Dr. Otto, my cardiologist the U of W.
Dr. Otto, my cardiologist the U of W.
I just have been doing more research and trying to find out where/when I would get my aortic valve, aortic root and possibly my aortic arch replaced. I think I have found, in fact, I know that I found the guy. Dr. Luis Castro The Sequoia Hospital Heart & Vascular Institute in Redding CA. It’s not in my state of Washington, but, this guys got the reviews and reputation as an expert w/proven results. Here’s a video he did. Here’s another one too! “Understanding Heart Valve Replacement Choices: What you need to know.”
I am going to see about sending my latest echo to him and getting his advice. As well as sending it to Dr. Liang at Stanford. However, Dr. Castro has my vote.
I am trying to figure out why I am feeling kind of nauseous lately. I started my BP meds (100mgs of Metroprolol and Mycardias/HCTZ 80/25) and I swear I felt light headed the day of my echo as my BP got up to 200/77. I don’t know if an aortic valve (leaky biscuspid) has this light headiness feeling.
I know the stress of making a decision affects all of my family and my wife being a school teacher, she will need some time off. But… I also don’t know how soon I will need the surgery either. I need to get a “firm” answer from Dr. Castro and take it from there.
Moderate Aortic Enlargement and Bicuspid Aortic Valve are Associated with Aortic Dissection in Turner Syndrome: Report of the International Turner Syndrome Aortic Dissection Registry
Background—Girls and women with Turner syndrome are at risk for aortic dissection and rupture. However the size of the aorta and the clinical characteristics among those with Turner syndrome and dissection has received little attention.
Methods and Results—We obtained medical records from 20 individuals who voluntarily participated in the International Turner Syndrome Aortic Dissection (ITSAD) Registry. Type-A dissections occurred in 17/20 (85%) and type-B occurred in 3 cases where 1 occurred after coarctation stent placement. Of those with spontaneous aortic dissections, 18/19 (95%) had an associated cardiac malformation that included a bicuspid aortic valve. In one individual there was no predisposing finding other than having Turner syndrome. Associated pregnancy was documented in 1/19 (5%). More than half (13/19, 68%) came to medical attention > 24 hours after the onset of symptoms. For those with type-A dissections the mean ascending aortic size index (ASI-AAO) was 2.7 ± 0.6 cm/m2 (n=9).
Conclusions—Aortic dissection in TS occurs in young individuals at smaller aortic diameters than the general population or other forms of genetically triggered aortopathy. The absence of aortic valve or other cardiac malformations appears to markedly reduce the risk of aortic dissection However, aortic dissection can occur in TS without cardiac malformations or hypertension. TS individuals > 18 years with an ASI-AAO above 2.5 cm/m2 should be considered for an aortic operation to prevent aortic dissection.
***This is a Press Release that I found while searching Google this morning. I believe this is very great information and to again, bring awareness to this disease.
September is Thoracic Aortic Aneurysm and Dissection Awareness Month (TAADAM) 2005 Theme is “Share Your Life to Save a Life”
On September 20, 2004, Doug Grieshop died suddenly when his aorta ruptured in his chest. Doug never knew that he was among an estimated 6 million Americans (up to two per cent of the population) born with bicuspid aortic valve disease. Dougs death last September, the untimely death of John Ritter in September 2003, and the continuing lack of general awareness have inspired the Bicuspid Aortic Foundation to designate September as Thoracic Aortic Aneurysm and Dissection Awareness Month. The theme for 2005 is Share Your Life to Save a Life. This September, along with other families, the Grieshops are sharing their story. They know this is what Doug would want them to do.
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Laguna Niguel, CA (PRWEB) August 8, 2005
Chest pain, what are its life-threatening causes? The first time Doug Grieshop felt pain in his chest, it was severe enough to send this strong young man to the hospital one evening in June 2003. When testing ruled out a heart attack, Doug was sent home the next day with medicine for anxiety. Fifteen months later, Doug was half way up a ladder when he stopped and came back down. We will never know exactly what he felt in his chest then, because in those brief moments Doug did not speak. He collapsed when he reached the ground. Others rushed to help him, but there was no response. He was pronounced dead on September 20, 2004, the day after his 33rd birthday.
Was it a heart attack that took his life so suddenly? No, heart disease was not the reason for Dougs sudden death. It was a less well-known condition, thoracic aortic aneurysm disease.
What are thoracic aortic aneurysm and dissection (TAAD)? For many, aortic dissection was defined by the death of John Ritter, who lost his life due to dissection of his ascending aorta. Recently, Fred Hoiberg, with the Minnesota Timberwolves, and Ronny Turiaf, just signed by the LA Lakers, underwent surgery for aortic root aneurysms. These medical terms describe forms of aortic disease. When the walls of a section of blood vessel become weak and thin, it results in a bulging or ballooning of the vessel that is commonly called an aneurysm. Dissection is the tearing of a blood vessels inner lining, which allows blood to leak between the layers of the vessel wall. An aneurysm may tear (dissect) or completely rupture. Under certain conditions a blood vessel may dissect even when there is no aneurysm. When it is the aorta, the main artery leading away from the heart, this bulging and tearing are counted among the most serious, life-threatening conditions. However, the diseased aorta can be successfully treated, especially when found before an emergency occurs.
