lina2017
@lina2017
@lina2017
Posts: 19
Joined: Jan 30, 2017
septal myectomy and mitral valve repair
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 .
lina2017
@lina2017
@lina2017
Posts: 19
Joined: Jan 30, 2017
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.
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 ..
Cynaburst, Alumna Mentor
@cynaburst
@cynaburst
Posts: 272
Joined: Dec 26, 2014
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.
lina2017
@lina2017
@lina2017
Posts: 19
Joined: Jan 30, 2017
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 .
Cynaburst, Alumna Mentor
@cynaburst
@cynaburst
Posts: 272
Joined: Dec 26, 2014
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 .
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?
mbcube
@mbcube
@mbcube
Posts: 28
Joined: Oct 25, 2016
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.
lina2017
@lina2017
@lina2017
Posts: 19
Joined: Jan 30, 2017
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.
Thank you so much !!
lina2017
@lina2017
@lina2017
Posts: 19
Joined: Jan 30, 2017
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 .
I am in Austin texas ..I got an appointment with dr oommen and schaff in April. Did you also have a SAM hypertrophie ?
Cynaburst, Alumna Mentor
@cynaburst
@cynaburst
Posts: 272
Joined: Dec 26, 2014
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 .
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.
Ron Petrovich
@ronaldpetrovich
@ronaldpetrovich
Posts: 31
Joined: Feb 07, 2011
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 .
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.
Liked by Cynaburst, Alumna Mentor
lina2017
@lina2017
@lina2017
Posts: 19
Joined: Jan 30, 2017
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 .
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.
Liked by Cynaburst, Alumna Mentor
lina2017
@lina2017
@lina2017
Posts: 19
Joined: Jan 30, 2017
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.
Thank you mbcube ..
lina2017
@lina2017
@lina2017
Posts: 19
Joined: Jan 30, 2017
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 .
Thank you …
Ron Petrovich
@ronaldpetrovich
@ronaldpetrovich
Posts: 31
Joined: Feb 07, 2011
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 .
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
Cynaburst, Alumna Mentor
@cynaburst
@cynaburst
Posts: 272
Joined: Dec 26, 2014
@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/
Liked by Kanaaz Pereira, Connect Moderator
@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.