Confused about diagnosis

[ccsgray]

Hi Everyone,
I was diagnosed with a bicuspid Aortic Valve in October 2001 after having attacks of chest pain which couldn't be explained. A stress echo was done by a cardiologist and it showed the bicuspid valve. He said he was surprised as I had such mild regurgitation. I was told to come back 'in a couple of years' to see how it was progressing.
After the initial shock and trying to get used to the idea, I found this forum and have been very grateful for the wonderful information from everyone.
When I was visiting my local doctor, I asked her if she could hear the valve regurgitation sound and she said she could. I guessed that in 1.5 years since diagnosis the condition of the valve would be worse.
Then, I was referred to a Physician in the same Hospital as the cardiologist for another matter. He took my medical history including the valve problem and then examined me thoroughly. He listened to my heart from all angles and the big surprise was that he said he couldn't hear any sound from my heart valve at all! He was going to get in touch with the cardiologist to discuss things!
Has anyone heard of valves improving? I really don't understand this. I am 52 this year and was expecting my valve to be considerably worse.
I would be grateful for any ideas...
Regards,
Sue

 

[LUVMyBirman]

Welcome to the group.

From what I have learned though experience. It may take a very long time for progression from a mild state to the top. In some cases..... you may remain stable on a permanent basis.

Diagnosis on myself was at age 8. Surgery at 30. My family was told that I would go though life trouble free. We now know there is no way to predict the how progression will continue.
(23) years is a long time to be trouble free from the point of diagnosis! Feel fortunate to have had all of that time to grow as a child and adult. Some of us do not have the luxury. It's all in God's hands.

Wishing you all the best.

 

[ccsgray]

Hi Gina,

Thanks for your welcome and reply, and thanks for putting it in perspective. You're right, I do feel thankful that I haven't had any major problems from the valve and at my age I would expect some signs of wear and tear to show. Only occasionally do I worry about what's going on.

I guess it is best to stay as healthy as possible, with diet etc. and try and forget the valve. As you say there is no way to predict how the progression will continue...

Kind Regards,

Sue

 

[BillCobit]

Stethoscope exams

Stethoscope exams

Hi Sue

I am aware that hearing and distinguishing heart murmurs depends on technique and experience of the examiner...placement of the stethoscope, discernment of the sounds, etc. So I'm not too surprised to read your post and see that the cardiologist heard something the other doc did not.

If you've had your bicuspid valve confirmed on echo, I suspect the second physician lacks the proper examination technique.

I don't believe a valve ever gets better, but I have leared that the rate of deterioration varies in different people, with some never reaching the point that requires surgery. So the best thing you can do is continue to get regular checkups by the cardio.

Regards,
Bill

 

[Nancy]

Hi Sue-

If you haven't had a recent echocardiogram, please request it (strongly).

That will give you some peace of mind. If it shows something, then ask if a TEE could be done as a more definitive test.

It's important to have things confirmed scientifically. Hearing sound is much more subjective than the tests would be, but they are also subject to the experince of the technician, just not as much. Also sounds can be muffled by many things.

Best wishes to you.

 

[epstns]

I'll second Bill's comment that some doc's hear murmurs, some don't. Last year I had my annual physical and all was well. Then just 4 months later I went to a different doc for another reason and he heard a grade III murmur, advised me to "have it evaluated." Long story shortened, I found I have aortic stenosis, probable bicuspid valve, and we're watching it to see what develops. So far, so good -- no symptoms.

One item of note that I found in research was the notion that valve problems related to bicuspid valves often progress at a slower rate than valve dysfunctions caused by rheumatic heart disease or simple aging.

Hope you're in that "slow cook" group. (Hope I'm there, too!)

 

[bvdr]

Hi Sue,

Welcome to this forum. Don't be surprized at all that medical personnel differ as to what they hear. Murmurs are sometimes very difficult to pick up. They also change depending on blood pressure, pulse rate, placement of the stethescope and position of the patient.

