Why I Didn't Wait - The Statistics for Dissection

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I was painting inside my house last summer when I suddenly felt strange. I climbed off a short ladder, and realized my heart was pounding. I tried deep breathing, laying down and finally a cold shower. My heart was still going nuts and I could see it beating under my skin. Went to the ER where my heart rate was 220, and after a couple of days of tests, I was diagnosed with a 5.2 cm TAA. The cardiologist assigned to me in the hospital has a stellar reputation in the community, and he decided I should see him for followup in 4 months to remeasure the aneurysm. While in the hospital still, I googled the surgery I would require and found that while the hospital I was in had a "better than average" rating for aneurysm repair, the hospital where my sister works as a nurse had a "best rating".  I made an appointment to consult with the cardiologist at that hospital. A new CT scan was done and the measurement was updated to 5.3 cm.  He said he wanted me to return in three months. He told me I was a candidate for valve sparing surgery and that one of the other surgeons there would be the one to do my surgery.  I'd already read enough to know that for females, surgery is performed now more often performed when the aneurysm reaches 5.0 cm rather than the 5.5 c.m. measurement for male patients and I was so close! I made another appointment, with the guy who would actually be operating on me. I presented him with some studies, and he had actually co-authored one of the papers. He said I met another criteria for surgery, which was that my aneurysm was double the diameter of my aorta. I was moving out of state and there's a shortage of doctors in my new (small) town. I also didn't want to be crossing the desert and end up in an ER with an unknown surgeon on call when I'd done homework and found the best. He still felt that I was overly anxious, but agreed to schedule me. I had my surgery within a month, and I'm so glad I did! The anxiety was in the past and I had fairly easy recovery, out of the hospital on day five. 

I wanted to share the paper I read that brought about my decision not to wait.  When I read that 40% of the dissections occurred at diameters smaller than 5.0 cm, that cinched it for me. 

https://www.valleyheartandvascular.com/Thoracic-Aneurysm-Program/Risk-Stratification.aspx

And: Volume 116, Issue 10, September 2007, Pages 1120-1127

Aortic diameter =5.5 cm is not a good predictor of type A aortic dissection: Observations from the International Registry of Acute Aortic Dissection (IRAD)(Article)

Pape, L.A., Tsai, T.T., Isselbacher, E.M., Oh, J.K., O'Gara, P.T., Evangelista, A., Fattori, R., Meinhardt, G., Trimarchi, S., Bossone, E., Suzuki, T., Cooper, J.V., Froehlich, J.B., Nienaber, C.A., Eagle, K.A.

aUniversity of Massachusetts Medical School, Worcester, MA, United States

bUniversity of Michigan, Ann Arbor, MI, United States

cMassachusetts General Hospital, Boston, MA, United States

 Abstract

BACKGROUND - Studies of aortic aneurysm patients have shown that the risk of rupture increases with aortic size. However, few studies of acute aortic dissection patients and aortic size exist. We used data from our registry of acute aortic dissection patients to better understand the relationship between aortic diameter and type A dissection.

METHODS AND RESULTS - We examined 591 type A dissection patients enrolled in the International Registry of Acute Aortic Dissection between 1996 and 2005 (mean age, 60.8 years). Maximum aortic diameters averaged 5.3 cm; 349 (59%) patients had aortic diameters <5.5 cm and 229 (40%) patients had aortic diameters <5.0 cm. Independent predictors of dissection at smaller diameters (<5.5 cm) included a history of hypertension (odds ratio, 2.17; 95% confidence interval, 1.03 to 4.57; P=0.04), radiating pain (odds ratio, 2.08; 95% confidence interval, 1.08 to 4.0; P=0.03), and increasing age (odds ratio, 1.03; 95% confidence interval, 1.00 to 1.05; P=0.03). Marfan syndrome patients were more likely to dissect at larger diameters (odds ratio, 14.3; 95% confidence interval, 2.7 to 100; P=0.002). Mortality (27% of patients) was not related to aortic size.

CONCLUSIONS - The majority of patients with acute type A acute aortic dissection present with aortic diameters <5.5 cm and thus do not fall within current guidelines for elective aneurysm surgery. Methods other than size measurement of the ascending aorta are needed to identify patients at risk for dissection. © 2007 American Heart Association, Inc.

