Help me understand

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
My appointment is in one week. It's all been very odd to me. They called me after one month to very emphatically tell me that I *MUST* keep my follow up that I had originally scheduled when the echocardiogram was done.
 
I personally wouldn't count on the nurse warning you. As was said earlier she probably shouldn't have to you what she did. If you lift weights before your appointment you'll PROBABLY be ok but I don't get the point of it if you're appointment is in a week. As far as I can tell from your posts you have no idea if you have an aneurysm or not . If you have faith in the fact that the nurse definitely wouldn't have missed one if it was there then have at it.
 
epstns;n874710 said:
Did the doctor or nurse tell you there was any real problem? There may not be. IIRC, something like 2% of the general population has the bicuspid aortic valve condition, but only about 25% of that 2% ever need surgical intervention. That means that barring other findings, the isolated finding of a BAV may just mean that you need to monitor it for life, in case it ever starts to deteriorate.

If you have none of the "cardinal symptoms" of shortness of breath, fainting or chest pain, the docs may just tell you to come back every year or two for another echo cardiogram to ensure that none of the measurements of your heart are getting into dangerous levels. They will not recommend "preventive" surgery to replace a valve that is not a risk to your life. In fact, they only recommend surgery once they have calculated that your chances of death if you do nothing are greater than the chances of your death due to surgery.

Given your complicated situation, the longer you can safely wait before potential surgery, the better.

According to this article, 50% get surgery.
 
epstns;n874710 said:
Did the doctor or nurse tell you there was any real problem? There may not be. IIRC, something like 2% of the general population has the bicuspid aortic valve condition, but only about 25% of that 2% ever need surgical intervention. That means that barring other findings, the isolated finding of a BAV may just mean that you need to monitor it for life, in case it ever starts to deteriorate.

If you have none of the "cardinal symptoms" of shortness of breath, fainting or chest pain, the docs may just tell you to come back every year or two for another echo cardiogram to ensure that none of the measurements of your heart are getting into dangerous levels. They will not recommend "preventive" surgery to replace a valve that is not a risk to your life. In fact, they only recommend surgery once they have calculated that your chances of death if you do nothing are greater than the chances of your death due to surgery.

Given your complicated situation, the longer you can safely wait before potential surgery, the better.

you are too optimistic.... majority with BAV at some point do require surgery ! the valve by its nature deteriorates quicker than a regular valve.
 
Guest;n874682 said:
Hi. I need to understand the ins and outs of BAV and, more importantly, what I need to ask my doctor. I have a very odd background that adds complication to what I have learned form Google and here about what my options are.

I am in my mid 30s recently diagnosed BAV. I had a heart murmur since childhood. I have Crohn's disease. I have diabetes (type II, but always had issues with low sugar since I was a child). I have several other autoimmune disorders. I am allergic to the majority of antibiotics (amoxicillin, penicillin, erythromycin, azithromycin, etc.). I need to know what to ask my cardiologist in my upcoming consultation since my diagnosis, which was only given over the phone by a nurse.

I understand that a mechanical valve would be complicated by a bleeding disease like Crohn's (can I take blood thinners?). I control my diabetes solely by a low-carb diet--no medication and no insulin. I don't know how that complicates BAV treatments.

What measurements should I be aware of to ask my doctor? Do I really have a future if I need valve replacement, given my medical conditions?

OP , do you have symptoms ? I would not intervene without severe symptomatic disease
 
Guest. I too suffer from Crohn's and had OHS to replace my aortic valve and artery. Sounds like you've gotten a lot of good advice here. My Crohn's was pretty active when I had my surgery and I really wasn't an issue. Even though I opted for a tissue valve I still had to take coumadin for about a month. For me it really wasn't an issue as far as aggravating my gut.
 
NDNMD;n874730 said:
It's not always so simple. They all mean well. Here is my source about the intracranial aneurysm:

https://www.ncbi.nlm.nih.gov/pubmed/20439844

another thing to worry about..douh :) v interesting

reading steves stats, I remember finding slightly different stats somewhere,think it might have been cleveland website or similar
think it was 1-2% of the population have BAVD

of those 30% will have problems, and of the 30% that have problems 80% will need surgery, so if my maths is right out of 1000 people 2.4 to 4.8 people will require surgery for BAVD

stats are like opinions are like elbows :)
 
NDNMD;n874717 said:
How long is the diagnostic process? I am expecting to go in next week to pretty much hear that they need to do more tests (TEE maybe?). Then I will wait weeks for those tests and more weeks for the follow up. I read stories of people here getting a test result and suddenly getting a valve replacement. It doesn't seem like a logical process. My family keeps bugging me to work out, but I don't want to if its not safe.

