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!

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lina2017 | @lina2017 | Feb 25, 2017
In reply to @lina2017 "please help.I went with my husband today to see a local surgeon just for consultation.My husband..." + (show)
@lina2017

please help.I went with my husband today to see a local surgeon just for consultation.My husband has Hcm with SAM septal.He told us he has the thickness all over and if he do the septal myectomy he will ended up for transplantaion in 5 yrs .That freaked me out .
Is it extended myectomy for those who having this type of thickness?
i saw from your post that you had an extended myectomy .

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I am in Austin texas ..I got an appointment with dr oommen and schaff in April. Did you also have a SAM hypertrophie ?

REPLY
Cynaburst, Alumna Mentor | @cynaburst | Feb 25, 2017
In reply to @lina2017 "please help.I went with my husband today to see a local surgeon just for consultation.My husband..." + (show)
@lina2017

please help.I went with my husband today to see a local surgeon just for consultation.My husband has Hcm with SAM septal.He told us he has the thickness all over and if he do the septal myectomy he will ended up for transplantaion in 5 yrs .That freaked me out .
Is it extended myectomy for those who having this type of thickness?
i saw from your post that you had an extended myectomy .

Jump to this post

Yes I did. He is in great hands at Mayo, I have felt much better since my surgery. There is much they can do with myectomy at Mayo and you see with the right surgeon in case your husband needs an apical approach as well.

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Ron Petrovich | @ronaldpetrovich | Feb 26, 2017
In reply to @lina2017 "please help.I went with my husband today to see a local surgeon just for consultation.My husband..." + (show)
@lina2017

please help.I went with my husband today to see a local surgeon just for consultation.My husband has Hcm with SAM septal.He told us he has the thickness all over and if he do the septal myectomy he will ended up for transplantaion in 5 yrs .That freaked me out .
Is it extended myectomy for those who having this type of thickness?
i saw from your post that you had an extended myectomy .

Jump to this post

HI Lina, If you would have interest in meeting in person while in Rochester, just please message me and we can try to connect. I work in Public Affairs at Mayo and had a septal myectomy and double bypass in December of 2015. I feel so much better after this procedure, and there are few things I might be able to share to make your experience even more positive, depending on whether or not you have surgery. Dr. Schaff did my surgery and I am familiar with Dr.Ommen. Both are fantastic. Good luck.

REPLY
lina2017 | @lina2017 | Feb 28, 2017
In reply to @lina2017 "please help.I went with my husband today to see a local surgeon just for consultation.My husband..." + (show)
@lina2017

please help.I went with my husband today to see a local surgeon just for consultation.My husband has Hcm with SAM septal.He told us he has the thickness all over and if he do the septal myectomy he will ended up for transplantaion in 5 yrs .That freaked me out .
Is it extended myectomy for those who having this type of thickness?
i saw from your post that you had an extended myectomy .

Jump to this post

Thanks Ronald ..That is so great .i have now the appoinment with dr Ommen and Schaff on April 17th.hope i can meet you in person.

REPLY
lina2017 | @lina2017 | Feb 28, 2017
In reply to @mbcube "Often when a doctor's knowledge is limited on HCM, they say things that may not be..." + (show)
@mbcube

Often when a doctor's knowledge is limited on HCM, they say things that may not be based on fact. (similar to a certain president I know). Just because he's a doctor in a big hospital does not mean he's up to date on HCM. During my pre AICD, Pre myectomy days with a lousy HMO, Thy had me see 12 doctors. Some of LA County's finest and the limited experience with HCM was shocking. It may be worse in smaller communities. Seek help at an COE.

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Thank you mbcube ..

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lina2017 | @lina2017 | Feb 28, 2017
In reply to @lina2017 "please help.I went with my husband today to see a local surgeon just for consultation.My husband..." + (show)
@lina2017

please help.I went with my husband today to see a local surgeon just for consultation.My husband has Hcm with SAM septal.He told us he has the thickness all over and if he do the septal myectomy he will ended up for transplantaion in 5 yrs .That freaked me out .
Is it extended myectomy for those who having this type of thickness?
i saw from your post that you had an extended myectomy .

Jump to this post

Thank you ...

REPLY
Ron Petrovich | @ronaldpetrovich | Mar 1, 2017
In reply to @lina2017 "please help.I went with my husband today to see a local surgeon just for consultation.My husband..." + (show)
@lina2017

please help.I went with my husband today to see a local surgeon just for consultation.My husband has Hcm with SAM septal.He told us he has the thickness all over and if he do the septal myectomy he will ended up for transplantaion in 5 yrs .That freaked me out .
Is it extended myectomy for those who having this type of thickness?
i saw from your post that you had an extended myectomy .

Jump to this post

Sounds good. As we get closer to the date, please send me a private message via this forum with your contact information, and we can do our best to connect. Group rules don't like it if personal information is sent over the group communication. Best of luck, hope to see you. Thanks, Ron

REPLY
Cynaburst, Alumna Mentor | @cynaburst | Mar 8, 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

@lina2017 so glad to hear that you are on the right path now. You will be so happy you traveled to Mayo.
Here are some myectomy resources that you might find helpful from a blog I write about HCM:
https://hcmbeat.com/resources/resources-for-patients-about-myectomy/

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1 reply
lina2017 | @lina2017 | Mar 9, 2017
In reply to @cynaburst "@lina2017 so glad to hear that you are on the right path now. You will be..." + (show)
@cynaburst

@lina2017 so glad to hear that you are on the right path now. You will be so happy you traveled to Mayo.
Here are some myectomy resources that you might find helpful from a blog I write about HCM:
https://hcmbeat.com/resources/resources-for-patients-about-myectomy/

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Thank you so much Cynaburst..

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 30, 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

Hi @lina2017,
I thought I'd check in to see how you and your husband are doing. April is just around the corner. Do you have any questions are you prepare to come to Mayo?

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