New here could use some encouragement

[user 16505]

Hi Everyone, I am new to the site, have been lurking for a few days but this is my first post.
Last year I had to have an ECHO after an abnormal EKG for a routine physical. It was discovered that my right aortic valve, to quote my GP, is slightly dilated at 38 cm. I was an absolute wreck (I also suffer from severe anxiety) but she assured me that I should not worry. The f/u with the cardio was fine, all a blur in hindsight because I was so frightened. He explained the range, etc of aortic size and told me to come back in a year for a follow-up. That date is approaching and I am a mess, I am so scared to have another ECHO and get the results, if it has grown I will be in a panic. I do not have BAV or any other heart issues so I am hoping that the dilation is a result of higher BP which I will get under control. Do you know if it ever happens that a dilation stays the same size and doesn't progress? Is surgery always necessary? Thanks so much for your help

 

[dick0236]

Are you sure your docs are talking about your valve or the Aorta itself. Does not sound like a valve issue but rather a dilated Aorta and an aneurism? Whether it is a valve or aneurism it is fixable. Read thru the posts on this forum and you will be comforted by what you read.......and you will become more at ease as you understand what you have.

 

[Richie Rich]

I'm guessing you mean your Aorta and not your valve, but Aortic enlargment is usually accompanied by valve leakage or BAV when close to the valve, but your cardio will advise you best about this. At 3.8 CM which is what I assume you mean you are not considered in the danger zone. My Aorta is 4.2 at last measurement but I'm realistic and prepared for enlargment at my next scan this year. I also have a leaky BAV which I known about for years but the aorta was only found a few years ago. Initial freaking out about this is perfectly normal, I got quite depressed then a little crazy. Now I just chill out about it, but when my cardio tells me it's time to replace the valve and aorta I will freak out again until I've had it done. Yours may be stable for many years so relax and keep an eye on how things progress.

 

[DachsieMom]

It's natural to freak out, but as others have said, it is fixable. How tall are you? If you are tall they will likely just monitor you. Even if you do need surgery, it's so routine for these doctors. My aneurysm was also around that size but I am super short and was having odd symptoms so they replaced my aorta and valve.

 

[user 16505]

Thanks so much, everyone. I guess I mean aorta root but I can't recall specifically. This time around I'm bringing a list of questions to cardio, I was so nervous last time I just wanted out of there.
does anyone know if all dilations progress or do they ever stay the same? Dachsiemom I am 5' 9 female - may I ask what surgery was like and how long did you go before needing surgery?
Do you know what caused your dilation, I have no indication of prior heart problems or BAV.

 

[ZechariahLi]

Hey Nelson, this is my first post too. It's normal to freak out and went crazy. I did.

I found out I have BAV with severe AR on Dec 18, 2016. The cardiologies told me I will need an OHS for a AVR when the time comes. Since then I had severe anxiety, I couldn't eat and sleep. I have lost 3 kg in 2 weeks (I tried to loss weight in 10 years and I have not ever achieved such results).

This forum is a lot of help, there are people out there showing u r not alone, that they got their problems fixed and are now living their life to the fullest. I get much better now, for 2 days I finished my lunch. I talked with friends, prays and find peace with God. Through this incident I also learned the important things in life. I spend more time with my wife and kids, spend less time at work trying to impress my bosses. I spend more time reading the Bible and re-committing myself to the work of the Lord, instead of trying to get more money and climb the corporate ladder. Knowing my conditions helps me to eat healthy, rest more and invest my time on meaningful and important things. But still, I'm afraid. Like what Richie said, when the time comes I probably will freak out again. But now we got to carry on our lives.

My cardiologist told me things progress slowly and it takes time fore the heart to change, so I pray you have plenty of time before you need any procedures and wish you all the best!

 

[ZechariahLi]

I'm guessing you mean your Aorta and not your valve, but Aortic enlargment is usually accompanied by valve leakage or BAV when close to the valve, but your cardio will advise you best about this. At 3.8 CM which is what I assume you mean you are not considered in the danger zone. My Aorta is 4.2 at last measurement but I'm realistic and prepared for enlargment at my next scan this year. I also have a leaky BAV which I known about for years but the aorta was only found a few years ago. Initial freaking out about this is perfectly normal, I got quite depressed then a little crazy. Now I just chill out about it, but when my cardio tells me it's time to replace the valve and aorta I will freak out again until I've had it done. Yours may be stable for many years so relax and keep an eye on how things progress.

Hey Richie, how long have you been in the waiting room? And how severe was your leak? I'm just praying I have more years before the need of an OHS. I will be 29 this year and having Ah OHS early meaning it's more likely to have an re-op right?

 

[ZechariahLi]

It's natural to freak out, but as others have said, it is fixable. How tall are you? If you are tall they will likely just monitor you. Even if you do need surgery, it's so routine for these doctors. My aneurysm was also around that size but I am super short and was having odd symptoms so they replaced my aorta and valve.

Hey Dachsie, is being short a variable here? I'm 169 cm male, I thought being short is advantages here since the heart don't need to work hard to pump long distances.

 

[DachsieMom]

Yes, if you are very petite then they may operate at a smaller size. I am 4'9" so my aortic aneurysm (and sinus of valsalva aneurysm at the root) was large for my size. My surgery was only about 3 months after I found out - but apparently both my sister and I have a gene that predisposes us to aneurysms. My sister had surgery 6 months before me. Neither of us have BAV or prior heart issues. On the bright side, we are now fixed for life.

