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25 with bicuspid aortic valve with leakage and stenosis
25 year old male here. I found out about two months ago that i had a bicuspid aortic valve with a little leakage and so stenosis. I was a little shocked at the time and didnt know anything about the disease to know what questions to ask. My cardiologist just told me not to lift heavy weights and to go to the ER if i had a fever for more than ten hours. She said she didnt want to see me again until next year for a CT scan to look for an aneurysm. Ive been doing some research and have a lot of questions and am worried.
What is the prognosis for someone that already has regurgitation and stenosis at my age? How quickly can the stenosis or regurgitation worsen? Why would she wait six months to look for an aneurysm if it is something that could kill me? How quickly can aneurysms develop? Im tempted to demand we do the CT scan now. She also didnt mention anything to me about aneurysm and dissection possibility in my neck and head. Im a little freaked out here. She didnt really tell me anything and now im just left knowing about all of these horrible things that could happen to me.
What is the prognosis for someone that already has regurgitation and stenosis at my age? How quickly can the stenosis or regurgitation worsen? Why would she wait six months to look for an aneurysm if it is something that could kill me? How quickly can aneurysms develop? Im tempted to demand we do the CT scan now. She also didnt mention anything to me about aneurysm and dissection possibility in my neck and head. Im a little freaked out here. She didnt really tell me anything and now im just left knowing about all of these horrible things that could happen to me.
Im also 25 with a Unicuspid valve/Aortic stenosis. My parents found out when I was two weeks old, but Ive spent most of my life asymptomatic and my heart grew with me. It wasnt until 2 years ago that I was upgraded to moderate, and have had to watch it a bit more. I get out of breath quicker than I used to, and I too worry about the possibility of an aneurysm and dissection of the valve. I think the worst part about it is that im active and want to be able to keep up with peers like I could in HS and college, but have found that I just have limits. I suggest you learn these limits quickly and always be open with your doctor.
Ok, so no regurgitation and no stenosis is good. That he agreed there is some slight calcification of the aortic valve is, I assume, what justifies having you come back yearly for a re-check. It sounds like there is potential for stenosis to develop in coming years. As I said initially, these things don't usually get to the point that anything has to be done about it until a person is in his 30's, 40's of 50's, if ever.
Some of the things this cardiologist told you are new information to me, and I'm grateful to learn, such as the fact that the systolic thickening of the ventricles is normal.
Some of what he told you is old information to me, and I agree with it, such as the fact that trivial regurgitation is common and not a problem.
Some of what he told you, I disagree with, and I think I'm on firm ground, such as when he said your echocardiogram is good enough to show any aneurysm that might be associated with your BAV. (He did think it was bicuspid, after all?) In fact, there are some aneurysms of the aorta that develop beyond the "range" of what a transthoracic echocardiogram can reveal. For instance, if you have an aneurysm of the ascending and/or transverse aorta but not of the aortic root, the type of echo you had will not catch that. A transthoracic echocardiogram, in the hands of a good tech, should be able to reveal the size of the aortic root and perhaps a bit of the ascending aorta. If an aneurysm develops beyond that point, it will take some other kind of imaging to reveal it. It's like this: if you take a chest x-ray, it won't reveal whether you have a broken foot. Same thing with a transthoracic echocardiogram -- whatever is beyond the range of where the probe goes, won't be visualized. I believe the most common of the BAV-related thoracic aneurysms do involve the root, though, so I guess that is where this doctor is coming from.
If I were you, I believe I might just let all of this sit until next year. In the meantime, I invite you to be looking for a cardiologist who specializes in aortic valve disease. If you can't find anyone who specializes in that -- because they're rare -- look for someone who specializes in either heart valve disease or adult congenital heart disease. A fellowship in echocardiography is a plus. An interest in BAV (or Marfans, since there are similarities) is an extreme plus. Someone who is highly educated about BAV is probably going to want to do a CT or MRI scan of your chest, to rule out a thoracic aneurysm and get a baseline measurement of the aorta.
I looked at your profile, and you live near Dallas TX. There should be somebody in the Dallas area who fits the bill. I recommend you spend the next six to nine months looking for that person, and then when it is three months prior to your scheduled follow-up appointment, you can call that person's office and make an appointment. Finding someone with specialized knowledge of aortic valve disease to be your permanent cardiologist will make a huge difference in your care. Even if you have to drive farther to see that doctor, I would do it. You should be able to take your doctor's word as gospel and not have to check up on what he says.
