Bicuspid congenital valve and thoratic aneurysm

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I have a congenital valve bicuspid im 30yrs old very healthy and fit i didnt know about this condition until they find out last week my aorta is dilated to 4.1 just the root area they just put me om beta blocker i had headaches they did a carotid ultrasound and my arteries are in good shape no dilated and good blood flow i have a question for you guys...is there a chance since this is congenital that my aorta has been like this for years and what are the chances of keeping growing or staying on the same size 4.1 i was told sometimes never grows please advice

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  • Posted

    Jason this is so new to me but from the research we should be very glad that they found them. The question in your  mind and in my mind is the unknown of how long we have had them. If we could know that it would be easy to see if  it is growing. Sorry probably not helping you.
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    • Posted

      Thanks for the reply stan i been thinking becouse i been lifting weight at the gym for the las 2 years without knowing about this condition so maybe that make things worst anyways hopefully stays on the same size specially now that im not doing 2 much lifting and keeping a low blood pressure i will keep updates with the time good luck..
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  • Posted

    Hi Jason,

    I was diagnosed with a bicuspid valve and an aneurysm (4.6cm) in 2013 at age 37. One year later it had grown to 5.5cm and I had surgery. My bicuspid valve was reshaped into a functional tricuspid valve (not always possible) and a Dacron graft replaced the aneurysm portion of my ascending aorta. The recovery is tough but manageable, being young and fit is the best possible medicine. I have done lots of athletics throughout my life (heavy weights, grappling, kickboxing, running...). I often wonder if that sped up the progression, who knows, but I think it definitely sped up my recovery. 2.5 years later I am doing very well. Within a few months even I was very active again. I can't lift heavy weights anymore based on doctors orders, I am supposed to be able to lift a weight 15-20 times consecutively, otherwise I should just leave it alone. No more 1rep maxes! All cardio exercise is encouraged.

    I don't say all this to scare you, because your aneurysm could very well never need surgery. They typically don't even consider surgery until 5cm, sometimes 5.5 depending on other circumstances. However if it does need surgery one day, it is not a death sentence. Your life will change in some ways but I really don't think much about it anymore. I just take my beta blocker every morning and try to take care of myself and go about my life. If you can look at the bright side, now that you know you have it, it will be monitored and can be fixed before a life threatening event.

    Take care, Mike

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    • Posted

      Thanks michael i hope my valve could be repair in case i need surgery so far my only symptoms are headaches everyday im not sure if is becouse of the dilated aorta do you ever experience any symptoms thanks for your helpfull review
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    • Posted

      I did not have headaches. However, I was having chest pains, which is why I went to the doctor. They kept telling me I should not feel pain, that the chest pain was coincidental due to stress (I was going through a very stressful period). Make sure to get yourself to surgeons that specialize in valve sparing surgeries. Not all cardio thoracic surgeons are trained in them.
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  • Posted

    Hi Jason I found out on my 30t birthday that I had bicuspid valve with regurgitation and aneurysm of 4.1 which has grown to 4.5 in the last year. I am also fit and healthy and was also put on a beta blocker. I'm having surgery n the next few months to fix the aneurysm and repair valve. I had bn running and doing a little gym work but surgeon has told me that I will have to restrict on all exercise if I decide to hold off on surgery and watch and wait for another year, ive decided to go ahead with surgery and hopefully get back to normal.

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    • Posted

      Good luck Casey. Keep a good attitude and surround yourself with positive people. And walk, walk and walk some more once you are cleared by your doctors. Staying moving and getting fresh air kept me sane.
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    • Posted

      Hi Michael,

      My mum had surgery for the same thing 7 weeks ago at the age of 65 and is doing really well which is very encouraging and I kind of know what lays ahead now. I have researched and feel like im ready my only prob is trying to decide between tissue or mechanical valve if my valve cant be spaired, dont like the idea of warfarin for the rest of life. Its amazing that you had your valve reshaped into a functional tricuspid valve I might just ask my surgeon about this when I see him in December. 

      Take care and thanks,

      Casey 

      Casey 

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  • Posted

    Hi Jason

    Not sure if you can see the history of my past post but yes you probably had the aneurysm for years, in most cases they are slow growing. Mine was found in 2007 while I was preparing for another procedure. It was 4.6 at that time and didn't grow for approximately 8 yrs. I had open heart surgery 5/2016. Sometimes they don't grow any larger, other times they are slow growing. I pray yours doesn't continue to grow. Knowing of its existence takes getting used to but it really is beneficial if you can get past the fear of what could happen! The knowledge will forever changed the way you think...

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    • Posted

      Hi gigi thanks for sharing your history i feel better knowing that you guys recover and feel better after surgery i will keep updates in the next few months i know they have great surgeons here un south fl so just in case i will have the best profiles and select the best one i case i need them..is feels weird knowing that you may need that surgery one day and beside that you have to think about selecting a valve and the best option to me will be the biological one but still not the best option becouse one day there will be another surgery so hopefully they make new options in the future
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    • Posted

      Very true, it is hard knowing that one day surgery is eminent. It was interesting the last 8yrs for me hoping that it wouldn't and I wouldn't need the surgery. I hoped for endovascular surgery but no such luck! My doctor talked to me about valve houses incase it was necessary but "whew" it wasn't! I chose the tissue one although I didn't want to position myself for additional surgeries down the road. The mechanical one carried too many risk for me and medication "blood thinners" for the rest of my life...hmmm... I pray the surgery has progressed to being a lot less invasive should you have to go forward with it. Keep us informed and we will help if we can.

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