New with questions...

[Karen7]

Hi Everybody,

My name is Karen and although I just registered, I have been surfing this site for about a month and feel like I know many of you.

My first question is -- are all moderate AR & aneurysms asymptomatic? I am tired (not sleepy but weak) dizzy, have swollen hands & feet and my whole body throbs with heartbeat -- my neck, my fingertips...

I had a TEE today and my bicuspid aortic valve is only moderately leaky and there is a 42 mm aneurysm distal to the sinotubular ridge. All the docs seem to agree that these numbers probably aren't symptomatic and it's too soon for surgery. Because there has been noticeable growth since April, I am supposed to return for an echo every three months. Next question - why? What am I waiting for? Impressive numbers? Heart damage? What are the benefits of living like this for awhile longer? This does not resolve on it's own, does it?

I talked to a surgeon and he said I am "entitled to fatigue." Thanks. I have seven kids and I hear a lot of that. Any thoughts, any input, any coping tips would be greatly appreciated. I am 5' 1" and 110 lbs. All my cardiac measurements are extremely low except for the aortic root and the left ventricle which is 51 mm. Normal for the general population but large for me.

Thanks in advance,
Karen

 

[Karlynn]

Hi Karen and welcome!

I am not an AVR person, but an MVR, so my knowledge is very limited. I'm sure others will be along that do know something to weight in. I would suggest that swollen hands and feet are not a part of general parental fatigue, but symptom of your valve disease, or another issue.

You are your best healthcare advocate, so if you feel like your complaints are being too easily dismissed, go doctor shopping.

 

[Debrinha GT]

Hi frrom Brazil

Hi frrom Brazil

Hi Karen and welcome to the site. I don't really have any answers to your question, but I just wanted to introduce myself. I'm a fourty year-old Brazilian who has already had three mitral valve replacements as a result of rheumatic fever. I'm now in line for my fourth which will be within the next couple of years. You've come to the right place and I'm sure others will come forward with some answers to you. Take care and stay in touch.
Débora

 

[ALCapshaw2]

My first question is -- are all moderate AR & aneurysms asymptomatic? I am tired (not sleepy but weak) dizzy, have swollen hands & feet and my whole body throbs with heartbeat -- my neck, my fingertips...

I had a TEE today and my bicuspid aortic valve is only moderately leaky and there is a 42 mm aneurysm distal to the sinotubular ridge. All the docs seem to agree that these numbers probably aren't symptomatic and it's too soon for surgery. Because there has been noticeable growth since April, I am supposed to return for an echo every three months. Next question - why? What am I waiting for? Impressive numbers? Heart damage? What are the benefits of living like this for awhile longer? This does not resolve on it's own, does it?

I talked to a surgeon and he said I am "entitled to fatigue." Thanks. I have seven kids and I hear a lot of that. Any thoughts, any input, any coping tips would be greatly appreciated. I am 5' 1" and 110 lbs. All my cardiac measurements are extremely low except for the aortic root and the left ventricle which is 51 mm. Normal for the general population but large for me.

Karen

GOOD Questions Karen !

If you don't have copies of ALL of your test results, I highly recommend that you obtain them. Then chart them by measurement on a spread sheet of data sheet.

Watch for CHANGES. As you already pointed out, your numbers may be 'normal' for most folks but because of your small size they may be more 'significant'. This is where CHANGES may be more important than 'bsolutes'.

Cardiologists typically seem to like to 'wait and see' while Surgeons like to operate before there is any permanent damage to your heart muscles or walls.

This is the time to be interviewing surgeons who have experience with your issues, find one you are comfortable with, and let HIM make the call as to when to operate.

'BE PREPARED' (as the Boy Scouts like to say)

'AL Capshaw'

 

[PJmomrunner]

Hi Karen:

You can see where my head is in responding to your post by looking at my signature. (I am also very tired at the moment from non-stop packing and preparing for a three-week trip with two teens!)