Also, visit the website of the Bicuspid Aortic Foundation, if you have not already found it. That is a good place for information about all kinds of aortic disease, aortic valve disease, and thoracic aortic aneurysms.
Good luck.
Some of the things this cardiologist told you are new information to me, and I'm grateful to learn, such as the fact that the systolic thickening of the ventricles is normal.
Some of what he told you is old information to me, and I agree with it, such as the fact that trivial regurgitation is common and not a problem.
Some of what he told you, I disagree with, and I think I'm on firm ground, such as when he said your echocardiogram is good enough to show any aneurysm that might be associated with your BAV. (He did think it was bicuspid, after all?) In fact, there are some aneurysms of the aorta that develop beyond the "range" of what a transthoracic echocardiogram can reveal. For instance, if you have an aneurysm of the ascending and/or transverse aorta but not of the aortic root, the type of echo you had will not catch that. A transthoracic echocardiogram, in the hands of a good tech, should be able to reveal the size of the aortic root and perhaps a bit of the ascending aorta. If an aneurysm develops beyond that point, it will take some other kind of imaging to reveal it. It's like this: if you take a chest x-ray, it won't reveal whether you have a broken foot. Same thing with a transthoracic echocardiogram -- whatever is beyond the range of where the probe goes, won't be visualized. I believe the most common of the BAV-related thoracic aneurysms do involve the root, though, so I guess that is where this doctor is coming from.
If I were you, I believe I might just let all of this sit until next year. In the meantime, I invite you to be looking for a cardiologist who specializes in aortic valve disease. If you can't find anyone who specializes in that -- because they're rare -- look for someone who specializes in either heart valve disease or adult congenital heart disease. A fellowship in echocardiography is a plus. An interest in BAV (or Marfans, since there are similarities) is an extreme plus. Someone who is highly educated about BAV is probably going to want to do a CT or MRI scan of your chest, to rule out a thoracic aneurysm and get a baseline measurement of the aorta.
I looked at your profile, and you live near Dallas TX. There should be somebody in the Dallas area who fits the bill. I recommend you spend the next six to nine months looking for that person, and then when it is three months prior to your scheduled follow-up appointment, you can call that person's office and make an appointment. Finding someone with specialized knowledge of aortic valve disease to be your permanent cardiologist will make a huge difference in your care. Even if you have to drive farther to see that doctor, I would do it. You should be able to take your doctor's word as gospel and not have to check up on what he says.
Also, visit the website of the Bicuspid Aortic Foundation, if you have not already found it. That is a good place for information about all kinds of aortic disease, aortic valve disease, and thoracic aortic aneurysms.
Good luck.
So, got a second opinion. The new cardiologist was confused by my previous cardio's conclusions because the test didn't show any stenosis or regurgitation. He said pretty much everyone has trace regurgitation with the tricuspid valve. The sinus arrhythmia is a normal change in heart rate when inhaling and exhaling. Thickening of left ventricular segments is normal when the heart pumps. If there was an lack of thickening, it would indicate a weak heart. The only abnormality is the slight calcification and the bicuspid valve, which he confirmed I probably do have. Though he did offer to do another echo, I declined since there didn't seem to be a point. I inquired about any restrictions I might have since I have a BAV. He said there were none. He said I can do any kind of exercise I might normally do, including weight lifting. He said either the valve was going to crap out one day or it wasn't and there was nothing I could do to help or hurt the situation. He basically told me to go about my normal life and he'd let me know if/when I needed surgery. He also said an echocardiogram was good enough to show any aneurysm that might be related to/caused by my BAV. I asked him about any relationship between BAV and an increased risk for neck/brain aneurysm. He flat out dismissed the notion saying that they just don't see it.
Basically, he told me I have the most mild case possible and will likely never have any problems because of it. So, I should live normally, but get yearly checks just in case.
Basically, he told me I have the most mild case possible and will likely never have any problems because of it. So, I should live normally, but get yearly checks just in case.
Thanks for taking the time to respond. I am going to a new cardiologist today with lots of questions. Hopefully he'll be more open to discussion than my last one. I'll update with any new information/clarifications that might be helpful to anyone who stumbles upon this.
