1. < Hypertrophic Cardiomyopathy (HCM)

Myectomy with valve replacement

Posted by jillheart @jillheart, Nov 25, 2016

Wondering if anyone here has undergone myectomy together with aortic valve replacement? I'm scheduled for consult at Mayo next week, on referral from my cardiologist, sound very likely they are recommending both procedures, and if so will plan it for late spring. Interested to know if this might add time to the typical recovery period. Thanks!

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

mbcube | @mbcube | Feb 3, 2017
In reply to @lina2017 "My husband is diagnosed with hypertrophic cardiomyopathy in 2007 .He is on toprol all these years.but..." + (show)
@lina2017

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 .

Jump to this post

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

REPLY
Cynaburst, Alumna Mentor | @cynaburst | Feb 3, 2017
In reply to @lina2017 "My husband is diagnosed with hypertrophic cardiomyopathy in 2007 .He is on toprol all these years.but..." + (show)
@lina2017

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 .

Jump to this post

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.

REPLY
2 replies
Margie11 | @margie11 | Feb 3, 2017
In reply to @lina2017 "My husband is diagnosed with hypertrophic cardiomyopathy in 2007 .He is on toprol all these years.but..." + (show)
@lina2017

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 .

Jump to this post

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.

REPLY
2 replies
lina2017 | @lina2017 | Feb 4, 2017
In reply to @margie11 "My father had a septal myectomy and a triple bypass, done at the same time, 5..." + (show)
@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 ?

REPLY
lina2017 | @lina2017 | Feb 4, 2017
In reply to @cynaburst "I agree with what everyone else has said. It is really imperative to go to a..." + (show)
@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 .

REPLY
Cynaburst, Alumna Mentor | @cynaburst | Feb 4, 2017
In reply to @lina2017 "My husband is diagnosed with hypertrophic cardiomyopathy in 2007 .He is on toprol all these years.but..." + (show)
@lina2017

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 .

Jump to this post

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.

REPLY
1 reply
Jamie Olson | @jamienolson | Feb 4, 2017
In reply to @cynaburst "I agree with what everyone else has said. It is really imperative to go to a..." + (show)
@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!

REPLY
Margie11 | @margie11 | Feb 4, 2017
In reply to @margie11 "My father had a septal myectomy and a triple bypass, done at the same time, 5..." + (show)
@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!

REPLY
lina2017 | @lina2017 | Feb 9, 2017
In reply to @cynaburst "I was able to schedule my surgery and evaluation on the same visit. If you already..." + (show)
@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 ..

REPLY
lina2017 | @lina2017 | Feb 16, 2017
In reply to @lina2017 "My husband is diagnosed with hypertrophic cardiomyopathy in 2007 .He is on toprol all these years.but..." + (show)
@lina2017

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 .

Jump to this post

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

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.