Got a bicuspid heart valve and aortic aneurysm

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I am a 21 yr/old male; 6'3'', 215 lbs... been having breathing problems for two years. Found out I was born with bicuspid heart valve with mild regurgitation and developed 4.6 cm thoracic aneurysm in descending aorta. Besides heart am perfectly healthy. Developed hbp 8 months ago but mostly under control. Also have some acid reflux. Difficulty breathing and constant chest tightness. Chest, neck, and back pain with increased heart rate. Cardiologist and surgeons say not bad enough to be causing symptoms. Any help would be apreciated.

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  • Posted

    Hi

    I have the same ,an ascending 4,5 arotic aneurysm, and bicuspid heart valve

    I'm 50 and 5'6 145 have no clue is height and weight make a difference ,I just found out not long ago ,was a shock,do have a family history though.

    But same tightness in chest always and breathing they say the same drives me crazy ,like it's all in my head! I'm where you are looking for more help also! I'm so sorry wish I could be help, good luck ,I know it's frustrating!

    Deb

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  • Posted

    Hi,

    I am 30 year old female with bicuspid aortic valve, mild regurgitation and ascending aneurysm. I.am otherwise fit and healthy my aneurysm has gone from 4.0 / 4.1 to 4.5 in just one year. My consultant has recommended surgery if I wish to go ahead or I have to restrict my life (used to run and little gym work so have to cut back or stop). I am going to go ahead with surgery, my only symptoms are breathless goin up stairs and palpitations. I take a beta blocker and have done since my diagnosis almost two years ago and which has obviously have made no difference! Hoping to have surgery in January / February.

    Casey

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    • Posted

      Hi emem10710,

      Yes I had my surgery on the 13th Feb and it's bn some experience!! I had never had any kind of surgery before so this was all new but came through it and thankfully with no problems at all. I have a new cow valve and aneurysm gone! They told me n the hosp that I had a v high pain threshold as I had no pain just discomfort at incision site and was on paracetamol. I'm feeling great wonderful really back running and doing some gym work and went back playing football last night (nothing serious)!

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    • Posted

      Hi Casey... I have some questions. I'm 42, 112 lbs, 5'4" otherwise healthy. Paternal family history of multiple aneurysm. Dx bicuspid aortic valve when I was 12 remaining unchanged until a few years ago with addition of aortic root and ascending aorta dilation. My measurement maintained at a 3.4 for at least 4 years. However, my echo from 2015-2015 had an increase to 4.2 in that year. My BP is completely erratic but mostly "normal". I have regular and frequent dizzy spells where I experience double vision and my teeth go numb. My flutters/palpations have increased dramatically, along with rapid and/or pounding heart beats. Other than increasing my beta blocker dosage (now only 25mg daily) my cardio doesn't feel any sense of concern or urgency at all. Surgery is no where in his forecast. Personally, I fee something is developing and at times I don't comfortable how I fell. If that makes sense. I too have a high pain tolerance and don't "wimp out" easily (don't over exaggerate sickness, just suck it up and get on with it). I'm very concerned and his lack of urgency or concern. I've read where you feel better after surgery, but do you feel it's something you could've waited on or are relieved it's over? I feel he needs to take it more seriously, but then I wonder if I'm just being paranoid. I'm very in tune to my body. Thanks for your help.

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  • Posted

    Hi,

    I'm older and have a bicuspid valve and aortic root aneurysm (5.7cm). I understand about the breathing problem - I think between that and being "uncomfortable" when bending over was my first indications of a problem. Of course I thought it was because I was getting older and out of shape.

    I have had the same symptoms as you. My cardiologist indicated it was part of my condition - the chest tightness, discomfort in my back and just under my ribcage. I was told no heavy lifting and not to exercise to the point of being breathless.

    This doesn't really help you, but I will tell you that shortly after hearing about the valve and aneurysm, I think I had my first real panic attack. nhami021, I called an ambulance (I was home by myself) and was taken to the hospital. I had many of the symptoms of a heart attack. Short of breath, heart racing, nausea, pain under my left arm, and heaviness in my chest. I was told not to wait to call if I had symptoms. Better safe than sorry.