Yeah. I was diagnosed about two months ago with a bicuspid aortic valve. My cardiologist didn't explain anything to me at the time. She just told me to watch for infections and sent me out the door. I scheduled another appointment with her to ask more questions. She just told me not to worry and sent me on my way. So, I'm not going back to her anymore. I have an appointment with a new cardiologist today who will hopefully answer all of my questions. From what I understand, thickening and calcification are not the same thing. Calcification is a build up of calcium on the valves usually caused by abnormal blood flow. It is fairly common with BAV. Thickening occurs when your heart has been working harder, which I believe could be caused by a myriad of things. Hope you get some clarification. If you can afford it and feel the need, I would suggest meeting with your cardiologist again to go over everything.
I'm no expert on reading these reports. I can kind of skim the surface of them, but there are other members here who I would depend on much more. With that caveat, I'll dive in with what little I can contribute.
On the holter, sinus rhythm would have been good, and sinus arrhythmia is less good. Whether the arrhythmia is simply less good or perhaps is verging into bad depends on the exact character of the arrhythmia. Somewhere on there, the report may give a more specific impression.
On the transthoracic echo report, regarding the description of the AV, you're right, it doesn't sound like they're sure it's bicuspid, but then again, I don't think it's usual for a 25 year-old's aortic valve to be even slightly calcified. An eccentric jet isn't necessarily normal, either, but I don't know how much that, in itself, is actually going to affect you. I don't know if the velocity means anything, as a number in isolation. The valve gradient is more meaningful. You might see if the aortic valve gradient is on there, anywhere.
It sounds to me like there may, in fact, be an issue with the aortic valve, but it also sounds to me like whatever is going on is fairly early in the process. There might be some mild stenosis or the beginnings of stenosis. I believe the systolic thickening of the LV wall that is mentioned in the stress echo report is consistent with stenosis. That happens when the heart is starting to have to work hard to force blood through a smaller than normal AV.
Your resting EF is 60%, which is fine. That's the percentage of blood in the left ventricle that is being propelled into the aorta on every heartbeat. The normal range for that is usually stated as 50% to 70%, but 70% is actually kind of high, unless you are a competitive athlete who trains for cardiovascular performance and endurance. 60% is right in the middle and nothing to find fault with. I don't know how to interpret the post-exercise EF of 76%; I don't know if that's normal or high. I've never had any kind of stress test, myself.
It sounds to me like you have something going on that you're going to have to have watched. The AV is not regurgitating, but it may be starting to get stenotic. You should definitely ask your doctor if that's accurate, and if not, ask him to explain to you what is going on and ask him to break it down for you into simple terms.
As I say, I'm no kind of medical professional. The only reason I'm even venturing out onto a limb here is because I know what it's like to have no clue what the doctors think, and even a small clue is sometimes helpful to one's peace of mind.
You can find interpretative info about all of the test findings on reference sites on the internet, and I'm hoping that another forum member may chime in here, also, but it's best to ask your own doc to explain what he or she thinks. If I've helped you to frame some questions for your doctor, then I'm happy, and that's really all you should take my answer for.
On the holter, sinus rhythm would have been good, and sinus arrhythmia is less good. Whether the arrhythmia is simply less good or perhaps is verging into bad depends on the exact character of the arrhythmia. Somewhere on there, the report may give a more specific impression.
On the transthoracic echo report, regarding the description of the AV, you're right, it doesn't sound like they're sure it's bicuspid, but then again, I don't think it's usual for a 25 year-old's aortic valve to be even slightly calcified. An eccentric jet isn't necessarily normal, either, but I don't know how much that, in itself, is actually going to affect you. I don't know if the velocity means anything, as a number in isolation. The valve gradient is more meaningful. You might see if the aortic valve gradient is on there, anywhere.
It sounds to me like there may, in fact, be an issue with the aortic valve, but it also sounds to me like whatever is going on is fairly early in the process. There might be some mild stenosis or the beginnings of stenosis. I believe the systolic thickening of the LV wall that is mentioned in the stress echo report is consistent with stenosis. That happens when the heart is starting to have to work hard to force blood through a smaller than normal AV.
Your resting EF is 60%, which is fine. That's the percentage of blood in the left ventricle that is being propelled into the aorta on every heartbeat. The normal range for that is usually stated as 50% to 70%, but 70% is actually kind of high, unless you are a competitive athlete who trains for cardiovascular performance and endurance. 60% is right in the middle and nothing to find fault with. I don't know how to interpret the post-exercise EF of 76%; I don't know if that's normal or high. I've never had any kind of stress test, myself.
