gsl1956
Member
I received a dignosis 2 1/2 years ago of ascending aortic aneurysm, and have been under intensive surveillance for my ascending aortic aneurysm at Weill Cornell in NYC. I’’ve learned that when it comes to all things aortic aneurysm, it’s best to be treated and managed by doctors in an aortic center of excellence. It makes common sense that doctors who specialize in aortic disease or work at hospitals that have a high volume of aortic cases are more experienced in everything from the imaging of aortas down to the latest medical and surgical treatments.
My aneurysm was detected at 4.2 cm by echo in Feb. 2016, and because I was at Weill Cornell - one of the top aortic centers in the world - I had specialists who treat over a thousand patients a year with aortic disease. I have been under the care of one the top cardiothoracic surgeons in the world - Dr. Leonard Girardi who is Chief of Cardiothoracic Surgery at Weill Cornell. They perform over 300 ascending aortic aneurysm open repairs a year. He is on the cutting edge of the latest research on the medical and surgical management of the disease.
My aneurysm had eventually grown from 4.2 in 2016 to 4.6 cm in 2018 as confirmed in recent CT and MRI imaging. Dr. Girardi decided to operate on me electively as I had a family history of aortic aneurysm and sudden death due to aortic rupture. I underwent genetic testing for FTAAD in May 2017 and was diagnosed with a genetic variation of unknown significan of the COL3A1 gene - which is known to cause forms of vascular Ehlers-Danlos Syndrome. The finding of unknown significance was mainly due to the fact that I am the only patient at this time to have been registered for this particular variant and there is very little research about my variant to make a determination of its pathogenicity. In silico analysis states that this mutation most likely is damaging to proper protein synthesis. Recent research in vascular EDS is showing that there are actually 5 sub-types of the vascular form with significantly diverse expressions of disease characteristics and its severity - depending on the nature of the genetic mutation. Dr. Girardi was suspicious that it is pathogenic for connective tissue disorder. And because of family history and other factors, we felt the risk of early dissection or rupture was elevated.
Another factor was that aside from my aneurysm, I had not yet experienced any deterioration of my aortic valve and could thus preserve my valve using a David procedure. The ability to preserve the valve before matters get worse is a strong marker for intervention to avoid post-surgical complications and co-morbidities. And better long-term longevity and quality of life. Dr. Girardi has been performing thousands of valve-sparing open repairs of the ascending aorta over the past 15 years with a 0% mortality rate 30-day post-surgery. Yes, that’s ZERO!
i underwent surgery at Weill Cornell on August 7, 2018. Surgery was a complete success, I am now on the slow but steady road to recovery. And I am thankful that I’’ve been under the care of doctors and surgeons who understand this disease and are pioneering the evolution on how we diagnose and treat this disease. Many of the assumptions around aortic aneurysms are being rethought through ground-breaking research they perform. What was considered the gospel just 5-10 years ago about aneurysms is being revised. In fact, I am currently a research subject on two separate clinical research projects on aortic aneurysms at Weill Cornell. Paying it forward to help the cause.
One of research studies concerns 4D MRI flow analysis of the aorta. So I had a rigorous MRI study of my aorta a few weeks prior to my surgery that lasted 90 minutes with over 13,000 images. Unfortunately, in addition to my known ascending aneurysm, the study now shows 2 separate moderate enlargements of my descending aorta. The good news is we now know about them, which further confirms Dr. Girardi’s suspicions and his expectation of lifetime vigilance and surveillance over my vascular system.
After 3 weeks since surgery, my recovery is slow but steady - with the notable exception of persistent insomnia. This leaves me fatigued during the day and not as alert as I like. But my cardio said this not unusual for such surgeries - as surgical stress response can disrupt your slow-wave sleep phase and circadian rhythms. My cardio is hopeful this will be resolved by the next month of recovery.
I hope my story and thoughts will help others as you cope and manage similar conditions.
My aneurysm was detected at 4.2 cm by echo in Feb. 2016, and because I was at Weill Cornell - one of the top aortic centers in the world - I had specialists who treat over a thousand patients a year with aortic disease. I have been under the care of one the top cardiothoracic surgeons in the world - Dr. Leonard Girardi who is Chief of Cardiothoracic Surgery at Weill Cornell. They perform over 300 ascending aortic aneurysm open repairs a year. He is on the cutting edge of the latest research on the medical and surgical management of the disease.
My aneurysm had eventually grown from 4.2 in 2016 to 4.6 cm in 2018 as confirmed in recent CT and MRI imaging. Dr. Girardi decided to operate on me electively as I had a family history of aortic aneurysm and sudden death due to aortic rupture. I underwent genetic testing for FTAAD in May 2017 and was diagnosed with a genetic variation of unknown significan of the COL3A1 gene - which is known to cause forms of vascular Ehlers-Danlos Syndrome. The finding of unknown significance was mainly due to the fact that I am the only patient at this time to have been registered for this particular variant and there is very little research about my variant to make a determination of its pathogenicity. In silico analysis states that this mutation most likely is damaging to proper protein synthesis. Recent research in vascular EDS is showing that there are actually 5 sub-types of the vascular form with significantly diverse expressions of disease characteristics and its severity - depending on the nature of the genetic mutation. Dr. Girardi was suspicious that it is pathogenic for connective tissue disorder. And because of family history and other factors, we felt the risk of early dissection or rupture was elevated.
Another factor was that aside from my aneurysm, I had not yet experienced any deterioration of my aortic valve and could thus preserve my valve using a David procedure. The ability to preserve the valve before matters get worse is a strong marker for intervention to avoid post-surgical complications and co-morbidities. And better long-term longevity and quality of life. Dr. Girardi has been performing thousands of valve-sparing open repairs of the ascending aorta over the past 15 years with a 0% mortality rate 30-day post-surgery. Yes, that’s ZERO!
i underwent surgery at Weill Cornell on August 7, 2018. Surgery was a complete success, I am now on the slow but steady road to recovery. And I am thankful that I’’ve been under the care of doctors and surgeons who understand this disease and are pioneering the evolution on how we diagnose and treat this disease. Many of the assumptions around aortic aneurysms are being rethought through ground-breaking research they perform. What was considered the gospel just 5-10 years ago about aneurysms is being revised. In fact, I am currently a research subject on two separate clinical research projects on aortic aneurysms at Weill Cornell. Paying it forward to help the cause.
One of research studies concerns 4D MRI flow analysis of the aorta. So I had a rigorous MRI study of my aorta a few weeks prior to my surgery that lasted 90 minutes with over 13,000 images. Unfortunately, in addition to my known ascending aneurysm, the study now shows 2 separate moderate enlargements of my descending aorta. The good news is we now know about them, which further confirms Dr. Girardi’s suspicions and his expectation of lifetime vigilance and surveillance over my vascular system.
After 3 weeks since surgery, my recovery is slow but steady - with the notable exception of persistent insomnia. This leaves me fatigued during the day and not as alert as I like. But my cardio said this not unusual for such surgeries - as surgical stress response can disrupt your slow-wave sleep phase and circadian rhythms. My cardio is hopeful this will be resolved by the next month of recovery.
I hope my story and thoughts will help others as you cope and manage similar conditions.