yep unfortunately (for me anyway) it's not uncommon to hear of this happening, I was 6 weeks from the TOE to confirm the TEE (although I'm pretty sure they knew from the TEE) to the day of surgery

seems the heart compensates for failing gradually, for me I kinda thought it's just in my head but it was clearly alot worse, now days I think if they know it's failing they intervene before permanent changes to the heart structure occur
 
Last edited:
So 80% of the 30% of the 1-2% will need surgery?
Personally I would ignore the advice that tells you to ignore it unless you have severe symptoms. Unless the person giving the advice is a highly rated cardiologist or surgeon. I'm sure the cemetery is full of people who were convinced they had no symptoms. I would research the subject, trying not to make yourself crazy, and get the best medical team you reasonably can. Then get the necessary tests done and armed with the results ask all relevant questions of the cardiologist/ surgeon. Then if you need a valve, unlikely right away, go about deciding what's best for you after taking into account the plusses and minuses.
 
I'm really confused, now. . . all these numbers. . . mine are from memory, and may be fuzzy, but comparing my memory to Warrick's stats, the end result is similar. A large percentage of BAV patients don't seem to need surgery. This may be out-dated, as can any stats about medical issues, as new information is added to the library.

At any rate, I think Paleowoman has hit on a good point. If your cardio thought your case was so severe as to restrict your activity, I would expect that they would have somehow indicated something. They might have told you that further testing and action is urgent, they might have instructed you what not to do, etc. I don't know how close you are with your cardio, but if I have a question like this, I can call my cardio's office and speak with either the doc or his assistant to get an answer.

As for restrictions if you have BAV AND other issues, there will be some. I lived many years with my BAV and steadily worsening aortic stenosis (stiffening of the valve so it does not open fully). As my valve deteriorated, my cardio instructed me to stop lifting heavy weights (he said nothing over 40 pounds), but that I could lift light weights and do more repetitions. At my age, I wasn't trying to "get big" and the lighter weights at higher reps allowed me to retain muscle tone and definition.
 
Its hard to tell if I have symptoms. I originally at the end of last year had a lot of chest pains, but I don't have so many now...cant distinguish between any potential ones and normal pains that a person gets. I have periods of lightheadedness, but thats usually when I am driving. Somehow, when I am driving, there is a lot of pressure in my head, especially if I try to talk and drive at the same time. I get out of breath, but that could just be anything--even in my head I guess.
 
I got my initial results. My aortic aneurysm is 3.9. How is that number overall? There is only minor stenosis. The doctor prescribed an ACE inhibitor for the paroxysmal a-fib and to keep the aneurysm from growing. He wants me to undergo a cardiac MRI this month to see how much regurgitation there is. I will need an ECG every year and a cardiac MRI every 3 years. He thinks it might be 10-20 years before I need a valve replacement. Does this seem expected/par for the course? He only wants me to lift weights such that it isn't a huge strain as well, but otherwise no real physical restrictions.
 
I have no experience with aneurysms, but 3.9 doesn't seem anywhere near the "action" point. I think they recommend surgical intervention at 4.5 or 5.0 cm, IIRC, so it will be watch and wait for that one. I am surprised that they don't want to do an echo every year, just to give them a sort of barometer on what is happening. The typical echo is the transthoracic one - done via an ultrasound probe that they just move all around over your chest and abdomen. They can get some decent information about the regurgitation and some general info about the aneurysm that way, and it is far less costly than the MRI. I'm not an MD, so my opinion is only that of another patient, but it might be worth asking the cardio about.

As for restrictions, the advice to lift weights but avoid straining sounds like what I was told. I switched from heavier weights (up to about my own body weight) to much lighter ones (15-lb hand weights) but increased from 5-10 rep sets to sets of 35 reps. It may not sound like much, but try doing one-handed curls with a 15-lb. weight in sets of 30-40 reps. You won't "get big" but you will retain muscle tone and definition. At my age, that's enough for me.

Make yourself at home. It sounds like you may have a lengthy stay in The Waiting Room - the virtual room where many folks await their own turns at valve surgery. I was The Waiting Room host for about 10 years - until I finally had surgery. I think we need to find a new host. . .
 
Sounds like positive news to me, unless you are hankering to get into the operating room. My stenosis was moderate to severe with the need for surgery within a year. I opted to have it as soon as possible. Many here were in the waiting room for years and I'm sure they will give you some encouraging words.
 
Correction and update. The doctor did not prescribe an ACE inhibitor, but instead Losartan, which is supposed to help slow dilation of the aorta. I am certainly not anxious to undergo surgery, but I will get anxious if the aneurysm grows, given the possible risk increases. I guess that's life in the waiting room.
 
Well, the MRI results came in and confirmed the ECG, but added a diagnosis of left ventricular noncompaction, for which there seems to be very little information for me to learn about.

Otherwise, I have no aortic stenosis, mild aortic regurgitation, and an aortic diameter of 3.9, which they said was upper normal range. (I think more that its lower abnormal range.)
 

Latest posts

Back
Top