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lina2017

septal myectomy and mitral valve repair

Posted by @lina2017 in Hypertrophic Cardiomyopathy (HCM), Thu, Feb 2 at 9:07pm CDT

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 .

colleenyoung

Posted by @colleenyoung, Fri, Feb 3 at 12:41pm CDT

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?

debcrawford

Posted by @debcrawford, Fri, Feb 3 at 12:57pm CDT

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.

mbcube

Posted by @mbcube, Fri, Feb 3 at 1:26pm CDT

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

cynaburst

Posted by @cynaburst, Fri, Feb 3 at 2:02pm CDT

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.

lina2017

Posted by @lina2017, Sat, Feb 4 at 2:55pm CDT

yes..We would like to travel to Mayo .

jamienolson

Posted by @jamienolson, Sat, Feb 4 at 5:02pm CDT

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!

debcrawford likes this
margie11

Posted by @margie11, Fri, Feb 3 at 9:28pm CDT

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.

lina2017

Posted by @lina2017, Sat, Feb 4 at 2:54pm CDT

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

margie11

Posted by @margie11, Sat, Feb 4 at 7:48pm CDT

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

Posted by @cynaburst, Sat, Feb 4 at 5:00pm CDT

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.

lina2017

Posted by @lina2017, Thu, Feb 9 at 11:19am CDT

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 ..

lina2017

Posted by @lina2017, Thu, Feb 16 at 8:40pm CDT

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

cynaburst

Posted by @cynaburst, Thu, Feb 16 at 8:52pm CDT

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

lina2017

Posted by @lina2017, Fri, Feb 17 at 9:44am CDT

Did you get a pacemaker or defibrillator after the surgery ?

lina2017

Posted by @lina2017, Fri, Feb 17 at 8:42am CDT

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.

cynaburst

Posted by @cynaburst, Fri, Feb 17 at 10:12am CDT

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.

lina2017

Posted by @lina2017, Fri, Feb 17 at 5:10pm CDT

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

Posted by @cynaburst, Fri, Feb 17 at 5:19pm CDT

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

Posted by @lina2017, Thu, Feb 23 at 10:37pm CDT

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

Posted by @cynaburst, Thu, Feb 23 at 11:08pm CDT

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?

lina2017

Posted by @lina2017, Sat, Feb 25 at 10:15pm CDT

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

cynaburst

Posted by @cynaburst, Sat, Feb 25 at 11:19pm CDT

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.

ronaldpetrovich

Posted by @ronaldpetrovich, Sun, Feb 26 at 10:38am CDT

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.

lina2017

Posted by @lina2017, Tue, Feb 28 at 9:15pm CDT

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.

lina2017

Posted by @lina2017, Tue, Feb 28 at 9:17pm CDT

Thank you ...

ronaldpetrovich

Posted by @ronaldpetrovich, Wed, Mar 1 at 7:31am CDT

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

mbcube

Posted by @mbcube, Fri, Feb 24 at 7:45pm CDT

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

Posted by @lina2017, Sat, Feb 25 at 10:13pm CDT

Thank you so much !!

lina2017

Posted by @lina2017, Tue, Feb 28 at 9:16pm CDT

Thank you mbcube ..

cynaburst

Posted by @cynaburst, Wed, Mar 8 at 9:05pm CDT

@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/

lina2017

Posted by @lina2017, Thu, Mar 9 at 11:18pm CDT

Thank you so much Cynaburst..

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