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cldlhd
Well-known member
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.
ashadds
Well-known member
epstns;n874710 said:
you are too optimistic.... majority with BAV at some point do require surgery ! the valve by its nature deteriorates quicker than a regular valve.
ashadds
Well-known member
Guest;n874682 said:
OP , do you have symptoms ? I would not intervene without severe symptomatic disease
bugchucker
Well-known member
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.
Warrick
Well-known member
NDNMD;n874730 said:
another thing to worry about..douh
v interestingreading 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
Warrick
Well-known member
NDNMD;n874717 said:
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
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cldlhd
Well-known member
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.
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.
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.
cldlhd
Well-known member
It could be in your head or it could be a symptom.
Or it could be a symptom of something else wrong - respiratory symptom, digestive symptom, for example.
cldlhd
Well-known member
Ya there are lots of things lightheadedness can be a symptom of.
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. . .
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. . .
honeybunny
Well-known member
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.)
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.)
