SYMPTOMS/Bicuspid Aortic Valve w/Stenosis

[jackie]

Hi All,

I just signed up after hearing about this website today from a lady at church.

My name is Jackie, Jacqueline, Jac...doesn't really matter. Formal, informal. I am 43 and am expecting surgery in about 2 years, depending on symptoms. I have a bicuspid aortic valve w/moderate stenosis that was diagnosed 1 year after I gave birth (6 1/2 years ago.) I'm at a 1.3 valve opening and 27 for my velocity. I can't remember my mean gradient. I was told 1.0 was critical for the valve and 40 for the velocity.

I was wondering if anyone WHO HAS THE SAME CONDITION could e-mail me back and let me know what symptoms they're experiencing. Or any info. on valve size, velocity . . .

My symptoms are:
? Dizziness (since I can remember-3 diff. kinds of dizziness)
? Numbness (at times)
? Puffy ankles (at times)
? Shortness of breath (usually when I'm carrying a heavy opject upstairs)
? Visual disturbances (my eyes give the sensation of crossing and I can't see clearly. Lasts usually less than 5 min.)
? Fatigue (at times)
? Bruising (I bump myself and there's another bruise)
? Poor circulation (I have leg cramping at night)

Well, that's about it. Any info. would be appreciated immensely!

Thanks so much.
God is so good.

Jackie

[email protected]

 

[Travler]

Welcome Jac:
I have been on this board for just a short time, but have found answers to so many of my questions. Do a lot of reading here and you will find out information that will help you relax and not be so anxious about what is going on with your health.
I have also found the people here to be so caring and that has meant a lot to me.
Ask your questions and concerns and the good people will do all they can to give you support.
God bless you
John

 

[wlaldridge]

Hi Jackie,

I just had my surgery 10 days ago. I was told in 1995 that I was at 1.0 cross sectional area and a preserved ejection fraction in the normal range. My gradient was 40mm hg. all in the range of mild stenosis.

In Feb 2002 my area was down to .7 , EF was 55% (low end of the normal range) and peak gradient up to 99mm hg (mean was 52mm hg).

In June I was down to .61 cross sectional area and the other stats were same as Feb. Never had any symptoms, had not developed any damage to the heart other than very slight enlargment of the left ventricle. Now, that opening can not continue to get smaller without the heart finally giving out or being seriously damaged. I could not wait any longer for symptoms to develop, my first might be my last considering the mode of failure for this disease.

The classic triad of symptoms that the docs look for are
1. SHORTNESS OF BREATH
2. Fainting or dizzy spells.
3. Angina Pectoris (pains in the chest)

One cardio said wait for symptoms and another said get surgery before damage or death are the result.

I was scared as h..l because in 1995 I did not take it seriously and that cardio said I "might" be a canidate in 15-20 years for valve replacement. I truely believe that I would have just died suddenly some day soon and that would have been it.

My stress test in 1995 was exercise for 16 minutes to a heart rate of 175 with no change in ekg or heart function.

I never had artery blockage often associated with valve deterioration. Everyone is different and you need the advice of your cardiologist he knows these things best and they will give you the best advice.

Good luck, This is the best place to get support. I am really new here but everyone has helped me get through this thing. You will too believe me. Come back often and ask all your questions everyone has some answer to help.

Best wishes,

Bill

 

[weekycat]

Welcome Jackie!!

Welcome Jackie!!

I would be the "lady from church" that you talked to this morning.

I'm so glad you joined. You'll find a lot of very caring, (and smart) people here who will welcome you with open arms and take you into our growing family.

Also, I'm here any time you want to talk. It's just that I haven't been through exactly what you're experiencing, and I'm sure that there are others here who have, and will be along to help.

You can also click on the "search" button at the top and look for any specific info that you need.

Let me know if there's anything I can do to help.

