Share this:
lina2017
@lina2017

Posts: 19
Joined: Jan 30, 2017

septal myectomy and mitral valve repair

Posted by @lina2017, Feb 2, 2017

My husband is diagnosed with hypertrophic cardiomyopathy in 2007 .He is on toprol all these years.but now having some syptoms like shortness of breath and moderate mitral insufficency .He needs to get a valve repair.we are fro texas and i coudnt find a good hospital for these two procedures .Any recommendation about the hospitals ?Is there any complication after the myectomy .

REPLY

Hi @lina2017, welcome to Connect.
I moved your message to the Hypertrophic Cardiomyopathy (HCM) group on Connect. I encourage to read through the various discussions in the group where you’ll meet many people who share your husband’s experience.

– Hypertrophic Cardiomyopathy (HCM) group http://mayocl.in/2eJdqOc

I’d like to tag specifically @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @FrancineFafard @lisa7 @lucindag @23273333 @li @margie11 @fishinglady @lisa7 @lisab62 @debcrawford @onewholovesrock @1949 @mbcube who can tell you more about finding a good hospital, valve repair and/or symptoms post myectomy.

Lina, what part of the world do you live in?

@colleenyoung

Hi @lina2017, welcome to Connect.
I moved your message to the Hypertrophic Cardiomyopathy (HCM) group on Connect. I encourage to read through the various discussions in the group where you’ll meet many people who share your husband’s experience.

– Hypertrophic Cardiomyopathy (HCM) group http://mayocl.in/2eJdqOc

I’d like to tag specifically @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @FrancineFafard @lisa7 @lucindag @23273333 @li @margie11 @fishinglady @lisa7 @lisab62 @debcrawford @onewholovesrock @1949 @mbcube who can tell you more about finding a good hospital, valve repair and/or symptoms post myectomy.

Lina, what part of the world do you live in?

Jump to this post

When it comes time for me to have my Myectomy, I will be going to the Mayo Clinic in Rochester MN. My Cardiologist at the University of Iowa Hospital and Clinics highly recommends them. He has said that they do a higher number of Myectomys at Rochester. Thoughts and prayers for your husband.

I traveled to Mayo for mine (as most of us had to). Most doctors think when looking at an echo that its related to Mitral Valve prolapse. It sometimes caused by the septum being so big it interferes with the valves function. So DO see an expert. Here is a link to doctors http://www.4hcm.org/coe

I agree with what everyone else has said. It is really imperative to go to a center that is expert on dealing with HCM. I traveled to Mayo Clinic in Minnesota from California in order to have mine. Valve repair is sometimes not necessary at all after myectomy and if it is, they can both be done simultaneously. Would you be able and willing to travel for surgery? That would be your best bet.

My father had a septal myectomy and a triple bypass, done at the same time, 5 years ago. His doctors told him the exact same thing that “mcube” said here, that the abnormal thickness of the septal wall was pressing against the mitral valve and preventing it from working properly. Once the surgeon reduced the thickness of the wall, the mitral valve worked fine. I agree with others here and recommend that your husband seek treatment at a hospital that has a high volume of HCM patients. Wishing you and your husband all the best.

@margie11

My father had a septal myectomy and a triple bypass, done at the same time, 5 years ago. His doctors told him the exact same thing that “mcube” said here, that the abnormal thickness of the septal wall was pressing against the mitral valve and preventing it from working properly. Once the surgeon reduced the thickness of the wall, the mitral valve worked fine. I agree with others here and recommend that your husband seek treatment at a hospital that has a high volume of HCM patients. Wishing you and your husband all the best.

Jump to this post

Thank you so much ! how long was the wait to get an appointment for surgery ?

@cynaburst

I agree with what everyone else has said. It is really imperative to go to a center that is expert on dealing with HCM. I traveled to Mayo Clinic in Minnesota from California in order to have mine. Valve repair is sometimes not necessary at all after myectomy and if it is, they can both be done simultaneously. Would you be able and willing to travel for surgery? That would be your best bet.

Jump to this post

yes..We would like to travel to Mayo .

I was able to schedule my surgery and evaluation on the same visit. If you already know that you will likely need surgery, they can schedule you for testing for the first day or two of your visit, and surgery shortly after as long as they agree that surgery is warranted. You can call this number for cardiovascular scheduling at Mayo Clinic Rochester, and they can help you figure it out: 507-284-3994. I waited a few months for mine, but I wanted a specific surgeon and cardiologist and needed to make family arrangements.

