Share this:

lina2017
@lina2017

Posts: 18
Joined: Jan 30, 2017

septal myectomy and mitral valve repair

Posted by @lina2017, Thu, Feb 2 9:07pm

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 .

Reply


Colleen Young, Connect Director
@colleenyoung

Posts: 3893
Joined: Jul 23, 2014
Posted by @colleenyoung, Fri, Feb 3 12:41pm

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
@debcrawford

Posts: 21
Joined: Oct 21, 2016
Posted by @debcrawford, Fri, Feb 3 12:57pm

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.


carjes
@carjes

Posts: 6
Joined: Apr 01, 2017
Posted by @carjes, Sun, Apr 2 9:44am

I am a patient of the U of I and I am wondering who your cardiologist is ?


debcrawford
@debcrawford

Posts: 21
Joined: Oct 21, 2016
Posted by @debcrawford, Sun, Apr 2 10:22am

Hi! I live in rural Keota and doctor at the U of I. My dad has HOCM and so do I. My dad sees Dr.Lindower, he was the one who recommended having his kids tested. I was tested and I inherited it ftom him, I thought it best to stick with him because he knows my dads history. My HOCM has progressed way faster than my dads, thsts when Dr.Lindower suggested I see a genetic Cardiologist. Now I see Dr.Ahmad at the U. I absolutely love him, he takes so much time with ne and really explains things well, and a very caring man. This month when I go see him we are going to discuss again if he should send me to Mayo. He wants me to have Dr.Lommen and Dr, Schaff as one of my doctors. I think you would really like Dr.Ahmad.


carjes
@carjes

Posts: 6
Joined: Apr 01, 2017
Posted by @carjes, Sun, Apr 2 10:28am

I actually see Dr Coterlan for my HCM and then my 15 year old daughter was Dx in January and she see Dr Eric Edens. Both have been fabulous so far. I have four children total and just found out this week that 3 out of the 4 have the gene and one is symptomatic. We have an appointment at the end of the month and will ask to be set up with a genetic counselor as I would like to know more Have you seen a genetic counselor yet?


debcrawford
@debcrawford

Posts: 21
Joined: Oct 21, 2016
Posted by @debcrawford, Sun, Apr 2 11:10am

Dr.Ahmad is the Genetic Cardiologist, i have 3 kids and have gone through with the genetic testing. Mine came back as negative, but they are constantly adding new mutations….so this means it still could pop up as positive for my kids. I am so sorry your kids have it, its scary to think about what they have instore for them. But so glad they have caught it early and can get them on the proper meds to slow it down.


debcrawford
@debcrawford

Posts: 21
Joined: Oct 21, 2016
Posted by @debcrawford, Sun, Apr 2 11:12am

Do you have a ICD in place?


carjes
@carjes

Posts: 6
Joined: Apr 01, 2017
Posted by @carjes, Sun, Apr 2 11:21am

Not yet but feeling that time is getting much closer for me as the last increase in medications has not been working so well.


debcrawford
@debcrawford

Posts: 21
Joined: Oct 21, 2016
Posted by @debcrawford, Sun, Apr 2 11:36am

Dr.Ahmad and Dr.Mazur insisted I get one when I started fainting soells and also to be able to increase my meds. It hasent made me feel any better, buts its definitely a safety net if I go into sudden death.


carjes
@carjes

Posts: 6
Joined: Apr 01, 2017
Posted by @carjes, Sun, Apr 2 12:07pm

Good to know. I am just to the point of constant dizziness and have not fainted yet so hopefully that is awhile for me. Best of luck and thank you answering me.


debcrawford
@debcrawford

Posts: 21
Joined: Oct 21, 2016
Posted by @debcrawford, Sun, Apr 2 3:19pm

Hope I helped a little, its just nice to have someone to talk to from Iowa who has it! No one around here has really heard of it other than my dad and they don’t understand how bad I feel all the time!


mbcube
@mbcube

Posts: 12
Joined: Oct 25, 2016
Posted by @mbcube, Fri, Feb 3 1:26pm

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, Volunteer Mentor
@cynaburst

Posts: 230
Joined: Dec 26, 2014
Posted by @cynaburst, Fri, Feb 3 2:02pm

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
@lina2017

Posts: 18
Joined: Jan 30, 2017
Posted by @lina2017, Sat, Feb 4 2:55pm

yes..We would like to travel to Mayo .


Jamie Olson, Connect Moderator
@jamienolson

Posts: 268
Joined: Apr 21, 2016
Posted by @jamienolson, Sat, Feb 4 5:02pm

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!

Liked by debcrawford

Please login or register to post a reply.