tract with a peak gradient of 91 mm/Hg. Abnormal relaxation with normal filling pressures. Left atrium was mildly dilated. No stenosis.

Cardiac MRI Results:
Significantly thickened basal septum measuring 19 – 22 mm at the inferior basal and anterior basal septum (7:00 and 11:00) at the end of diastole on short axis view is concerning for asymmetrical hypertrophic cardiomyopathy, septal type. No myocardial scar or fibrosis. Hyperdynamic left ventricle with ejection fraction of 80%. Moderate mitral regurgitation and left atrial enlargement measuring 54 mm in maximal transverse dimension and 28 sq cm in maximal cross-sectional area at the end of systole.

@ronaldpetrovich

Welcome to the group Maysa. As Cynthia mentioned you have come to the right place. Under Colleen’s direction, The Connect Team is very helpful as well as the Facebook group that Cynthia runs. I have worked at Mayo the past six years in Public Affairs, in Rochester, and had a septal myectomy last year. It was worth it from my personal standpoint. If you decide to come to Rochester for treatment and have interest, I would love to meet with you, in person, and I can share our experience. Just reach out to me on Connect or through the Mayo HCM Patients Facebook group. The care I received was outstanding and the procedure changed my life. These social media groups helped my family and me a great deal in making informed decisions about what was right for us.

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Hi Maysa, I’m OK sharing things but something very important to mention. When I met with the physicians, they said very simply, it’s a matter of how you feel and that’s the main barometer. I too had run marathon’s and when I couldn’t walk just one house away or up a few stairs, I knew I was having problems. Please connect with me via a private message over this forum and let’s talk. Thanks

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