Hi carol thanks, that's amazing. Must have been a great day at the dr for you! I saw your earlier post and was going to ask did you dr mention it or did you push for it? I'm going to ask my dr for it. Do you experience any side effects?
Bad day at the dr.
- Thread starter Tdot
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Carol
Well-known member
No,Dr did not say anything about it.I saw The work of Hal Dietz M D at John Hopkins.Some think BAV is some what like Marfans.The one that was suprized
was my Vascular Surgeon.
was my Vascular Surgeon.
Tdot,
Keep in mind that timing of valve surgery is a very complicate issue. Too late is bad, because your heart might have deteriorated to a point where it will not fully recover. But too early is also bad.
It is easy to become very anxious and want to have surgery quickly. And, if you try enough, you will probably find a surgeon willing to open your chest. But this is not the way to go.
Good and serious cardiologists follow protocols (that result from decades of experience with this kind of heart problem) that mark when it is time for a surgical fix. There may be some grey zone where some prefer an early approach while others prefer to wait and closely monitor. But my guess is that you are not there.
TRUST your cardiologist (a GOOD one). And dont let your anxiety precipitate an eventual surgery.
Keep in mind that timing of valve surgery is a very complicate issue. Too late is bad, because your heart might have deteriorated to a point where it will not fully recover. But too early is also bad.
It is easy to become very anxious and want to have surgery quickly. And, if you try enough, you will probably find a surgeon willing to open your chest. But this is not the way to go.
Good and serious cardiologists follow protocols (that result from decades of experience with this kind of heart problem) that mark when it is time for a surgical fix. There may be some grey zone where some prefer an early approach while others prefer to wait and closely monitor. But my guess is that you are not there.
TRUST your cardiologist (a GOOD one). And dont let your anxiety precipitate an eventual surgery.
Thanks mid pack. I agree id prefer to wait and see myself. I'm working on getting some second opinions and trying to keep calm in the meantime. In realty based on what I've been reading here I think it's more of a challenge to concur the anxiety than anything else I'm facing.
Hey everyone
I'm going to take your advise and also get another opinion from Another cardiologist in addition to the surgeon. Was thinking about it today and I'm not happy at all with how things were explained to me and that he was not able to provide any more information on why my LV was enlarged. I also feel like he never reviewed my reports in depth, it always seems like a scramble when he comes in the room.
As a matter of fact I recall a few yeas ago he almost missed my dilated root(43). I remember he just reviewed the file and said you can probably come back in 5 years...then last minute he saw the root measurement and sent me for an MRI.
I'm going to call my gp in the morning for a referal. I think getting more info from a few trusted sources will Give me a sense of control and reduce the unknowns and my anxiety.
I'm going to take your advise and also get another opinion from Another cardiologist in addition to the surgeon. Was thinking about it today and I'm not happy at all with how things were explained to me and that he was not able to provide any more information on why my LV was enlarged. I also feel like he never reviewed my reports in depth, it always seems like a scramble when he comes in the room.
As a matter of fact I recall a few yeas ago he almost missed my dilated root(43). I remember he just reviewed the file and said you can probably come back in 5 years...then last minute he saw the root measurement and sent me for an MRI.
I'm going to call my gp in the morning for a referal. I think getting more info from a few trusted sources will Give me a sense of control and reduce the unknowns and my anxiety.
That is a good decision. However, keep in mind that not allways, and particulary in medicine, there are answers to all question. So dont become frustrasted if you dont get a satisfactory one. Doctors often use the word "idiopathic". It basically means "we have no idea why you have this"
. To take a cardiologic example. There are people with a structural normal heart that have lot of pvc's. They probably dont drink, smoke, no caffeine, and they have them anyway. No explanation. But, after all, is it really important to have one? If they are harmless, even if its origin is not known, why to worry?Hi everyone
So good news and bad news I guess. My anxiety is way up again tonight. I came home and looked at my previous echo reports from 2010 and 2012 and compared to this year (I was missing 2011 and all measurement were done by the same tech. So good news my LV size in 2010 was 54, 51 in 2012 and 58 in 2013 so not a as drastic a change as I thought. Also other than the root size all other measurements are comparable and within range.