How many people die from aortic disease in the chest? There were 14,818 aorta-related deaths (including both the thoracic and abdominal aorta) reported by the US National Center for Health Statistics in 2002. However, there is a concern about accurately identifying causes of death involving the chest. Today, autopsies are rarely done in the United States. Without looking inside after death, it can be difficult to distinguish between a massive heart attack and aortic dissection or rupture in the chest. The same report lists 179,509 deaths due to acute myocardial infarction that year. Since relatively few autopsies are performed, it is possible that deaths due to TAAD may have been recorded as a heart attack. Many who have survived dissection or have thoracic aneurysms can identify other family members who died suddenly with chest pain assumed to be a heart attack. Was it a heart attack, or did the aorta in the chest tear or rupture? Without autopsies we cannot be sure, but aneurysms are often present in more than one member of a family.
The reason for Doug Grieshops death is known because an autopsy was performed. Doug died when his aorta completely ruptured in his chest. Right next to the rupture site, there was evidence of an old tear, one that probably happened in June 2003. The autopsy also revealed something else. Doug had been born with a congenital condition called bicuspid aortic valve disease. The aortic valve of his heart had only two leaflets when normally there are three. Those born with this abnormal valve are at risk of developing an aneurysm in their aorta, usually where it rises from their heart. Estimated to comprise up to 2 % of the population, those with bicuspid aortic valve disease represent a large group of people prone to aortic dissection or rupture.
Today, lives need not be lost to TAAD. Risk factors are known, and there are ways to look inside the chest. Using high-resolution, contrast-enhanced scans such as CT and MRI, the entire length of the aorta can be seen and the location of an aneurysm identified. There is medicine for blood pressure, easing the stress on aortic walls. And there is corrective surgery. Advancements in techniques have dramatically lowered the risk of surgery on the aorta when performed by skilled hands. Just over a decade ago, surgery on the thoracic aorta was delayed as long as possible due to its high risk. Today however, the mortality rate for thoracic aortic surgery has declined dramatically when done in expert aortic surgery centers. Surgery on the aorta is still the most complex surgical procedure in the chest. However, in non-emergency situations, highly skilled aortic surgeons perform surgery on the ascending aorta with a risk of mortality comparable to or even less than the national average for coronary artery bypass surgery. In a subset of patients, elective aortic surgery has been done without any mortality at all in expert hands. While excellent treatment options have been developed, when undetected and untreated, thoracic aortic aneurysm and dissection continue to pose a deadly threat. There is an extreme difference in outcome between treatment and the untreated natural progression of TAAD.
Four months after Dougs death, his daughter Olivia was born. She has an older brother Grant, still a toddler. Some day they will learn about bicuspid aortic valve disease and TAAD. They will learn how their lives were forever changed by what happened one day in September. And they will be able to tell others why an awareness month for Thoracic Aortic Aneurysm and Dissection is so important. This year, even though they do not understand, along with their Mom, Stacey, they are sharing their lives, in order to save lives.
With the objective of increasing public awareness, the Bicuspid Aortic Foundation has designated September as Thoracic Aortic Aneurysm and Dissection Awareness Month. This years theme, Share Your Life to Save a Life, focuses on sharing information and personal experiences with TAAD. On the Foundations web site, http://www.bicuspidfoundation.com, there is information about TAAD, as well as accounts of those affected by it, including Doug Grieshop and his family.
Bicsuspid Aortic Valve
Three Cusps (Normal) vs.
Two Cusps (Bicuspid)
Aortic Bicuspid Valve Symptoms And Treatment A bicuspid aortic valve occurs when the aortic valve does not fully develop while the baby is in the womb. That said, bicuspid aortic valves are one of the most common congenital heart defects affecting about 1-2% of all children.
What Is A Bicuspid Aortic Valve?
A bicuspid aortic valve is a heart condition that is due to a congenital deformity. A normal aortic valve has three cusps to manage the flow of blood through the heart. A bicuspid valve, however, only has only two cusps. As you can see in the diagram below, the bicuspid aortic valve has conjoined cusps. This can limit the flow of blood across the aortic heart valve.
The impact of a bicuspid aortic valve significantly varies from patient to patient. There can be severe aortic stenosis at birth. Or, aortic stenosis can also develop during childhood or during adulthood. Typically bicuspid aortic valve symptoms peak around the fourth decade of life. Aortic valve leakage (called aortic regurgitation or aortic insufficiency) is less common during early childhood but can also develop over time.
Symptoms Of Bicuspid Aortic Valves
Some of the most common heart valve symptoms (for bicuspid aortic valves and other heart valve defects) referenced by The Cleveland Clinic are:
Many patients with bicuspid aortic valves will require surgical treatment during their lifetime. Treatment may consist of heart valve repair or heart valve replacement.
My Story With A Defective Bicuspid Aortic Valve?
As a result of my bicuspid aortic valve, I suffered from both severe aortic stenosis and aortic regurgitation. Eight weeks after my diagnosis, I had aortic valve replacement surgery to replace my bicuspid aortic valve. Dr. Vaughn Starnes performed the surgery at USC Medical Center.
Great Article and informative!