Please help me

[surfsparky]

My aortic root was 4.0cm before surgery and they didn't even bother 'fixing' it as it was considered normal for my size and build. It's now 4.4cm and I get annual check ups. You have seen all of the experts...now it's time to trust their advice. When I got anxious pre-surgery, my wife organised the perfect antidote - a holiday just together with our 8 month old and 3 year old. It put everything into perspective...and we made some great memories as a family. Seeing someone to talk about all that you are feeling is a good idea...good to face our fears and find ways to deal/manage them. Sounds like you have a whole lot of living to do! Enjoy!

 

[john79t]

At age 18 Doc on football physical thought he heard a murmor. I played football through college, did body building and spent 30 years with the Army. At age 39 I was dignosed with mild aortic stenosis . Continued all activities including 2 mile run on the Army physical fitness test. At age 61 BAV progressed to sever. Had AVR at 61 and everything is great. I also had a 4.5 in my ascending. Please get whatever help you need to enjoy life. This is not a death sentence. Just do your checkups and be happy when they are good. Plenty of time to worry and make plans for getting things fixed when they start going south.

 

[themalteser]

Hi, sorry I have not replied yet, I am reading all your posts, and taking everything in.... I'm so grateful that you're all so kind in helping me, I really appreciate this so much. I am trying to trust my cardiologist reassurance, that I don't have anything to worry about, and that this might take many many years if it ever progress.

Quote from one of top surgeons:

"Dear Brian
please do not worry as this can cause you more health problems than anything else. I agree with your cardiologist that any progress is very gradual, and you may keep the same dimensions for many many years.
all the best."

It's kind of hard to trust, and especially, I looked at the bicuspid foundation, and totally scared me, I felt hopeless reading the website, as it made me feel that this is horrible and raised my anxiety up the roof.

Your personal experiences and reassurance means alot to me, I need this so much.

Thank you all for your help, honestly.

John79t - was your aortic root always a bit larger?

 

[Superbob]

It's kind of hard to trust, and especially, I looked at the bicuspid foundation, and totally scared me, I felt hopeless reading the website, as it made me feel that this is horrible and raised my anxiety up the roof.

The Internet can be a wonderful resource but excessive medical surfing can scare anybody, in many cases without cause. Definitely, trust the cardiologists and surgeons you've consulted, not the Internet, which is filled with worst-case scenarios. I think it would be a good idea also to receive some counseling from a professional.

 

[Marcia58]

Brian, one thing to remember about medical blogs, message boards, etc., is that (in my experience) their population has a high percentage of "worst case scenario" stories: the people who had a negative outcome for whatever reason. Granted, there are those like us, who try to provide an informative but encouraging voice online. The general pattern I see, though, is that the negative outcomes are the ones that get "published" and the majority of people--who don't have a nightmare story to tell--are too busy enjoying life to be bothered with blogging about their joys!

Praying that you can find some peace....

Marcia

 

[vtbecca]

""Brian, one thing to remember about medical blogs, message boards, etc., is that (in my experience) their population has a high percentage of "worst case scenario" stories: the people who had a negative outcome for whatever reason. Granted, there are those like us, who try to provide an informative but encouraging voice online. The general pattern I see, though, is that the negative outcomes are the ones that get "published" and the majority of people--who don't have a nightmare story to tell--are too busy enjoying life to be bothered with blogging about their joys!""

Marcia hit the nail on the head here. The ones who do have issues from whatever health problem it is are just more likely to post. I have found that I post more when something is up than when things are going well. My youngest has a rare neurological disorder that is often progressive. For now he has very few symptoms and we just wait for his symptoms so worsen, but in the years since diagnosis it hasn't changed all that much. There are horror stories of surgeries gone wrong, and it's not often that people tell of their successes. They don't need the support as much when things go well. If you have that many doctors telling you it will be OK then chances are it will. Follow up regularly with your cardiologist and they will catch things when they need to. In the meantime counseling may help you just deal with the fact that you now have this diagnosis and the uncertainty of the future. As others have said it could be many many years before you need surgery.