bicuspid aortic valve

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bird lady50

Hello all I have been dignosed as having a bicuspid heart valve and angina. I have aslo been told that it will get stiff in time or leak. I may have to have it replaced at some time. The cardilosit has not done any follow up appointments. I have been told that i need a heart scan once a year to check it. Do i arrange this from the g.p. Will i know if if gets worst stiff or leaks and will i know if i need it replaced will the be any syptoms. I am getting chest pains and out of breath when excerising now. The g.p say the angina is coming from the heart valve.. My blood pressure has gone up now has well . In the past week it has jumped from about 115/78 to any where from 140 /107 (last night) but now the lowest it has been is 126/97 I have a slight cold and bit of chesty cough but that should not make the blood pressure jump that high. Is the valve what is increasing the blood pressure. I would sooner have the valve replaced now while I am well enough to cope with the op. I am onm statians and a g.t n spray but my fat in the blood is not high as he put me on statins to help the heart. and does the g.tn spray realease the valve. thanks
 
Your Cardiologist should set all that up for you. My personal opinion is, you need to get a new Cardiologist. You have symptoms now that need to be investigated further. Don't ask me why, but they seem to blow womens complaints off. Not all of them, but some. We see it from time to time in here.

Not sure what gt n spray is, can you clarify? Whatever it is, no it's not going to release the valve. Nothing will short of surgery. As for the BP, that can be any number of things. Only your Doctor can figure that one out.

It's pretty early and most of the board is just getting up, so some others will post soon also.
 
g.nt spray

g.nt spray

a g.t.n spray is an angina spray Glyceryl trinitrate. Can I ask for another cardiolist. then I am worried because and dad deid early mum was 54 and dad was 56. Mum had two stokes and died of endcardatis and pulomanary odema I dont want to follow in mums and das footsteps . That is why i asked if if i would know when i need the op I would have if now i dont want the valve to get worst so that they cant replace it.
 
My best advice, not really knowing your current Cardio, get a new one that pays attention to your symptoms and orders some tests now. Be sure to get copies of any tests you have for your own records. At the minimum, they should at least do an Echocardiography study and see what the true condition is of your valve. Doing that may reveal enough info to go forward with full testing.

You may get as many opinions as you darn well want, but this particular Cardio doesn't seem to be interested in paying attention to you. Woops, your in England. I'm not sure how it works with your health care system. May have to wait until some others get in here.
 
Hi

Welcome. We have a bit of a similar situation with my husband. He has high blood pressure suddenly, shortness of breath with exertion, and chest pains. Our cardiologist did not feel that any of those symptoms were coming from his heart, as his blood pressure was too low, but yet very high, which I don?t understand and they never explained other than some people's blood pressure just runs high through life. They put him on a beta blocker, which slows down his heart, and I have to say has helped with the shortness of breath. We are not happy with the lack of concern from our cardiologist and confusing reports given to us and before we do as he suggested and go to a pulmonologist for an entirely different work-up we decided to take matters in our own hands and make an appointment with a cardiologist that specializes in congenital heart conditions for a second opinion regarding the heart being the main cause of concern. When this first started with him I thought a cardiologist was a cardiologist and now I have found out differently so if you are having these symptoms then take them seriously and find a different cardiologist that specalizes and understands congenital conditions to have the appropriate workup and someone who will take you seriously. All we had to do here was find and call a cardiologist, we did not need a referral from a GP but I am not sure how that works in England.

Best of luck to you.

Diana
 
bicuspid

bicuspid

what I cant understand is that my g.p says that the valve will get worse and it may need replacing at some point but no follow up from the cardloist. In my way of thinking it is best to repair it or replace it while I am fit enough to recover .
 
what I cant understand is that my g.p says that the valve will get worse and it may need replacing at some point but no follow up from the cardloist. In my way of thinking it is best to repair it or replace it while I am fit enough to recover .

I think that is a question that a lot of us have but it is kind of like replacing a light bulb before it burns completely out. There are a lot of risks to having surgery, and my first instinct was lets get this over with so we do not have this surgery hanging over our heads for the next 5+ years (as that is when he is predicted to need surgery by the latest report). Besides the initial risks of surgery there are new complications that arise just from having a mechanical/tissue valve as well that have to be considered. There is also the fact that there is no way for them to predict successfully when you will need surgery, when your valve will worsen to the point of needing the replacement, as some people with a bicuspid valve make it through their entire life without needing surgery at all. My cardiologist told us if it is not completely worn out, they do not like to fix it, trying to get the most wear out of it. My issue would be your symptoms. If you are having symptoms such as shortness of breath and chest pains related to your heart, then there is a lifestyle choice there to go through the next few years short of breath and limited in your ability, which is no way to live, or to get it fixed and get on with your life, unfortunately they don?t always see it that way. My advice is to start with a second opinion and go from there.
 
bicusip heart valve

bicusip heart valve

I wuold sooner have ity done now and get my life back. I cant cycle swim anymore the g.p has told not to do any stenous excersise. have i got to be like this untill they have to replace it. Not looking forward to that with drugs keeping me going
 
I don't blame you one bit. Did you get your statistics? Do you have stenosis? Sorry for all the questions but that is important. Generally speaking, and someone here may correct me, but just the bicuspid valve itself should not cause you not to be able to do any normal activities, but the bicuspid valve leads to other issues, such as stenosis, etc. which causes the heart to fail, aka your symptoms. Have you had an echo done?

