4.5 cm., Marfan, 65 old, otherwise healthy, and severe Mitral valve re

Posted by 10250kam @10250kam, Jul 15 2:58pm

During a routine checkup with my primary, he sent me to a new cardiologist. No change in my ascending aorta for past 10-14 years. At 4.5 cm. Before that at 4.0 cm. since I was 30 years old. Currently 2 moths short of 65. Healthy male otherwise. So really only a 0.5 cm. change in 30 years. With some evidence of aortic aneurysm and Marfan in family history, I have been monitoring change. I tried Beta blockers earlier, but came off of them. I also continued moderate weight ( 130 lbs. max ) during my exercises.

So now my new cardiologist is strongly underscoring aortic repair at 4.5 cm. for healthy person. I recently had Echocardiogram, MRI with contrast, and even Transesophageal Echocardiogram ( TEE ) to get a closer look at my severely regurgitating Mitral vale and aorta. Looks like a rupture in one of my Chordae Tendinae. I suspect this has to be fixed. Hopefully a minimally invasive valve repair.

A gut punch. For past 30 years....really most of my life...I've tried to keep check of my weight, exercise, diet, and lifestyle. I am 5'7" inches now and 152 lbs. Only 20 lbs. heavier that my college weight. Now this news.

Any thoughts if I should get an aortic repair now while I am still healthy or hedge my bets for another 10-20 years? I had pectus excavadum surgery in 1977. Cataract surgery already on both eyes. Detached retina in one. Rupture achilles. Docs all claim I have Marian's Syndrome , although I have not been genetically tested.

I have my first meeting with surgeon next month. I am in northern Virginia. So INOVA is our big hospital system. Any thoughts, experience, words of advice. Last thing I wanted to hear going into my golden years. In the meantime, I am getting genetic for Marfan now that it's available. Any thoughts on making a trip to Mayo Clinic?

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

celia16 | @celia16 | Jul 15 3:24pm

It’s so good you are so well informed about your condition. Information always helps me process things. Can you get a second opinion? My dad has an Aortic aneurysm at 4.3, due to long standing heart disease since 2000. He’s 87 and he treats with meds.

My brother has one due to an injury from auto accident. His doctors at Duke advised him against any surgical intervention. I don’t know his number.

Everyone is different. So, it sounds like you will be able to get the info and select your option.

sabrinaivey | @sabrinaivey | Jul 16 10:19am

@10250kam It seems as though your AA isn't getting much bigger at all. I would definitely get a second opinion. It's such a difficult call because we just never know. Are you male or female? I only ask because I have read that women are less predictable than men with this issue.

pamela78 | @pamela78 | Jul 16 11:24am

I just saw my cardiologist this morning and we talked about surgery. I asked if a big teaching hospital like Mayo or the Cleveland Clinic would be a good idea. We have a very good cardiology dept. here where I live and my doctor told me that the surgeon you'd have at Mayo would be a resident with an attending supervising. In other words, someone without a lot of experience. I'm going to stay here and go with the mid-career, very experienced surgeon. You went a long time without an increase in your number.

10250kam | @10250kam | Jul 16 11:31am

In reply to @sabrinaivey "@10250kam It seems as though your AA isn't getting much bigger at all. I would definitely..." + (show)

I am 64 year male. From what I've read and my general cardiologist ( nor surgeon ) tells me is 4.5 cm. the new protocol for healthy candidates with Marfans Syndrome. I haven't met with surgeon yet. Just last night, I read that the lifespan for elective ( proactive ) aorta repair before aneurysm is normal life expectancy. With aneurysm a who different ball game. I also may be candidate with EVAR method; catheter method of repair vs. open chest.

I'll know more later in August after meeting with INOVA surgeon. Thank you.

sabrinaivey | @sabrinaivey | Jul 16 1:22pm

In reply to @10250kam "I am 64 year male. From what I've read and my general cardiologist ( nor surgeon..." + (show)

@10250kam Good luck with everything. Out of curiosity, as I also have an ascending TAA, they told you that you may be a candidate for EVAR? I didn't think that was done for ascending TAAs. I only ask because if that is the case, I would prefer that as well if I need surgery down the line. TIA. ~S

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