It sounds to me like you have something going on that you're going to have to have watched. The AV is not regurgitating, but it may be starting to get stenotic. You should definitely ask your doctor if that's accurate, and if not, ask him to explain to you what is going on and ask him to break it down for you into simple terms.
As I say, I'm no kind of medical professional. The only reason I'm even venturing out onto a limb here is because I know what it's like to have no clue what the doctors think, and even a small clue is sometimes helpful to one's peace of mind.
You can find interpretative info about all of the test findings on reference sites on the internet, and I'm hoping that another forum member may chime in here, also, but it's best to ask your own doc to explain what he or she thinks. If I've helped you to frame some questions for your doctor, then I'm happy, and that's really all you should take my answer for.
Hello :)
Ive just started a new thread to see if anyone can shed some light on my echo as well lol. I see it says your Aortic valve is slightly calcified mine says it has mild thickening and Ive been doing research to see if this is the same thing.
Its so hard not to google but when you want answers its hard not too lol
Ive just started a new thread to see if anyone can shed some light on my echo as well lol. I see it says your Aortic valve is slightly calcified mine says it has mild thickening and Ive been doing research to see if this is the same thing.
Its so hard not to google but when you want answers its hard not too lol
You certainly don't have to reply to this, you've helped me so much already, but I finally got my medical report from the cardiologist. I was wondering if you could give me your impression of the findings.
**Holter Report**
Predominant Rhythm was Sinus With Sinus Arrhythmia
Heart Rate Max 119
Heart Rate Min 46
Average 82
**Transthoracic Echocardiographic Study Report**
Study Quality: fair
Aortic Valve: Individual leaflets were poorly visualized. Possible bicuspid valve with eccentric AR. Valve is slightly calcified. There is no evidence of regurgitation. Peak aortic velocity is 2.2 m/s
Tricuspid Valve: Tricuspid valve is structurally normal. There is no evidence of stenosis. There is trace regurgitation. Right ventricular systolic pressure is 19 mmHg.
**Stress Echocardiographic Study Report**
Pre-Exercise EKG: Sinus rhythm with non specific ST changes
Exercise EKG: No significant ST changes compared to baseline
EKG Summary: Normal
Rest Echo Study Findings: Resting ejection fraction is 60%. Normal wall motion and systolic thickening of all left ventricular segments. No resting wall motion abnormalities noted.
Immediate post-exercise echo study findings: Increased wall motion and systolic thickening of all left ventricular segments with decrease in end-systolic dimensions. (Visual estimate) No immediate post exercise abnormalities noted. EF 76%
Impression: Negative stress EKG and Echo for provokable ischemia
Everything looks pretty mild to me. Though I don't know what the sinus stuff is referring to. And it doesn't even look like they are sure I have a BAV.
**Holter Report**
Predominant Rhythm was Sinus With Sinus Arrhythmia
Heart Rate Max 119
Heart Rate Min 46
Average 82
**Transthoracic Echocardiographic Study Report**
Study Quality: fair
Aortic Valve: Individual leaflets were poorly visualized. Possible bicuspid valve with eccentric AR. Valve is slightly calcified. There is no evidence of regurgitation. Peak aortic velocity is 2.2 m/s
Tricuspid Valve: Tricuspid valve is structurally normal. There is no evidence of stenosis. There is trace regurgitation. Right ventricular systolic pressure is 19 mmHg.
**Stress Echocardiographic Study Report**
Pre-Exercise EKG: Sinus rhythm with non specific ST changes
Exercise EKG: No significant ST changes compared to baseline
EKG Summary: Normal
Rest Echo Study Findings: Resting ejection fraction is 60%. Normal wall motion and systolic thickening of all left ventricular segments. No resting wall motion abnormalities noted.
Immediate post-exercise echo study findings: Increased wall motion and systolic thickening of all left ventricular segments with decrease in end-systolic dimensions. (Visual estimate) No immediate post exercise abnormalities noted. EF 76%
Impression: Negative stress EKG and Echo for provokable ischemia
Everything looks pretty mild to me. Though I don't know what the sinus stuff is referring to. And it doesn't even look like they are sure I have a BAV.