Diana
 
biscupid heart valve

biscupid heart valve

No i dont think i have a echo done only an ex ray thats when they found out i have a biscuspid heart valve no staticts. I got told that I have a bicusip heart and angina and that i will need the valve replaced at some time
 
Hi there bird lady, welcome to the fray :D

This is just my opinion and I'm not a doctor, but I feel like you need an echo and maybe a stress test (maybe a nuclear stress test). The echo will check your valves and ventricles function along with other basic measurements. The stress test will rule out coronary artery disease as a cause of your chest pain.

Those are definitely a couple things I would be talking to the doctor about if I were you.
 
No i dont think i have a echo done only an ex ray thats when they found out i have a biscuspid heart valve no staticts. I got told that I have a bicusip heart and angina and that i will need the valve replaced at some time

An x-ray does not see the heart in movement, just the still shot of your valve. When you get to a cardiologist the first test they will do should be an echocardiogram in order to see how your heart works, if you are getting an adequate amount of blood pumped with each beat, etc. and then you can tell from there if you have additional problems related to your bicuspid valve. I do not have the studies, but I have seen many posted on here if you continue to read, but there are lots of people with a bicuspid valve that continue through life and never even know they have a bicuspid valve and they live a long and uneventful life, but then again there are others that do not. My advice would be to get in to see a cardiologist and see exactly what you are dealing with before you even begin worrying about surgery, as a bicuspid valve does not always mean surgery, but stenosis and regurgitation caused from a bicuspid valve does always require surgery at some point in time, the question is just when.

Also this forum is a bit slow with regards to getting some incite from different people's experience. If you post your questions under Heart Talk, I believe a lot more people will see your posts and be able to respond. Good luck.

Diana
 
Get thorough testing

Get thorough testing

I was diagnosed bicuspid in March 08, chest pain and SOB. I insisted on very thorough check-up including a cardiac MRI in which they found dilatation of my aorta. The transesophageal picked up a somewhat loose strand of aortic valve and now i take aspirin. The stress test picked up abnormal response to exercise so I wsa told only to walk and no more strenous exercise.

I suggest, if your insurance or personal means can cover it, to get a very thorough test.

I am also SOB and increasingly so since 3 weeks ago. I intend to be a pain in the rear end until my symptoms are heard and I did until that happened and I was tested. However, I also will listen in terms of when my cardiologist thinks I need surgery and I will check up at CCF every 12-18 months just to make sure the local cardiologists dont mess up too bad. I have found you sometimes have to be politely pushy and insistent.
 
As suggested above, an echo and stress test will be good tests to have to evaluate your bicuspid aortic valve and determine whether or not you may have angina from blocked coronary arteries or something else. If angina is ruled out as the source of your chest pain, aortic dilatation/aneurysm may explain your chest pain, and the echo test may show an enlarged ascending aorta (pain may be from stretching of the the aortic wall and pain recptors in the adventia layer). If necessary, a CT scan will determine the precise size of your aorta. Shortness of breath may be a result of aortic valve insufficiency. Get a good cardiologist!
 
thank you

thank you

I have been told that the valve is not working as well as it should They found i had a heart mumur with my first child. They told me it was nothing to worry about . All the info i have is that the g.p has told me that i have a bicuspid aortic valve and angnia and the valve will get stiff and worse and i will need it replaced but i dont know when . I would like to know what to look out for.
 
hi there birdlady50

hi there birdlady50

and welcome ! The news can be a bit shocking at first, I know my first thoughts after being told surgery was a possibility was panic and denial!

I am a Brit, but transplanted to Canada some time ago; I learned in 1985 I had a heart murmur, but it was very slight. Fortunately I have a good family doctor (sometimes called a primary care physician or PCP here in North America, and a GP in the UK). I got what I thought was bronchitis about 7 years ago, and went to ER (emergency) because I was not getting over it, and GP had given me antibiotics. SOB (shortness of breath), tired and just felt yucky. Well, that ER doc was right on the ball, recognised my murmur (I told him it was "really tough to hear" and he said he heard it as soon as he walked into the room!). He sent me for chest X-ray, bloodwork, and electrocardiogram (I still don't know if that is an EKG or not :confused:, where they put the leads on your chest and get that graph-thing of your heartbeat) and made an appointment for an echocardiogram in 36 hours!

well, the long and short of it was, I was referred to a cardio at that time, was told I would need surgery "sometime". I had a stenotic (narrowing) aortic valve, and had follow-up echos done every year, and last May was referred to a surgeon, had my valve replaced in September and I am fine, fine, fine. Surgeon is the one who discovered I had a bicuspid, I guess by the time my first echo was done that the valve had so much gunk growing on it and around it, that they could not see for sure.

Here, they are not too keen on doing the surgery unless they have to - the main criteria are a certain narrowing and/or symptoms and/or aneurism of the aorta itself. However, there is a relatively fine line between too early and too late, so follow-up is crucial.

I am now 53 years old, 10 months out of surgery and do not consider myself a "heart patient" or "high risk", I do however take precautions, such as MedicAlert bracelet, and telling people I am around a lot that I am on anti-coagulants. Life hasn't changed much, and for me, it hasn't really impacted my life and lifestyle any more than, say, diabetes, would.

Feel free to e-mail me or PM me if you want more info - although I am sure I have given more than enough here and you probably won't to ever see another post from me again :D

Take care, insist on follow-up, and be assured there is life (and a good one at that) once you get through this.


Jeanette
 
hello

hello

No i am not worried about an op . I have chest pains when walking the dog . and get sob. The cardilost still has not sent me for any follw up . All what i read aqbout bicusip valve is that i need it checked on a regluar bais If it does get to the point where an op is on the cards will the syptoms i have now be more sevrere I have not been told any info . funny it was 85 when they said i had a heart mumur . but they was uncorceed . . They found out i had a bicuspid valve in may this year
 

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