 

[AZ Don]

Thanks so much, everyone. I guess I mean aorta root but I can't recall specifically. This time around I'm bringing a list of questions to cardio, I was so nervous last time I just wanted out of there.
does anyone know if all dilations progress or do they ever stay the same? Dachsiemom I am 5' 9 female - may I ask what surgery was like and how long did you go before needing surgery?
Do you know what caused your dilation, I have no indication of prior heart problems or BAV.

I have read that once the aorta exceeds 4.7cm progression is virtually inevitable. So no, from 3.8 cm progression is not necessarily inevitable but on average aortic aneurysms grow about 1-2mm per year. Technically I think at less than 4.5cm it is considered dilated rather than an aneurysm, so perhaps growth is even slower. The current guidelines for surgery are generally at 5.5cm so it is likely to be a long time before you need surgery, if ever. As to what causes aortic aneurysm, it is associated with connective tissue disorders like Marfans or Ehlor Danlos and also with Bicuspid Aortic Valves. There are some known genetic variations associated with it but also people can have aneurysms for no apparent reason. It is known to run in families so your parents and children should probably have an echo to check for aneurysms - I would ask your Dr. about this as well as any lifestyle suggestions. At 3.8cm I doubt your Dr would suggest any restrictions but in general heavy weight lifting and very strenuous exercise are not recommended for those with aortic aneurysms. My aneurysm was already 5.1cm when I found out about it, and I had surgery a little more than a month later (the guidelines at the time for those with BAV were 5.0cm, now revised to 5.5cm) The surgery was not so different from any other. It hurt much less than my knee surgery. I was getting around well and walking about a mile a day just one week later, and swimming less than 3 months later.

 

[user 16505]

Thanks AZ Don, glad to hear your surgery went well. I will talk to my doctor about whether my 12-yr old should be checked but now the thought of him having something like this is terrifying me. Did anyone in your family get tested?
i can't help but wonder why EKGs and/or ECHOS aren't part of physicals earlier on, I only was given one by my GP because she was putting me on some new anti-depressants and wanted to check things out first.
Thanks everyone, I am still full of anxiety but all of your feedback is so helpful.

 

[AZ Don]

My Mom, my sister, and my children were all tested for aneurysms, and none of them had any issues.

 

[user 16505]

Thanks, Don.
How often do you seen your cardiologist now?

 

[cldlhd]

Thanks AZ Don, glad to hear your surgery went well. I will talk to my doctor about whether my 12-yr old should be checked but now the thought of him having something like this is terrifying me. Did anyone in your family get tested?
i can't help but wonder why EKGs and/or ECHOS aren't part of physicals earlier on, I only was given one by my GP because she was putting me on some new anti-depressants and wanted to check things out first.
Thanks everyone, I am still full of anxiety but all of your feedback is so helpful.

They're not included because they cost money. I pushed for a stress test even though my EKG , blood pressure, etc were all good. My doctor said I didn't need it but agreed and that's when they found my bav and aneurysm.

 

[user 16505]

I guess I am fortunate to be here in Canada where it is covered. But again, I rarely hear of anyone getting one, at least at my age, as part of a routine physical.

 

[Paleowoman]

No one in my family has been tested. This hasn't even been mentioned. My son, who is a hypocondriac, has often asked his GP to listen to his chest and to his heart - no murmur has been heard so far (he's 27) so that is a good sign. My murmur from BAV wasn't heard until I was 25. When docs listened to my chest when I was younger there was no murmur. I didn't need AVR until I was 60 so I wonder about screening in younger people unless they have symptoms.

 

[user 16505]

Thanks for the feedback, Paleowoman, I will discuss with my cardio on my next appt (my second one since my initial consult last yr). I am still very new to all of this. May I ask how many years you went before you needed surgery for valve replacement. My aorta is 'slightly dilated' at 37 mm but I am worried that it will have increased over the past year and I have had a lot of stress and anxiety.

 

[AZ Don]

Thanks, Don.
How often do you seen your cardiologist now?

Initially it was every 6 months when the leaking went from trivial to mild to moderate. Now that it stabilized I go annually.

 

[Paleowoman]

Thanks for the feedback, Paleowoman, I will discuss with my cardio on my next appt (my second one since my initial consult last yr). I am still very new to all of this. May I ask how many years you went before you needed surgery for valve replacement. My aorta is 'slightly dilated' at 37 mm but I am worried that it will have increased over the past year and I have had a lot of stress and anxiety.

Hi Nelson - I went from age 25 to age 60 before I had surgery - that's 35 years !

I didn't have a dilated aorta, just bicuspid aortic valve. And I never had any symptoms, even immediatley prior to surgery - apart from anxiety then of course.

 

[Richie Rich]

Hey Richie, how long have you been in the waiting room? And how severe was your leak? I'm just praying I have more years before the need of an OHS. I will be 29 this year and having Ah OHS early meaning it's more likely to have an re-op right?

My leak was found when I was 12 and I'm 43 this month it's always been considered slight to moderate but is getting worse. The Aortic enlargment was only confirmed about three years ago by MRI but it has been mentioned previously after echos but I didn't really understand what it meant until I had the MRI and my cardio explained it to me properly. I been In the waiting room many years my next appointment is in April and I'm due another MRI this year, I'm realistic that my luck will run out soon and I will be facing surgery, but I may as well enjoy myself in the meantime. Just stay calm and relax that's my motto