Without giving it a ton of thought, I'd say I'm glad they are watching you every three months. My questions (as a 5' 10" woman) run along the lines of whether the threshold for surgery for a diminutive person such as yourself should be the same as for the general population. I would presume that the normal diameter of your aorta is among the smallest in the spectrum. I wonder how the diameter of your descending aorta compares to your ascending (I believe there is a formula based on descending diameter and BSA for determining the expected normal diameter of the ascending).

Also, you don't mention blood pressure. I hope it is being monitored closely and that you are on medication to keep it very low.

I wonder if Arlyss can shed any light? Dr. Raissi, who she works with, has a 4.5cm criteria for operating on ascending aneurysms associated with bicuspid valves. Measurement is crutial. Who's measuring your aneurysm? A surgeon or radiologist who works with a surgeon who specializes in aortas and operates on hundreds a year? Or a radiologist who may or may not be measuring correctly and reporting to a cardiologist who may or may not be looking at the film/DVD as well? (I ask because I've been given measurements that vary greatly and have found that the only measurements I can feel comfortable with are from the experienced surgeons.)

For me the key to coping is in learning as much as I can so that I can judge who to trust, and then trusting them. And sometimes I don't cope so well, because for every general rule or standard criteria I seem to come across, I seem to meet someone on VR who is an exception! Good luck, Karen. Welcome to VR and the "waiting room."

 

[Karen7]

Nice to meet you

Nice to meet you

Thanks, Karlynn,

It's nice to meet you and to talk with someone who has a heart condition. We put that Jeremiah quote on our wedding programs. I love it.

I know you're right about the doctor shopping. How I it though... I dislike trying to persuade a stranger that I don't suffer from anxiety or some exorbitant need for attention. The first doctor I saw for tachycardia prescribed xanax!

Thanks for posting.

Karen

 

[Karen7]

Wowee

Wowee

Hi Debora,

It's nice to talk to you.

THREE mitral valves, wow. My mitral valve is insufficient but I believe it would resolve if my aortic were replaced. Originally, I was told I had had "undiagnosed" rheumatic fever as a child. Now I know that I have a congenital bicuspid valve and my mother did not just "miss" rheumatic fever.

Karen

 

[Karen7]

Great Idea!

Great Idea!

Hi Al,

Great idea about the spreadsheet! I never would have thought of that although I'm always trying to organize the information in my mind...

I am going to try and get all those tests in hard copy for myself.

A friend who is a vascular surgeon told us that women's veins are generally smaller than men's and that body size is also a factor. That's why the "normal" values are so broad.

Thanks for the great idea.

Karen

 

[Karen7]

Have a wonderful vacation

Have a wonderful vacation

Hi PJ,

Thanks for the warm welcome.

Radiologists have been doing the measurements. If 4.5 is the threshhold, then you are just about ready, aren't you?

I'm just thinking that if everything else on me is small, why would my aortic root be large? But the echo results say "mild dilation" even though other measurements are the very low end of normal.

I take Toprol 100 and my pressure is in the upper normal range usually. No one seems worried about it so I don't either. This seems like a great site to learn all the ins and outs.

I hope you have a wonderful trip. Thanks for responding to my post.

Karen

 

[Karen7]

Thanks!

Thanks!

Hi David,

Thanks for the great website!

That throbbing thing is the worst. Very difficult to fall asleep, isn't it? Sometimes I feel like someone's jumping on the bed!

How will they fix your arch?

I cannot imagine working 100 hours a week in addition to having a family. God bless you. I hope your symptoms resolve soon. That gives me some perspective -- thanks.
Karen

 

[Karlynn]

I dislike trying to persuade a stranger that I don't suffer from anxiety or some exorbitant need for attention. The first doctor I saw for tachycardia prescribed xanax!

Don't you just love it! I had a doctor prescribe Valium for my arrhythmia. Some doctors just can't wrap their minds around women younger than 65 having heart issues. So when we complain of symptoms, it's either all in our heads, or our lives are just too busy.