Sorry, I don't know what kind of scan you need to have to screen for brain aneurysms. People who have a BAV do have elevated risk for brain aneurysms, compared to the general population. It wouldn't be a bad idea to have your brain checked, at some point. I think that's an area of concern that you have ample time to deal with, though.
There is an aneurysm forum on this same medhelp.org site, and there are a couple of people in that community who seem knowledgeable about the screening and diagnostic procedures for brain aneurysms. You could post there and see what kind of response you get. Sometimes I post on the aneurysm forum, but only about thoracic aneurysms.
If you're having neck and head pain both, that doesn't sound like an aneurysm to me, FWIW. There are a lot of different types of neckache/headache combos that are not at all life-threatening, and they're common. Neck pain has a tendency to spread to your head, and head pain has a tendency to spread to your neck. You could be having anything from muscle tension headaches, to migraines, to whatever. You're a little young to have arthritis in your neck, but I guess anything is possible. Headaches are common beyond measure, and brain aneurysms are pretty rare, so the odds are with you on that one.
Obviously, the best place to get a good answer to your question about how to rule out a brain aneurysm would be from a knowledgeable physician. I hope you come across someone soon who can answer that to your satisfaction.
There is an aneurysm forum on this same medhelp.org site, and there are a couple of people in that community who seem knowledgeable about the screening and diagnostic procedures for brain aneurysms. You could post there and see what kind of response you get. Sometimes I post on the aneurysm forum, but only about thoracic aneurysms.
If you're having neck and head pain both, that doesn't sound like an aneurysm to me, FWIW. There are a lot of different types of neckache/headache combos that are not at all life-threatening, and they're common. Neck pain has a tendency to spread to your head, and head pain has a tendency to spread to your neck. You could be having anything from muscle tension headaches, to migraines, to whatever. You're a little young to have arthritis in your neck, but I guess anything is possible. Headaches are common beyond measure, and brain aneurysms are pretty rare, so the odds are with you on that one.
Obviously, the best place to get a good answer to your question about how to rule out a brain aneurysm would be from a knowledgeable physician. I hope you come across someone soon who can answer that to your satisfaction.
I had a slightly off topic question. Im a little concerned about brain aneurysms. I did have a regular MRI a few months ago. Can a regular MRI without dye detect an aneurysm? Ive been having a lot of neck and localized head pain for a few weeks now.
I'm not a medical professional. I would call myself medically literate. I work as a mental health professional and have to be familiar enough with medicine to be able to read clients' medical records and to be able to talk with them about their medical conditions if necessary. Mainly what I know about BAV, though, is from having it. I was diagnosed at age 49 (ten years ago). I already had an aneurysm and needed surgery for both aneurysm repair and valve replacement, at the time I was diagnosed. There was no time for a lot of thoughtful deliberation or self-education. I had a failed first surgery and, a year later, a successful re-op. I post on these forums to try to help people be more knowledgeable than I was when I had to start making treatment decisions. At the time of my re-operation, someone knowledgeable helped me, or I wouldn't be here. I try to pass it on, as best I can. Post back anytime you want. You will have more questions, I guarantee you. A very valuable source of information is the Bicuspid Aortic Foundation. They have a website. That's who helped save my life.
Thanks a lot. I mean it. So far, you've given me more than anyone else has. I didn't know the risk of dissection was related to the size/dilation of the aorta. That was the information I was looking for. I wanted to know if there was a way to predict it. I know BAV runs in my family, but, as far as I know, no other genetic disorders that would cause aneurysm or dissection do.Pretty much all of the heart problems in my family are caused by diabetes, obesity, etc. I sometimes wish I hadn't found out about my BAV so I wouldn't worry. But I know I'm lucky I found out now so that I can at least try to prevent serious complications. I've already changed up my diet to a heart healthy one, have started taking vitamins for heart health like Garliq, grape seed extract, omega-3, etc., have cut down on the drinking and swore off cigars and pretty much every stimulant. Again, thanks for taking the time to explain things to me. It honestly means a lot and goes a long way towards giving me peace of mind. Out of curiosity, are you a medical professional or just have a lot of experience with such conditions?