    I still get what might be referred to as "angina" pains, I have palpatations, and get short of breath. I don't know when I should or should not call for help. I do not have a date for surgery yet. The waiting is the hardest part, that and not really knowing if you need to get help.

    Like deb22635, I wish I could be more help. If you are looking for support, I have a few facebook groups I belong to and would share with you if that might help. Just message me and I can send you links.

    Best wishes.

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  • Posted

    Hello. So glad I came across this discussion group. Here's my story. 43 yo male 6 ft, 170. Healthy. My mother passed away last month following her second open heart surgery for aortic valve replacement. She was 74. After meeting with the heart surgeon, he advised me that my mothers heart condition was hereditary and that I should get an EKG to see if I had any valve related issues. The EKG revealed a bicuspid aortic valve with mild to moderate regurgitation. Everything else was good. No signs of heart wall thickening or aneurism. My family practice doctor referred me to a cardiologist. I don't see him for over a month.

    Anybody out there have a similar condition? If so, what can ,I expect? All I've been told is that there is nothing that can be done by there than monitor the condition? I'm a little freaked out over all of this.

    Thank you

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    • Posted

      Hello Frank, glad you found us, too. It's great news that you do not have an aneurysm! I have a bicuspid valve and a 5.7cm aortic root aneurysm. I was diagnosed in March after several trips to the emergency room at the hospital. Originally diagnosed as Afib, twice. Third trip to ER in a larger city and the doctor heard a heart murmur so she sent me to a cardiologist. His tests included a Echo, where they found the bicuspid valve and the aneurysm. I was told that surgeons normally wait until the aneurysm is 4.7 to 5.1 cm before doing surgery. I am 61, so my valve has worked a few more years than yours, causing calcium build up across the leaflets. The improper flow of blood has caused the aneurysm. 

      I had no symptoms, or at least didn't connect any symptoms, until my heart began racing, and kept racing for longer and longer periods of time. My family doctor couldn't find anything, even after wearing a 48 hour heart monitor. I have palpatations, and he did see a couple of blips, but that was all. He advised me to go to the hospital if I had another occurence that lasted more than 5 or 10 minutes of racing heart.

      They will monitor you, until they feel surgery to replace your valve is necessary. There are always risks with any surgery, and if your current condition isn't creating any medical difficulties for you, then why risk the surgery. Just make sure you are seen regularily by the cardiologist. Watch your blood pressure (mine went through the roof, even after I was diagnosed - it is more under control now to the point of being on the low side). Pay attention to your body, it does tell you when something is not right. Looking back now, I should have been to see a cardiologist years ago, but like I said, I didn't connect my symptoms.

      Hope this helps.

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    • Posted

      Thank you. Yes, this helps. I see the cardiologist in a couple of weeks. I truly appreciate your feedback.

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  • Posted

    I am in the same boat, as I learned today. I am 46, and have a 5cm aoritc root aneurysm, along with a bicuspid valve. I am still awaiting a consult with a thoracic surgeon, and don't know enough to add much support. I will say this much--I know a lot more about them than I did this time yesterday, when it wasn't something I knew I had. 

    I am 6'2" 188 pounds, and working on that. I am in decent shape, and until last night, worked out regularly. As of today, I am now caffiene free and mourn the passing of my coffee. I had no symptoms at all, well, none I can recall. I had good blood pressure, decent BMI, though I do have highish cholesterol, but not high enough to medicate.

    As an aside, I am scared out of my mind. That said, this site, and a couple of others like it, have done a lot to help me put it in perspective. Is it dangerous? Yes. But to face it head on, to know about it, be aware of it, and have a plan to treat it before dissection, that is a real peace of mind. 

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    • Posted

      Scary, I know. If you go through this forum, you'll see there are many people who are in the same position...or were, until they had their surgery.

      Like you, I educated myself. I scared myself. Now, I am a little less stressed out about all the waiting I seem to have to do before I can get anything done.

      Hope you get some answers, and you aren't delayed getting surgery.

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