 

[Georgia]

Girls, I was in the hospital (having been sent in with bp 195/135 and sob) and my pcp ordered some ativan to see if those "nerves" of mine were causing the symptoms (this being the same goof who missed/ignored the cardiac symptoms for at least 3 years). Yup, us ladies sure have a lot of mental problems!!!!

 

[Mary]

Girls, I was in the hospital (having been sent in with bp 195/135 and sob) and my pcp ordered some ativan to see if those "nerves" of mine were causing the symptoms (this being the same goof who missed/ignored the cardiac symptoms for at least 3 years). Yup, us ladies sure have a lot of mental problems!!!!

I understand completely. I was in the 8th month of pregnancy when I started having nonstop PVC's. I went to the ER and I was admitted to the telemetry floor where they recorded hundreds upon hundreds of arrhythmias. When the cardio on call viewed the tape, he assured me they were benign and I was just upset and hormonal due to my pregnancy.

If that wasn't bad enough, the OB said, "We could put you on medicine but that would kill the fetus; decide what you want to do."
What an a--! I kept him as the doctor until I had my C-section, then I immediately had my records transferred and switched back to my FCP.

And they wonder why women are reluctant to go to the hospital with chest discomfort?

 

[coryp]

Hi Karen,
I started dealing with very similar problems several months ago (the heart throbbing through my body was the one that got me started with posting). My Dr told me that they were unrelated to my heart. I have a BAV with severe regurg, ascending aorta at 4.4cm (44mm) arch at 4.5cm and left ventricular hypertrophy. It is frustrating when you can't find a reason for the way you are feeling especially when the dr's tell you nothing is wrong and then go through this long list of stuff that's wrong with your heart and tell you that surgery is coming soon. My coworkers, business partners and wife all tell me I look exhausted and half the time I wish I could lay down and take a nap 1 hour after getting up. I only have 2 kids so less strain there but I work a full time job and I am also the co-founder and CTO of a UK based company so I work about 80 to 100 hours a week.

This website (there are many others with similar content) has most of what your dealing with listed, when I pointed this out to my cardio she just dismissed it.
http://www.tmc.edu/thi/vaortic.html

Your not alone in either what you are experiencing with the doctor or symptoms. I have found some relief taking an anti-inflammatory so mine may have been related to a muscular issue like the doctor suggested, but it hasn't resolved everything.

Others more knowledgable than I will chime in.

David,

WHat did your Cardio tell you the issue was with the constant heart beat through your body? Does it happen when sitting, laying or all of the above?

Can you hear the beating in your ears? Does your pulse go up as well or just the strong beats with regular pulse?

thx

 

[perkicar]

Girls, I was in the hospital (having been sent in with bp 195/135 and sob) and my pcp ordered some ativan to see if those "nerves" of mine were causing the symptoms (this being the same goof who missed/ignored the cardiac symptoms for at least 3 years). Yup, us ladies sure have a lot of mental problems!!!!

When I was readmitted for my pericardial effusion, the first morning I was there I became anxious, a little dizzy, felt like I couldn't get my breath, and I was in a very odd rhythm on the monitor (I think it was atrial bigeminy, because the beats were sinus, not one sinus and one PVC). The nurse (who is general was very good) also asked me if I though I was having a panic attack. H***, I thought I was going to code, I felt that strange. Yes, I'd have to say I was pretty darn anxious!! My vital signs looked OK, except for my funky rhythm. The Cardiology fellow later told me that with that rhythm and rate, I was perfusing which would explain my anxiety and SOB.

I did take a xanax and the rhythm did resolve on it's own, but not before scaring me pretty good. Important nursing lesson learned--always listen to your patient when they say they feel "strange". Especially when you know they are not the type to exaggerate.

 

[Karen7]

Girls, I was in the hospital (having been sent in with bp 195/135 and sob) and my pcp ordered some ativan to see if those "nerves" of mine were causing the symptoms (this being the same goof who missed/ignored the cardiac symptoms for at least 3 years). Yup, us ladies sure have a lot of mental problems!!!!