Hello,
Thank you for your response. I do have stenosis. Though i couldnt tell you exactly how bad it is. I know the leakage is clinically insignificant, if i remeber right. I dont have a heart murmer or anything. The fact that i have a BAC was actually an incidental finding. I didnt have any symptoms. My PCP actually refered me to another cardiologist today since he didnt like my current one's lack of attention to me. I walked out of the office the day i was diagnosed not knowing anything about my disorder. I had to look up everything on the Internet. All of which as just a list of things that now might kill me. Happy day for someone that had never really contemplated death. This new one is supposed to be top notch and very thorough when it comes to educating her patients. A part of me hopes that the new cardiologist will come in with a smiling face and tell me i was misdiagnosed so i can get back to being a carefree youth.
I did have a question about aortic dissections. I know aneurysms can be monitored to see how large they are, how fast they are growing, and when they might rupture so that such an inevitability might be avoided. Is there any such way to track the possible development of an aortic dissection? Or is that just one of those things you have to cross your fingers and pray never happens?
Im sort of OK with the possibility of having one or more valve surgeries in my life. My PCP told me all about how much advancement has happened in only 5 years. And i know that aneurysms can be caught in plenty of time before they rupture in most cases. It is just the whole aortic dissection thing that freaks me out. I havent been able to find anything about screening for them. Ive actually been having a horrible pain in my upper back between my left shoulder blade and spine. Im fairly certain it is a muscle or nerve. But, in the back of my mind, i wonder if i might be about to drop dead at any moment. I actually went to the ER today because the pain got so intense i threw up. They ran a few blood test (i dont know what. They didnt tell me) and did a chest xray. The doctor's diagnosis? Muscle spasm. He said he wasnt going to do any further testing because i was too young. Yes, i told him i have a BAV. He told me that didnt mean anything. I told my parents to sue the mess out of him if i happen to drop dead from an aneurysm or dissection anytime soon.
Thank you for your response. I do have stenosis. Though i couldnt tell you exactly how bad it is. I know the leakage is clinically insignificant, if i remeber right. I dont have a heart murmer or anything. The fact that i have a BAC was actually an incidental finding. I didnt have any symptoms. My PCP actually refered me to another cardiologist today since he didnt like my current one's lack of attention to me. I walked out of the office the day i was diagnosed not knowing anything about my disorder. I had to look up everything on the Internet. All of which as just a list of things that now might kill me. Happy day for someone that had never really contemplated death. This new one is supposed to be top notch and very thorough when it comes to educating her patients. A part of me hopes that the new cardiologist will come in with a smiling face and tell me i was misdiagnosed so i can get back to being a carefree youth.
I did have a question about aortic dissections. I know aneurysms can be monitored to see how large they are, how fast they are growing, and when they might rupture so that such an inevitability might be avoided. Is there any such way to track the possible development of an aortic dissection? Or is that just one of those things you have to cross your fingers and pray never happens?
Im sort of OK with the possibility of having one or more valve surgeries in my life. My PCP told me all about how much advancement has happened in only 5 years. And i know that aneurysms can be caught in plenty of time before they rupture in most cases. It is just the whole aortic dissection thing that freaks me out. I havent been able to find anything about screening for them. Ive actually been having a horrible pain in my upper back between my left shoulder blade and spine. Im fairly certain it is a muscle or nerve. But, in the back of my mind, i wonder if i might be about to drop dead at any moment. I actually went to the ER today because the pain got so intense i threw up. They ran a few blood test (i dont know what. They didnt tell me) and did a chest xray. The doctor's diagnosis? Muscle spasm. He said he wasnt going to do any further testing because i was too young. Yes, i told him i have a BAV. He told me that didnt mean anything. I told my parents to sue the mess out of him if i happen to drop dead from an aneurysm or dissection anytime soon.
Let's take your points one by one.
1. You say you have "a little leakage and so stenosis." I'm not sure if the "so" is a typo. At first, I read it that way, thinking that you meant "no" stenosis, but then later in your post, you speak as if you do have stenosis. If you're clear whether you do or do not have stenosis, post back and let us know, please. If you're not clear on that point, then sometime you'll want to find out. Just because you have regurgitation does not mean that you have stenosis or that you necessarily ever will have stenosis. If you don't have a copy of the echo report, you might want to go ahead and get that. Then you'll know what the doctor's interpretation was.