What freaked me out was my left atrium measurement. In 2011 it was 23 and it was 38 in 2012! It was also 38 this year. That kinda seems to me that there is something else happening besides my valve and it feels like Monday all over again.
Now it seems that 28-40 is the normal range so not sure if it was measures correctly. How can it go from below the minimum to just about maximum in one year? That's over 2cm different in one year and no change the next. Anyway I'm losing my mind. Good news is I'm meeting the surgeon on Saturday at a local clinic. Am I putting to much stock in the numbers?
So good news and bad news I guess. My anxiety is way up again tonight. I came home and looked at my previous echo reports from 2010 and 2012 and compared to this year (I was missing 2011 and all measurement were done by the same tech. So good news my LV size in 2010 was 54, 51 in 2012 and 58 in 2013 so not a as drastic a change as I thought. Also other than the root size all other measurements are comparable and within range.
What freaked me out was my left atrium measurement. In 2011 it was 23 and it was 38 in 2012! It was also 38 this year. That kinda seems to me that there is something else happening besides my valve and it feels like Monday all over again.
Now it seems that 28-40 is the normal range so not sure if it was measures correctly. How can it go from below the minimum to just about maximum in one year? That's over 2cm different in one year and no change the next. Anyway I'm losing my mind. Good news is I'm meeting the surgeon on Saturday at a local clinic. Am I putting to much stock in the numbers?
Agian
Well-known member
Why don't you ring his rooms and ask?
He probably didn't mention it because most of them only mention things that cause them concern. They don't always notice that things just might give the patient concern. That's why you really need to have a close relationship (professional friendship) with your cardio so that he/she can get to know what sort of things are of interest to you. You might be interested in things that the average patient wouldn't understand - especially from your time here.
You may be right. In any case I'll ask more about it this Saturday. Thank god it's soon because My anxiety is building, I'm scared that he'll tell me I have some untreatable genetic condition unrelated to my valve. I'm trying to tell myself that reality is my measurements are still normal, there is some stability year over year, I'm still young and symptom free, I know about my condition before it's causing me real problems or damage and there are likely treatment options worst case scenario. Thanks for the support once again.
Bad day at the dr.
Tdot, you dont have any genetic untretable condition. Stop thinking that. Your mind can be your worst enemy.
What you do have is an ANXIETY attack. Relax, relax and relax. And, if you cant, look for help. Psychological support, and, eventually, some pill (given by a doctor, NO self medication).
Beleive me. You will get better.
Tdot, you dont have any genetic untretable condition. Stop thinking that. Your mind can be your worst enemy.
What you do have is an ANXIETY attack. Relax, relax and relax. And, if you cant, look for help. Psychological support, and, eventually, some pill (given by a doctor, NO self medication).
Beleive me. You will get better.
chaidell
Active member
Tdot
I'm actually originally from Toronto myself! How old are you? When I lived in Toronto, I was referred to Dr. Harry Rakowski. He is considered the best cardio in Canada. Try and get referred to him for a 2nd or 3rd opinion. This is probably overkill, but perhaps you should get a TEE done to really see what's going on with your valve(s). I also don't think it would hurt to take a small dose of a Beta blocker to ease your Anxiety.
I'm actually originally from Toronto myself! How old are you? When I lived in Toronto, I was referred to Dr. Harry Rakowski. He is considered the best cardio in Canada. Try and get referred to him for a 2nd or 3rd opinion. This is probably overkill, but perhaps you should get a TEE done to really see what's going on with your valve(s). I also don't think it would hurt to take a small dose of a Beta blocker to ease your Anxiety.
Hey chaidell I'm 31. So he's a cardiologist not a surgeon? I'm actually going to see my gp on tues to ask for another opinion I'll mention him and see if I can get a referal. Thanks!
I didn't know beta blockers eased anxiety. Maybe the surgeon will prescribe some and I can kill two birds with one stone.
I didn't know beta blockers eased anxiety. Maybe the surgeon will prescribe some and I can kill two birds with one stone.
chaidell
Active member
Yeah, I'm 35, and I'm on atenolol (25mg) for my anxiety. Anxiety is considered a symptom of prolapse, so yes, you'd be killing 2 birds with one stone. At the end of the day, you have to just accept your situation. You will be fine.:thumbup:
I hate to bring this up, but anxiety and depression are often found in heart patients - even before they are diagnosed. It is thought by some that the body "knows" something is wrong and cannot deal with it, so it affects mood.