My husband says he's never seen anything like a woman with heart symptoms for being diagnosed with anxiety, panic or just plain "bad attitude "

Thanks, Georgia. Nice to meet you.

 

[Karen7]

Yes, I'd have to say I was pretty darn anxious!! My vital signs looked OK, except for my funky rhythm. The Cardiology fellow later told me that with that rhythm and rate, I was perfusing which would explain my anxiety and SOB.

I did take a xanax and the rhythm did resolve on it's own, but not before scaring me pretty good. Important nursing lesson learned--always listen to your patient when they say they feel "strange". Especially when you know they are not the type to exaggerate.

Hi Carolyn,

Wow, you've been through a lot. My mother-in-law says you would have to have something mentally wrong with you NOT to be anxious with heart symptoms. It just mystifies me that so many doctors think that one negates the other.

Karen

 

[Karen7]

I understand completely. I was in the 8th month of pregnancy when I started having nonstop PVC's.

And they wonder why women are reluctant to go to the hospital with chest discomfort?

Hi Mary!

My symptoms started during a pregnancy too, and after I gave birth, they ran all sorts of endocrine tests (which came out negative.)

You are really recently fresh from surgery -- how do you feel? I keep wondering how long before I would feel like I did before symptoms.

Thanks for the insight!

Karen

 

[TjCarpenter]

Hi Mary!

My symptoms started during a pregnancy too, and after I gave birth, they ran all sorts of endocrine tests (which came out negative.)

You are really recently fresh from surgery -- how do you feel? I keep wondering how long before I would feel like I did before symptoms.

Thanks for the insight!

Karen

Any thought to having your thyroid function tested? might be a contributing factor here... Ask your Doctor. I know that you have already identified your heart's anotomical abnormalities - but - your fatigue, swelling and throbbing might come from thyroid too...

Tom

 

[CCRN]

Ditto

Ditto

GOOD Questions Karen !

If you don't have copies of ALL of your test results, I highly recommend that you obtain them. Then chart them by measurement on a spread sheet of data sheet.

Watch for CHANGES. As you already pointed out, your numbers may be 'normal' for most folks but because of your small size they may be more 'significant'. This is where CHANGES may be more important than 'bsolutes'.

Cardiologists typically seem to like to 'wait and see' while Surgeons like to operate before there is any permanent damage to your heart muscles or walls.

This is the time to be interviewing surgeons who have experience with your issues, find one you are comfortable with, and let HIM make the call as to when to operate.

'BE PREPARED' (as the Boy Scouts like to say)

'AL Capshaw'

Karen,

I ditto all of the above. Hindsite is golden and I have very recently been given an avalanch of it as I just had a Bentall procedure for ascending aortic aneurysm and stenotic bicuspid aortic valve 7 weeks ago. What would I have done differently? The first thing I would have done is insist on a MRI or CT with contrast to directly look at the ascending aorta. My situation was not totally addressed until my cath four days before the surgery. It was to be a "simple" aortic valve replacement up to that point. My aneurysm was 4.5 cm and was as large as my heart. I am 5' 3.5" and weighed 130 lb at the time. Most surgeons would not be excited about the measurement in a 6' 2" male but that 4.5 cm measurement made my ascending aorta almost 3 times larger than my desending. Get the picture? Absolutely insist on getting a surgical consult and ask for a surgeon who has extensive experience with the Bentall and valve replacement procedures. You see, not every cardiac surgeon regularly performs these procedures and, due to the technological difficulty, you want one that does over a couple of hundred a year if possible. You also need to take a look at the Bicuspid Aortic Foundation web site. Do a google search. It's easy to find. This congenital defect has other charateristics not regularly told to patients when diagnosed mainly because most physicians are not knowledgable in the other aspects of the defect. My own cardiologist admitted to me he was not aware of them until last year. Among those aspects are conective tissue disorders mainly affecting the ascending aorta as well as cerebral vessels. There are a few others listed as well. I really wish I had known all this at your point in the process.....some of it I did. I hope this is helpful.