2. Aortic regurgitation can be classified as trace, mild, moderate, moderate-to-severe, or severe. Since you say that you have "a little" regurgitation, I take it that yours is either trace or mild. If it's trace regurgitation, that's not even clinically significant. It means that, while you do have a bicuspid aortic valve, the valve is still functional. It your regurgitation is mild, it suggests that you are still at an early place in the progression of your aortic valve disease.
3. Aortic stenosis, if you do have stenosis, is usually spoken about in terms of the valve gradient and the area of the effective valve orifice. The valve gradient is the difference in pressure on the two sides of the valve. When you have an aortic valve that is reduced in size, it is like putting a nozzle on a hose, and the pressure of the jet that comes out is different than the pressure going in. The difference in pressure measurements on the two sides of the valve is the pressure gradient. For perfect ("normal") valves, the pressure gradient is low -- usually single digits, and usually pretty close to zero. The higher the pressure gradient, the more dysfunctional the valve is inferred to be. The effective valve orifice is the measurement, in square centimeters, of the area of the valve that is still open to blood flow and not occluded by calcium deposits. The usual means by which adults get aortic stenosis is that calcium deposits form on the valve. Sometimes babies are born with aortic stenosis that is not calcified, but adults with aortic stenosis almost always have calcium deposits on the valve.
4. The occurrence of aortic aneurysm, especially root/ascending aortic aneurysm, is higher in BAV individuals than it is in the general population, but it's not a certainty that you are ever going to have an aneurysm. Yes, you should be checked, and I'm not really certain what the doctor's reasoning is for postponing the CT until next year, but you're probably NOWHERE near dying from a dissection or rupture of your aorta. The complications of a BAV, such as an aneurysm or severe regurgitation, do not usually progress to the point of requiring intervention until the person reaches middle age. There are exceptions to everything, but if you are going to need surgery at all, it will probably not be until your 30's, 40's, or maybe even your 50's.
5. The cardiologist gave you good advice not to lift heavy weights. You shouldn't be doing anything that induces a Valsalva maneuver (google it). In other words, don't be lifting anything heavy enough to cause you to strain, grunt, or hold your breath. The amount of weight allowed will be different for everyone, but I have seen advice for males, even fit males, not to lift over 50 lb. Of course, if you happen to be not very fit, and 50lb. is a strain, then you shouldn't even be lifting 50 lb.
6. As for putting off the CT scan, the doctor may have used very good reasoning, but at the same time, I think your question about that is legitimate, so it never hurts to ask. It might be something as simple as an insurance issue, combined with what she estimates as very low risk. The echocardiogram gives you the aortic root diameter, and most aneurysms that are associated with a BAV will cause the root to be enlarged, so if she saw a normal root size, then she may simply not have to wanted you to get started on a series of expensive, high-radiation-dosage CT scans any sooner than you need to. If she had access to a chest x-ray, she may also have been able to see that the ascending aorta was not greatly enlarged, and that was good enough to go by for the next few months.
7. I know it's hard not to freak out when you get news like this. I know, because I've been there. But try not to. Odds are overwhelming that you have many years to educate yourself about this issue before you have to use your knowledge to make any treatment decisions. Good luck.
1. You say you have "a little leakage and so stenosis." I'm not sure if the "so" is a typo. At first, I read it that way, thinking that you meant "no" stenosis, but then later in your post, you speak as if you do have stenosis. If you're clear whether you do or do not have stenosis, post back and let us know, please. If you're not clear on that point, then sometime you'll want to find out. Just because you have regurgitation does not mean that you have stenosis or that you necessarily ever will have stenosis. If you don't have a copy of the echo report, you might want to go ahead and get that. Then you'll know what the doctor's interpretation was.
2. Aortic regurgitation can be classified as trace, mild, moderate, moderate-to-severe, or severe. Since you say that you have "a little" regurgitation, I take it that yours is either trace or mild. If it's trace regurgitation, that's not even clinically significant. It means that, while you do have a bicuspid aortic valve, the valve is still functional. It your regurgitation is mild, it suggests that you are still at an early place in the progression of your aortic valve disease.