It you want to read about my myectomy you can read my blog that I wrote at the time at:

http://www.cynthiassummeradventure.blogspot.com

Also, my current blog has a page of resources for people undergoing myectomy:

https://hcmbeat.com/resources/resources-for-patients-about-myectomy/

Best of luck to you.

@cynaburst

I agree with what everyone else has said. It is really imperative to go to a center that is expert on dealing with HCM. I traveled to Mayo Clinic in Minnesota from California in order to have mine. Valve repair is sometimes not necessary at all after myectomy and if it is, they can both be done simultaneously. Would you be able and willing to travel for surgery? That would be your best bet.

Jump to this post

Hello @lina2017! I wish you well with your travels to Mayo. Attached here- http://mayocl.in/2jGPdO7 is the contact information for obtaining your first appointment. When you call to initiate your first appointment you will be greeted by a Appointment coordinator specialist who will get you set up in the right area. This will be a good time to ask the question about wait time for surgery. This will be the start of your Mayo Clinic experience.

You may be interested in reviewing discussion in our traveling to Mayo Clinic group (https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/). Here you will find discussion with other members on what to expect when coming to Mayo. Within these discussions there are a bounty of tips from other members who have experienced Mayo Clinic first hand. Please feel free to reach out to any members of the Mayo Clinic Connect community if you have any questions.

Please keep us updated along the way with your journey at Mayo. For the sake of future members reading this thread, would you mind letting us know about the wait time for your husbands appointment and surgery? It will benefit others along the way. Thank you!

Liked by debcrawford

@margie11

My father had a septal myectomy and a triple bypass, done at the same time, 5 years ago. His doctors told him the exact same thing that “mcube” said here, that the abnormal thickness of the septal wall was pressing against the mitral valve and preventing it from working properly. Once the surgeon reduced the thickness of the wall, the mitral valve worked fine. I agree with others here and recommend that your husband seek treatment at a hospital that has a high volume of HCM patients. Wishing you and your husband all the best.

Jump to this post

My father’s surgery had to be done quickly, he had a heart attack and tests revealed that he had HCM. The septal myectomy and triple bypass surgery was done at Columbia Presbyterian Hospital in NYC about 42 hours after the heart attack, and lasted 9-1/2 hours. He was discharged 8 days later and was very tired the first few days after returning home, but progressed quicker after that and got back to his usual routine within about 3-4 months.

Hope this helps, good luck!

@cynaburst

I was able to schedule my surgery and evaluation on the same visit. If you already know that you will likely need surgery, they can schedule you for testing for the first day or two of your visit, and surgery shortly after as long as they agree that surgery is warranted. You can call this number for cardiovascular scheduling at Mayo Clinic Rochester, and they can help you figure it out: 507-284-3994. I waited a few months for mine, but I wanted a specific surgeon and cardiologist and needed to make family arrangements.

It you want to read about my myectomy you can read my blog that I wrote at the time at:

http://www.cynthiassummeradventure.blogspot.com

Also, my current blog has a page of resources for people undergoing myectomy:

https://hcmbeat.com/resources/resources-for-patients-about-myectomy/

Best of luck to you.

Jump to this post

Thanks a lot !!We send the reports to clevland too..we havnt seen a surgeon yet .The cardiologist told us that my husband needs a valve surgery not about the septal myectomy .he has symptoms related to thickness .i am really confused and worried ..

we got an appointment with dr Zayed at mayo clinic .but i coudnt find any reviews about him .who was your surgeon ?

@lina2017

we got an appointment with dr Zayed at mayo clinic .but i coudnt find any reviews about him .who was your surgeon ?

Jump to this post

Which Mayo location are you going to? The only Dr. Zayed I find is a family medicine doc at a satellite location.

Rochester MN .i think it is DR Said .I asked for dr Scaff ..Do you thibk we have to go for a consultation first and then for surgery? .Beacuse they asked us we can do both in one trip.

@lina2017

we got an appointment with dr Zayed at mayo clinic .but i coudnt find any reviews about him .who was your surgeon ?

Jump to this post

Did you get a pacemaker or defibrillator after the surgery ?

Please login or register to post a reply.