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.

Cynaburst, Alumna Mentor | @cynaburst | Feb 16, 2017
In reply to @lina2017 "we got an appointment with dr Zayed at mayo clinic .but i coudnt find any reviews..." + (show)
@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.

REPLY
lina2017 | @lina2017 | Feb 17, 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

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.

REPLY
lina2017 | @lina2017 | Feb 17, 2017
In reply to @lina2017 "we got an appointment with dr Zayed at mayo clinic .but i coudnt find any reviews..." + (show)
@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 ?

REPLY
Cynaburst, Alumna Mentor | @cynaburst | Feb 17, 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

You can do both in one trip. It is up to you. I did both in one trip and scheduled it that way on purpose.

I already had an ICD before the myectomy so that didn't change anything. The surgery shouldn't require you to have one unless you already had an alcohol ablation. The only reason for an ICD would be if you have enough risk factors which make you at risk for sudden death.

REPLY
1 reply
lina2017 | @lina2017 | Feb 17, 2017
In reply to @cynaburst "You can do both in one trip. It is up to you. I did both in..." + (show)
@cynaburst

You can do both in one trip. It is up to you. I did both in one trip and scheduled it that way on purpose.

I already had an ICD before the myectomy so that didn't change anything. The surgery shouldn't require you to have one unless you already had an alcohol ablation. The only reason for an ICD would be if you have enough risk factors which make you at risk for sudden death.

Jump to this post

Thank you so much !! I checked with the clinic today regarding the surgeon .There is one Dr Said who is doing this surgery ..But i am not confident ,so i might be doing the surgery with Dr schaff in May ..

REPLY
Cynaburst, Alumna Mentor | @cynaburst | Feb 17, 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

Then it must be this doctor:

http://www.mayoclinic.org/biographies/said-sameh-m-m-d/bio-20149338

I do not know him, but I am sure Mayo would not let him operate unless he was properly trained. I know that they were training someone else do myectomy surgery as the demand is increasing.

REPLY
lina2017 | @lina2017 | Feb 23, 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

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 .

REPLY
7 replies
Cynaburst, Alumna Mentor | @cynaburst | Feb 23, 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

I had an extended myectomy 10 1/2 years ago and am doing great. Best advice is to go with a very experienced surgeon. I also have concentric hypertrophy (the thickness all over) and the surgery helped me tremendously and I am nowhere close to transplant. Mayo Clinic and Cleveland Clinic are top two in U.S. Where are you located?

REPLY
mbcube | @mbcube | Feb 24, 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

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.

REPLY
2 replies
lina2017 | @lina2017 | Feb 25, 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.

Jump to this post

Thank you so much !!

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