3. Aortic stenosis, if you do have stenosis, is usually spoken about in terms of the valve gradient and the area of the effective valve orifice. The valve gradient is the difference in pressure on the two sides of the valve. When you have an aortic valve that is reduced in size, it is like putting a nozzle on a hose, and the pressure of the jet that comes out is different than the pressure going in. The difference in pressure measurements on the two sides of the valve is the pressure gradient. For perfect ("normal") valves, the pressure gradient is low -- usually single digits, and usually pretty close to zero. The higher the pressure gradient, the more dysfunctional the valve is inferred to be. The effective valve orifice is the measurement, in square centimeters, of the area of the valve that is still open to blood flow and not occluded by calcium deposits. The usual means by which adults get aortic stenosis is that calcium deposits form on the valve. Sometimes babies are born with aortic stenosis that is not calcified, but adults with aortic stenosis almost always have calcium deposits on the valve.
4. The occurrence of aortic aneurysm, especially root/ascending aortic aneurysm, is higher in BAV individuals than it is in the general population, but it's not a certainty that you are ever going to have an aneurysm. Yes, you should be checked, and I'm not really certain what the doctor's reasoning is for postponing the CT until next year, but you're probably NOWHERE near dying from a dissection or rupture of your aorta. The complications of a BAV, such as an aneurysm or severe regurgitation, do not usually progress to the point of requiring intervention until the person reaches middle age. There are exceptions to everything, but if you are going to need surgery at all, it will probably not be until your 30's, 40's, or maybe even your 50's.
5. The cardiologist gave you good advice not to lift heavy weights. You shouldn't be doing anything that induces a Valsalva maneuver (google it). In other words, don't be lifting anything heavy enough to cause you to strain, grunt, or hold your breath. The amount of weight allowed will be different for everyone, but I have seen advice for males, even fit males, not to lift over 50 lb. Of course, if you happen to be not very fit, and 50lb. is a strain, then you shouldn't even be lifting 50 lb.
6. As for putting off the CT scan, the doctor may have used very good reasoning, but at the same time, I think your question about that is legitimate, so it never hurts to ask. It might be something as simple as an insurance issue, combined with what she estimates as very low risk. The echocardiogram gives you the aortic root diameter, and most aneurysms that are associated with a BAV will cause the root to be enlarged, so if she saw a normal root size, then she may simply not have to wanted you to get started on a series of expensive, high-radiation-dosage CT scans any sooner than you need to. If she had access to a chest x-ray, she may also have been able to see that the ascending aorta was not greatly enlarged, and that was good enough to go by for the next few months.
7. I know it's hard not to freak out when you get news like this. I know, because I've been there. But try not to. Odds are overwhelming that you have many years to educate yourself about this issue before you have to use your knowledge to make any treatment decisions. Good luck.
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FYI, when it comes to aortic catastrophe, dissection is actually more common than outright rupture. For a dissection to happen in the absence of an enlarged aorta, though is vanishingly rare. When it does happen, there is usually a family history of connective tissue disease, aortic disease, heart valve disease, sudden death from unexplained causes, or death at an unusually young age from cardiovascular causes. If those things have not happened in your family, that is another point in your favor.
Even surgeons who are highly educated about BAV generally won't treat any aneurysm that is less than 4.5 cm in diameter. It's the size of the aorta that needs to be monitored. Unless you have an aneurysm that is 4.5 cm or larger, the risk of surgery is greater than the risk of doing nothing. As long as your aorta is smaller than that, your odds of sudden death from aortic disease are no greater than your odds of being killed by accidentally walking in front of a bus.
A simple chest x-ray should show whether your thoracic aorta is enlarged to the extent of 4.5 cm or larger. There won't be an exact measurement, but a radiologist can see whether the aorta is enlarged, which is good enough for right now. Get the radiologist's report of the chest x-ray that you had in the ER. If the report doesn't say anything about aortic enlargement, dilation, dilatation, or ectasis, you should be in the clear to wait until after the first of the year for a baseline CT.
If, after checking the radiologist's report of your chest x-ray, you're still too anxious to wait, though, I don't see why it would be a big deal to do the CT now, rather than in a few months. (That's why I was saying to ask the first cardiologist what her reasoning was.) Your first CT is the baseline measurement that is used to track any future changes.
Confronting your mortality is hard, especially at age 25. Everyone has to do it, though. Your time to face it just came earlier than most of your peers'. Listen to me now. BAV is very treatable. This is not any kind of death sentence. You probably won't need to even do anything about it for a long time -- if ever. There are worse things to have. Everyone has to die someday, and you will, too. So that's a reality. But your death is no closer now than it was before you found out about this thing. Think about that for a minute. And perhaps your death is actually farther off, now that you do know about it. Think about that, too.