I was 58 when I had my surgery six months ago and I'm doing well! I had no complications. The scar is fading, and I have no limitations on what I can do. I do take blood pressure medicine and one to regulate my heart rate a bit. I need to lose weight still, but I'm working on that. My state of mind is so much better than it was before the surgery, and I can pick up my two-year-old granddaughter, which wasn't allowed prior to surgery. Life is great!

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  • Posted

    Thanks for sharing. Ascending or descending? What is valve sparing surgery? Is that the one easier than open heart? 

    Glad you are a success story!

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    • Posted

      It was ascending. Part of the arch was replaced as well.  The doctors believed that my valve would work properly once the aneurysm was repaired, hence the valve-sparing procedure.  I had open heart surgery, but my valve was not replaced. I do still have a murmur, and will be asking my cardiologist about it when I see him again. 
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  • Posted

    Sandy, thank you for sharing this info.  I am 63 and have an ascending TAA that measures 4.4 cm.  I try to keep up with new research regarding surgical requirements and this information helps.  I will use it to talk with my dr at my next appointment.  I'm so glad to hear that you are doing well.  It's always good to hear about positive outcomes from those who have had open heart surgeries.

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  • Posted

    Thanks so much for sharing your story, Sandi. I've read the same study, and discussed it with my cardiologist (he is a vascular specialist whose concentration is TAA and AAA). He indicated that the study was sound, but as with all medical research, it's only one study and needs to be replicated many, many times over before it can be taken as gospel (i.e. changing the current guidelines). He indicated everyone should have an individualized plan of care base on various risk factors. 

    For me, the current plan is to wait. I have a 47mm aortic root aneurysm. My cardiologist indicated the technology is advancing rapidly, and he estimates in 10-15 years, the TAA repair will be able to be done endovascularly (as opposed to open heart). So my hope is to wait for the technology to catch up to my anatomy. Once the EVAR surgery has been proven sound for TAA, I will bite the bullet.

    If it does go above 50mm in the next few years, like you I may elect to do the open heart surgery. It's taking a chance for sure, but so is doing open heart surgery. Life is all about weighing risks/taking chances. In the meantime, I will focus on what I can control: controlling weight/bp, balanced diet, moderate exercise, taking meds, etc. 

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    • Posted

      My surgeon has never lost a patient during elective aneurysm surgery, and when I told him how I’d be living in a rural area and would have to be helicoptered to Phoenix in event of a rupture and wouldn’t survive, he said I likely wouldn’t survive a rupture in his operating room either. I was having twinges of pain in my chest. Couldn’t pick up my little granddaughter.  Another study I read found that exercise and emotional upset are triggers for rupture. It was all just too much for me to live with. There’s no way I could have waited for 10-15 years, but that’s just me. 
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    • Posted

      Hi Sandi- I respect your decision. I'm sure it's a BIG relief to have this behind you and to be able to move on with the rest of your life w/peace of mind.

      The truly insidious part of this disease is the not knowing. Something could happen to me this afternoon, 10 years from now, or never. Many people are born, live their whole lives, and die at an advanced age never realizing they had this condition. I confess there are days when I want to call my doctor and schedule the surgery. A dissection/rupture has a low survivability rate, even in urban areas where they can get you to the hospital quickly. 

      I've consulted w/three doctors (2 cardiologists and a cardio thoracic surgeon who's ranked in the top 1% in his field). They all agreed that the best thing (for me) to do now is wait and monitor. So I've basically decided I'm going to put my faith in God, my medical team, and myself. 

      I am lucky to live in a fairly large city (Minneapolis) have 3 hospitals within 80 miles that are top notch in terms of doing TAA repair surgery (Mayo Clinic, Abbott Northwestern, University of Minnesota). If something were to happen, I'm minutes away from several hospitals. If I lived in a rural area, that might change the equation for me.

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  • Posted

    Sandy, can I ask where you had your surgery?
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    • Posted

      Hi Carol,

      I had my surgery with Dr Anthony Cafarelli at Hoag Hospital in Newport Beach, CA.  They have enrolled a large number of patients in an aortic aneurysm study group and do a lot of surgeries there. I chose the hospital due to their “Best” rating from US News & World Report for my particular procedure, plus my sister has worked at Hoag as a nurse for over 20 years. She knows the surgeons and would choose the same one if she needed this surgery. 

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  • Posted

    Thanks Sandy.  I live in southern Illinois and not close to any major medical facilities.  If and when I need the surgery I'm sure that I will have to travel in order to find quality care where the procedure is done regularly.  I'm always interested to hear where others have had a good experience.

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