A thorough cardiac exam takes time. You have to listen to several areas on the chest and really tune in. Sometimes while reading some websites that say that valve problems can be diagnosed and their severity estimated simply by ascultation I am amazed! Sometimes a sound is so loud that no-one could miss it but that is truly a rarity. Also sometimes, one sound can mask another.

I would strongly suggest that everytime you always request a copy of your medical and test results and keep them in a personal file. No-one will keep better track of you than you.
It will also give you good reference points when doing your research.

Again, welcome to this forum. I hope you find it to be as wonderful of a place that many of us do.

Betty(Bvdr)

 

[fyrfytr]

Hi Sue,
Welcome to the site. You are with a lot of good and very helping people. I had my bicuspid valve detected when I was 6 and other than a lot of catheterizations over the years, I didn't have any problems until this year and I am 52. Like everyone else has said the medical personnel will differ depending on there level of training. Take care and Good Luck.

Dave
_______________________________________
Surgery:4/21/03
Aortic Aneurysm Repair
Aortic Valve Replacement with a St. Jude with a graft sleeve.
Poudre Valley Hospital, Heart Center of the Rockies

 

[ccsgray]

Good morning everyone,

Thank you so much for your replies... I really appreciate ALL the advice.

Tomorrow I am seeing the doctor again (who couldn't hear the valve) and will ask him to have another listen. It will be interesting to hear what the cardiologist said to him, (if he contacted him like he said he would).

I will make an appointment to have another stress echo done in the near future and see if anything has changed. Nancy, I haven't had a TEE yet, but it looks like it may be necessary if it shows the valve more clearly. I feel a bit sheepish when I think back to the ultrasound picture on the screen and me happily agreeing with the doctor that "Yes I can see the two leaves in my valve!", not knowing that this wasn't a 'normal' abnormality.

Once again, thanks for your wisdom... I learn so much every time I visit this forum.

Kind regards,

Sue

 

[rcatalano]

I also had a bicuspid aortic valve. Didn't find out about it until a Navy flight physical when I was 22 yrs old. I had already passed 2 earlier flight physicals without it being detected. The flight surgeon had me doing push ups and jumping jacks, it was the only way he could hear the murmur.

When he sent me to the cardiologist, they used me as a training dummy. All the cardiologists in the clinic had to listen to my murmur. I never should have gotten into the Navy with it.

They told me it may never amount to anything, but I did require surgery about 9 years later. But I never had the information available on this site. It would have been a big help back then.

Good Luck - Rob

 

[ALCapshaw2]

Welcome Sue,

My recommendation would be for a checkup (echocardiogram) at least once a year and *anytime* you begin to experience 'symptoms' such as shortness of breath or being noticably more tired than normal, especially after exertion.

Once symptoms begin, your heart 'may' compensate, but it will have to 'work harder' and this can lead to PERMANENT damage to the heart muscle. Better to have surgery sooner than later IMHO. I know the Cardiologists like to medicate to postpone surgery as long as possible but the surgeons prefer to get you while you are in better condition. I 'almost' went too long in getting my surgery. I vote with the surgeons on this matter.

'AL'

 

[ccsgray]

Hi Rob and Al,

Thank you for the advice. I saw the physician again on Thursday and he once again said he couldn't hear the valve. He told me to stop worrying about it and that "Most people with these valves go to their grave without having problems with them." He also said that "this is a trivial problem." Hmm.

I realise it is up to me to keep a check on my health and that's what I'll be doing from now on. To change the subject a bit... I went to this physician, (referred by my doctor) for diagnosis of a butterfly rash on my face, severe joint pain which comes and goes, attacks of double vision, headaches, extreme fatique and and other symptoms. His diagnosis? Depression. I was fuming (and aching all over). I politely but firmly told him I didn't agree with his diagnosis AT ALL, and left. It cost me $325 for the two visits (which DID make me depressed!).

Regards,

Sue

 

[Georgia]

Check old posts

Check old posts

Hi, Sue - a month or two ago there were multiple posts about rheumatic (as in arthritis) symptoms that a lot of valvers have had. Look in older posts; seemed to many folks that it appears to be quite common.

Suggest you see a rheumatologist - blood work should tell if you have certain types of arthritis (or related-type diseases).