P.S. my email is: [email protected]

 

[JimL]

Welcome, Jackie -- and a fellow woodworker too!
I had congenital aortic stenosis, mild, bicuspid valve, up until last November. The only symptom I had ahead of time was shortness of breath. Tremendous shortness of breath. The result of my catheterization was that the valve was opening "a pinprick."
I encourage you to keep pursuing this with your cardiologist. I certainly wouldn't want to experience the symptom I had again.
If you look in the personal stories section, you'll see that aortic valve replacement is somewhat popular with this group.

 

[Nancy]

Hi Jackie-

You have found a marvelous website. You'll get lots of info. and support. Everyone here understands about heart valve type surgeries and much more than that.

It sounds as if you're in the watching mode and that's good. There's no real emergency and you have lots of time to educate yourself in all the aspects of your particular problems.

My husband is the patient here and he's been through mountains of serious things. As a group, the body of knowlege is vast and it's from those who've walked the walk.

So come on in often and ask lots of questions. You'll enjoy this special friendship.

 

[hensylee]

Hey, Jackie - welcome to VR - this is a great place for education about valve replacement. Every day the site grows bigger, meaning we have more experiences to draw from. You will find here all the support from here to yonder to help you through. God bless

 

[sylviayasgur]

hi jackie!
welcome to this site. it is the most wonderful, supportive place. everyone here is great , caring, sensitive and helpful.
my husband had his surgery a year ago and i don't remember him being very symptomatic until right before he had the surgery ( a few months before). he was running and biking till the end.
everyone, however, is different. i'm sure there will be others who come forward in time and will have had similar symptoms .
as nancy said, you are in the position now where you can monitor your condition and no change will go unnoticed.
good luck and please keep us posted and let us know how you're doing.
be well, sylvia

 

[Mara]

Hi Jackie
I had aortic stenosis from a bicuspid valve. Diagnosed when I was about 4 years old.
I had surgery last summer.
I can't remember all the numbers from my last chekc up when the cardio told me I needed surgery. Anyway, it probably doesn't matter, everyone is different.
My major symptom was fatigue. I was tired all the time and wanted to nap.

The surgeon told my family that the aortic valve was so stenotic that the leaflets did not function and the only opening for blood to get thru was the size of a pencil lead. He was surprised that I did not have more symptoms than I did. He was glad I had surgery when I did as the size of the valve opening was so small and the valve so stenotic that it might have stopped working and my heart would have decompressed.

Anyway, go with what your doc tells you is right for you. Everyone is different and some people can have more symptoms and others less and all need surgery.
Good Luck
Mara

 

[Paula (in Finland)]

I'm 40 years old and I also do have congenital aortic stenosis. You were asking about heart parameters. My AVA =valve area is 0,87 cm2. and I also know that my jet velocity is 4,5 m/s. (You don't use metric system, but perhaps you can change these values). The aortic valve pressure gradient (max) is 92 mmHg. My EF is 0.51 (EF 51 %). My heart is hypertroph 43/21. My RR=blood pressure is 120/80. My heart is not yet enlarged, it's in upper limit of its normal size.

Year ago I didn't have any back leak anywhere, but now I do have small leak in my aortic valve and also in my mitral valve. I have read that all other valves must be in faultless condition if you are the RP candidate, but perhas only extra pressure in my LV causes that mitral valve leak. My aortic valve is moderately calcified. I'll have my surgery on Dec. 17.

I thought that I don't have any symptoms, but when you listed yours I did realize that I also have shortness of breath when carrying a heavy objects upstaris (but don't everybody have?) and also have leg cramping sometimes and I can't sit on my heels, because of poor circulation and I also have headache and nose bleeding sometimes. Thus I'm not sure does these all come from my heart condition?

Paula

 

[John Cochran]

Greetings, Jackie, from a fellow Minnesotan. I had my bicuspid aortic valve replaced just last June. Frankly, I am very surprised that, with the symptoms you listed, that surgery is not being suggested now. However, doctors disagree often as to when surgery is indicated, although all that I talked to said that once symptoms develop, it is time.

Since my son also has had surgery on his aortic valve, we pretty much know all the hospitals here, and a number of the valve surgeons. Feel free to ask any questions you like, and we'll try hard to help you get answers.

Best to you,
John