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| Diseased aorta, including ascending aneurysm |
I will always be thankful that there are two controversial issues in aortic surgery that can never hurt my husband. (He has found enough complications on his own, without anything more!)
One of those controversies is when to have surgery!
It may surprise you that there is a great deal of debate among physicians about some things that are often said to patients with great confidence, as if there were no questions at all.
One of them is the size of the aorta that justifies surgery.
Two Men, Real Life
I will never forget Richard. He is close in age to my husband. His aortic aneurysm was close in size to my husband's too.
I held Richard's hand the very first time I met him. I held it to comfort him. He was a patient in ICU that day. He was a miracle to me then. He still is. Richard is a survivor of aortic dissection.
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| Richard Houchin (in blue) running again after surviving aortic dissection |
Why did one man's aorta tear,
and not the other?
Why did Richard's aorta tear,
nearly killing him,
and my husband's did not?
No one can answer that question.
nearly killing him,
and my husband's did not?
No one can answer that question.
Clearly, it was more than just the size
of the aneurysm.
of the aneurysm.
When to Have Aneurysm Surgery
When it was discovered, my husband's aneurysm was measured at 5.2 cm at the widest part. He had an echo first, than a CT, and also an MRI. How we hoped there had been some mistake, or that it would somehow shrink. There was no mistake. And aneurysms do not shrink.
We had read before we met Dr. Raissi that aortic surgery had been done at 6.0 cm historically, when the surgery was still quite risky. As the surgery became safer, it was being done at smaller sizes. Based on what we had read, we believed my husband's aneurysm qualified for surgery in properly skilled hands.
One of the papers I read at that time, from Mt. Sinai in New York, spoke about when and how aortic surgery should be done. The paper includes those born with BAV. I was very grateful for this paper, presented at the Aortic Surgery Symposium in 1998 and then published: Surgical treatment of the dilated ascending aorta: when and how? I remain truly grateful for Dr. Griepp and all the great work done at Mt. Sinai guided by his vision, skill, and compassion.
We were glad that when we found our way to Dr. Raissi, he did not hesitate to offer aneurysm surgery to my husband. Neither did he immediately rush him into the operating room. He did treat his blood pressure immediately, adding medications and adjusting dosage until it was well under control. During this time, we chose a surgery date. How was his surgery and recovery? Everything went perfectly. My husband's aorta remains in excellent condition, time tested and monitored for almost 14 years now! (His valve experience is a different story, which will be told later!)
Sadly, despite continued discussion over the years since my husband's surgery, today there remains a great deal of conflicting thinking about when an aortic aneurysm should be replaced in someone with BAV.
What's the Clinician to Do?
In a recent editorial in Current Opinion in Cardiology, Dr. Alan Braverman discusses the variations in recommendation in recent guidelines: Guidelines for management of bicuspid aortic valve aneurysms: what's the clinician to do?
Notice the differences in the guidelines in the chart.
Dr. Braverman writes: "I do not believe 'one size fits all' when it comes to decision making about the timing of aortic aneurysm surgery. One has to individualize management based on each patient's characteristics."
Yes! This is comprehensive, individualized care! This is what we need!
He further writes, "However, I am concerned that for some bicuspid aortic valve patients the strategy of observing the dilated aorta (greater than 5 cm) while waiting for the diameter to exceed 5.5 cm before recommending surgery will be associated with an unacceptable risk of aortic dissection."
However well meant, confident statements about waiting for surgery until a specific aneurysm size is reached, implying safety to the patient until then, may be followed by tragedy for some people. People who believed they were safe until the moment their aorta ripped inside them. These are the people exposed to unacceptable risk when told to wait for a certain size aneurysm to develop.
What about the risk of the surgery? To me, this is a moral issue. Complex aortic surgery will be safest in the most skilled hands. These are the hands I would want if I were to have this surgery.
The moral issue is that patients need to have surgery in those most skilled hands, but may not be helped to reach them.
I personally would not want to have my aorta tear while waiting for a larger size aneurysm because I may be injured or die from the surgery. I am being forced to wait because the surgeon may hurt me before the aneurysm will!
I would feel I am being asked to gamble, trying to have as many good, quality days of life as possible before one or the other ( the aneurysm or the surgeon) injures me or worse!
There are highly skilled aortic surgeons. I should be able to go to one of them. I should not have to gamble with my life.
Dr. Braverman concludes his article with: "In discussions with cardiologists and surgeons who have expertise in managing the aortopathy of bicuspid aortic valve disease, it is my impression that they will use many factors other than size alone to inform the decision as to when to go forward with aortic surgery. We all should!"
Well said, Dr. Braverman!
What's the Patient To Do?
This debate and uncertainty makes it very difficult for someone born with BAV who has an aneurysm. We are expecting trustworthy advice about when to have surgery that is based on solid knowledge, with the assurance nothing "bad" is going to happen to us until then.
After all, what is the point of knowing you have an aneurysm, living each day in the shadow of that knowledge, only to suffer injury or death from it?
We need to know what is known.
We need to know what is NOT known.
So, what is the patient to do? Find someone who will tell us everything.
Find someone who will tell us all about what is known about size. Tell us that the larger the aneurysm, the riskier it is. But tell us that smaller sizes are not safety guarantees! Tell us that some aneurysms tear at sizes smaller than 5.5 cm. My friend Richard certainly knows that! Tell us that some aneurysms tear at sizes smaller than 5.0 cm too!
And then tell us more.
Tell us, as Dr. Braverman describes, all the factors, the pros and cons, that apply to us as an individual.
Help us decide, thinking about many things and not just size alone, when to have surgery.
We need to find the hands that are expert in aortic surgery, with the best possible outcomes. Will someone tell us who they are? We are on the brink of greater transparency in medicine in the US. My hope is that will help us, the patients, search out the right hands.
We are the ones that live each day with an aneurysm in our chests. The risk is ultimately ours.
Please, tell us everything.
We can handle it.
We can handle it.
Just don't let us die
without the best possible chance
to win this aneurysm fight.
I believe this is what my husband has had.
I wish the same for everyone.
- Arlys Velebir
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