Early surgery: Can I get aortic aneurysm repair before it's 5.0?

Posted by ontogenyx @ontogenyx, Sep 26, 2020

I have a 4.1 ascending aortic aneurysm, and my local cardiologist tells me what every other one tells me, including Cleveland Clinic and Mayo. No surgery considered until 5.0, if valves are in good shape (mine are, except for 5% regurgitation).

The rationale offered for waiting: the risk of the surgery is greater than the risk of an event resulting from the aneurysm before it reaches 5.0. Meanwhile, I am told to limit myself to moderate exercise and to take drugs, in hopes of slowing growth of aneurysm.

I will be 71 next month, in good health, and very active. I am more interested in getting the repair done now so that I can resume a full life, rather than waiting around until I get feeble and less likely to have a good result when they eventually open me up for repair. I am much more willing to accept the risk of the surgery now than I will be 10 years down the road. I know, I know–it might never even require surgery–in which case, I can continue my life of "moderate exercise" until my number is finally up. Not interested.

Does anyone know a top surgeon who is willing to talk with me about getting this done now or in the near future?

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

@amandajro

Hello @kanon and welcome to Mayo Clinic Connect, where members get and give support. I am sorry to hear of your recent discovery. How can members best support you going into your next appointment Thursday?

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Thank you. Just wondering if anyone had the surgery before the aneurysm reached the 5.0 to 5.5 cm threshold because of a connective tissue disorder.

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I had my surgery early… I don’t have a diagnosed tissue disorder but my aneurysms were caused by congenital anomalies that Dr.Pochettino said made him concerned. He told me many times my congenital defects were seen with connective disorders so that was the guidelines he wanted to go by. My aortic aneurysm was 3.5 and my left subclavian aneurysm was 3.0 when he did my surgery a little over a year ago. I flew to Mayo and 10 days later was able to fly home. Mayo was amazing and I truly believe they saved my life.

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Hi Kanon. I had a TAA that had grown to 4.6, first discovered in 2018. Eventually I learned I also had a BAV (bicuspid aortic valve). BAVs are genetic – several people in my family have or had them. They also are associated with connective tissue disorder. My brother has Marfans – another association with connective tissue disorder. I also had aortic regurgitation. To add to all of this I am fairly short and a bit underweight, and female.
In the Fall of 2019 I submitted my health and test records to the Cleveland Clinic (I'm originally from that area – my aunt had her heart surgery there). Cleveland Clinic called to say that I needed to have the surgery due to the combination of factors. We scheduled it for late February 2020.
I had the surgery and all went very well. I was very lucky – they repaired my valve (not replaced it). The aneurysm they replaced with a Dacron Graft. We drove home 9 days after surgery. It does take a while to recover – my husband was a wonderful caretaker. But I am so much better now.
I wish you well. If you can, go to the Mayo Clinic or the Cleveland Clinic. They are the best.

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@douglasebaker

Believe me, do not get the surgery, .you are fine. The surgery is as invasive as open heart surgery. My Aorta is 5.1 cm and my cardiologist will not be concerned until 5.5csm. However, I do have a ct scan check every year to monitor any changes, So far no changes. Furthermore, No one has any idea if this has been the size of my Aorta for years. I would take the yearly monitoring route and ease your worry.

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@douglasebaker – my husband has a doctor that does minimally invasive surgery, it is far much better for recovery. We checked out three (3) other doctors, and found one that does ONLY the minimal. I thought it would be worth the time to check out other cardiologist that doesn't do invasive. Life is so precious. I give you my best.

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@colleenyoung

Hi @ontogenyx, great question. I augmented the title of the discussion to reflect the question you'd like to ask regarding waiting for surgery until ascending aortic aneurysm is 5.0 and meanwhile having to limit an active lifestyle and control with drugs. Fellow members like @maryswims @ginko @twojunes2 @cobweb @degarden_girl @crhp194 @morninglory @dinis @sleepykat @azzurro1999 @pete398 and others have considered similar questions, and can provide doctor recommendations and their thoughts about decision making.

You might also be interested in reading their posts in this discussion:
* Ascending aortic aneurysm – repair/surgery https://connect.mayoclinic.org/discussion/ascending-aortic-aneurysm-repairaortic-valve-replacement-after-70

You mention that you're in good health and active. What types of activities do you wish to be able to continue and may have to tone down due to the aneurysm?

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Hi, my ascending thoracic AAA is 4.2 cm. My surgeon said he would consider surgery at 4.8 cm for my because I'm only 5'. Is this common for short people?

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@kanon

Hi. Just found this group. I was diagnosed with a 4.8 cm TAA in Feb. Because my sister was diagnosed with hypermobile Elhers Danlos Syndrome, a connective tissue disorder that can affect strength of arteries, I was sent for genetic testing. Step two of that testing begins on Thursday. My surgeon feels I may need the surgery sooner rather than later if I do have EDS as it puts me at higher risk for dissection. We’ll see if it has grown at all on next CT scheduled for May. I, too, want to just get this over with. Not sure what I’m really hoping for.

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I am scheduled for genetic testing in Dec. What does that involve. My dad had abdominal AAA and brother thoracic.

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@dixiemisty

Hi, my ascending thoracic AAA is 4.2 cm. My surgeon said he would consider surgery at 4.8 cm for my because I'm only 5'. Is this common for short people?

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In sept 2018 had HA found AAA to be 4.1 also bicuspid valve recommended surgery ASAP went to Mayo for 2nd opinion 6/21 AAA still 4.1 Mayo still says surgery needed but wait till it's worse.

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mine is 4.9 and they say wait because its safer to wait than having surgery. Its not fun waiting but surgery does not sound like f either.

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@dixiemisty

I am scheduled for genetic testing in Dec. What does that involve. My dad had abdominal AAA and brother thoracic.

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Hello @dixiemisty

I've had genetic testing done also, but not for aneurysms but for a rare type of endocrine cancer. For me, it involved a lengthy interview with a researcher regarding my family history and all related health matters of parents, grandparents, brothers, sisters, and children. In my case, they just did blood work and tested it for some genetic markers.

Unless they inform you otherwise, the only preparation you can do is to write down all of the family information you are aware of in terms of health problems.

I hope that you gain some helpful information from the testing. Will you post again and let me know how you are doing?

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@dixiemisty

I am scheduled for genetic testing in Dec. What does that involve. My dad had abdominal AAA and brother thoracic.

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Family history and bloodwork.

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