Beta blockers are, in fact, often used "off label" in psychiatric institutions as a mild form of anti-anxiety medication. My daughter worked in a psych facility for a while and said that the docs would often prescribe a small dose of metoprolol to patients, to "take the edge off."
All that said, anxiety and depression are both treatable conditions - and not necessarily with meds. If you are being affected by either and cannot manage or coltrol it on your own, by all means seek qualified help. These conditions can affect your ability to live a normal life, and may also affect your speed and quality of recovery.
Beta blockers are, in fact, often used "off label" in psychiatric institutions as a mild form of anti-anxiety medication. My daughter worked in a psych facility for a while and said that the docs would often prescribe a small dose of metoprolol to patients, to "take the edge off."
All that said, anxiety and depression are both treatable conditions - and not necessarily with meds. If you are being affected by either and cannot manage or coltrol it on your own, by all means seek qualified help. These conditions can affect your ability to live a normal life, and may also affect your speed and quality of recovery.
I recommend getting a little more data on the leakage. Meaning trivial does not say much. Get the number for your EF (Ejection Fraction) which will tell you how much leakage you have.
As for no symptoms, I barely had symptoms before either surgery. Before my 2nd, I did notice I was walking around with my mouth slightly open. However I was exercising very comfortably. My heart seemed to work at its best while exercising.
As for no symptoms, I barely had symptoms before either surgery. Before my 2nd, I did notice I was walking around with my mouth slightly open. However I was exercising very comfortably. My heart seemed to work at its best while exercising.
Thanks Scott. I looked at me report again and my Ef is around 64%. They also noted trivial mitral valve regurg. I do recall that a previous cardio I went to over three years ago listened to my chest and said he could here a murmur, but my current cardio doesn't. I wonder if they accurately classified the regurg? I'll ask about it. Is that something that can be misinterpreted?
Hi everyone
So I met with a surgeon today and what a great experience it was. Dr S. Verma from at. Michaels hospital in Toronto. First if all you were all right, there is definitely a big variation in echo readings. He did his own echo today and measured the root at 43-44 and lved was 51...was 58 at my cardios office a week ago! He said for sure I don't have some other genetic condition like cardiomyopathy. He's going to send me for an MRI and wants to follow up with me yearly. I thought that was incredible that he would take the time.
The best part was this guy is a real gentlemen and a hero in my opinion. He spent over 40 min talking to me am really made me feel at ease. Apparently he and his team wrote the book on BAV and published guidelines that are used worldwide. Also, he wants me to participate in a study on impact of meds on aortic root growth. That's means I'll be really looked after and I'll be able to give something back to the BAV community. Anyway and incredible dr and eye opening experience for me today. Thanks again for all your support the ought this tough few weeks.
So I met with a surgeon today and what a great experience it was. Dr S. Verma from at. Michaels hospital in Toronto. First if all you were all right, there is definitely a big variation in echo readings. He did his own echo today and measured the root at 43-44 and lved was 51...was 58 at my cardios office a week ago! He said for sure I don't have some other genetic condition like cardiomyopathy. He's going to send me for an MRI and wants to follow up with me yearly. I thought that was incredible that he would take the time.
The best part was this guy is a real gentlemen and a hero in my opinion. He spent over 40 min talking to me am really made me feel at ease. Apparently he and his team wrote the book on BAV and published guidelines that are used worldwide. Also, he wants me to participate in a study on impact of meds on aortic root growth. That's means I'll be really looked after and I'll be able to give something back to the BAV community. Anyway and incredible dr and eye opening experience for me today. Thanks again for all your support the ought this tough few weeks.
clay_from_nj
Well-known member
FYI - "Cardiomyopathy" is not a genetic condition, but a symptom of many conditions, some genetic, some otherwise. Of relevance here is that it is sometimes a symptom of a bad valve. And, if you have a bicuspid valve, you basically do have a genetic condition, as that is something you are born with. Don't be worried about "genetic" conditions, as everything could be ascribed to that in one way or another. If you have smallpox, one could say that the problem is that you are genetically susceptible to it. Old age? It's genetic.
(Yeah, it's a Wikipedia quote, but accurate.)
