Questions for those with MVP/BAV

[Wise]

Thanks for starting this interesting thread.
P. J.

Another thing, P.J., you're welcome by the way. I want to say that for me to start this thread it took a little willingness to be vulnerable. I've had a little fear hanging around in the back of my mind when it comes to discussing what the medical profession may consider to be "strange" symptoms. I, oddly, feel that I have been vindicated by not being "rejected" by you good people. I'm sure others can relate to not saying anything to doctors anymore because of past rejections, perceived or real. So, thank you.

 

[Wise]

Hi, P.J., I am nearsighted and getting more so each year. But, I wouldn't say "very" nearsighted in that I can see without my glasses, but I'm not comfortable driving without them. I definitely can't drive at night without them. I don't know anything about Marfan Syndrome, but I'm going to check it out. I'm not a big person still, but not as small comparatively as I was when a child. I'm 5'6", weigh about 155 (gained a little because of stress in the last three weeks). Thanks for the info! Wise

P.J....I read the info you linked about Marfan Syndrome. I definitely don't fit the body type...no long fingers...no long legs. That's a good thing. However, there does seem to be some possilbe links to connective disorders from that I've read...as far as BAVD goes, that is. Make sense?

 

[PapaHappyStar]

Wise,

I had "ocular disturbances" for atleast 3+ years before surgery -- had a translucent curtain in the lower peripery always to one side or the other ( I think it was the right side ?? ) anyway I havent had this in the four months since surgery and am convinced that my aortic stenosis had something to do with it -- it might even be useful as a sort of early warning system, the frequency of the disturbances had increased with time before surgery.

I think for those with a family history of Bicuspid valve it is likely the cause of the condition is genetic and is coupled to a connective tissue problem. BAVD experts dont think there is a single cause of the condition -- in some people BAV might arise in early fetal development due to irregularities in fetal blood circlation. The question then is why is it more prevalent in men than in women? Havent found a satisfactory answer in the literature yet, I am sure they are working on it though.

Burair

 

[Wise]

Wise,

I had "ocular disturbances" for atleast 3+ years before surgery -- had a translucent curtain in the lower peripery always to one side or the other ( I think it was the right side ?? ) anyway I havent had this in the four months since surgery and am convinced that my aortic stenosis had something to do with it -- it might even be useful as a sort of early warning system, the frequency of the disturbances had increased with time before surgery.

I think for those with a family history of Bicuspid valve it is likely the cause of the condition is genetic and is coupled to a connective tissue problem. BAVD experts dont think there is a single cause of the condition -- in some people BAV might arise in early fetal development due to irregularities in fetal blood circlation. The question then is why is it more prevalent in men than in women? Havent found a satisfactory answer in the literature yet, I am sure they are working on it though.

Burair

Hello Burair, your comments, and those of everyone else here, keep adding more clarity to my understanding of my condition. It is good to know the actual corellation of previous & long standing symptoms to our heart/valve conditions.

Wise

 

[Wise]

Wise,
You definitely would be interested in the Cedars-Sinai thoracic aortic surgery website (I think the link is www.csmc.thoracic.org -- if that's not right, I'll post it when I find it -- or if Tobagotwo is watching, I bet he can help) and the www.bicuspidfoundation.com website. Bicuspid disease is not just a valve defect. There is a connective tissue diorder associated with it, similar to Marfan's but not as severe. Many people with BAV or BAD (bicuspid aortic disease) are short, like me. My grandfather, from whom I'm sure I inherited this, was of modest height also. A lot of BAD patients (not me) are very athletic and well-built. There is no particular association for BAD patients with the tall, slender physique often seen with Marfan's. But there are often physical problems in addition to the valve. I chose a surgeon with expertise in Marfan's for my second operation because I wanted somone who would know how to handle very fragile tissue.

Hi Rachell, thanks for the info. That's very helpful; another piece in the puzzle. I found the website under www.csmc.edu/ and was already referred to bicuspidfoundation.com. I read at csmc.edu that if you have BAVD that the ross procedure may not be a good idea because of connective tissue concerns with the pulmonary valve eventually causing it to fail in that position. My wording may be off there, but if I get to the point of surgery I will certainly discuss this with my doctor and surgeon.

 

[char2mar]

Hi Rachell, thanks for the info. That's very helpful; another piece in the puzzle. I found the website under www.csmc.edu/ and was already referred to bicuspidfoundation.com. I read at csmc.edu that if you have BAVD that the ross procedure may not be a good idea because of connective tissue concerns with the pulmonary valve eventually causing it to fail in that position. My wording may be off there, but if I get to the point of surgery I will certainly discuss this with my doctor and surgeon.

Wise;

Your childhood sounds very similar to mine and my twin sisters. We both have BAVD. Even though we both loved sports and tried out for everything we never had the stamina to excell at any sport. I remember hitting the wall sooner than most kids. I would over heat and my face would turn purple in color. (Not very attractive on a red head). I also never sweated. My chest would burn and my heart would beat irratically. Because we have a very thick head of hair my mom always thought that we over heated becasue of our unusally thick hair. Every summer she would take us in for a pixie cut...in hopes that we wouldn't over heat in the summer. To this day if I over exert myself I turn fifty shade of purple. My stress test came back negative for CAD but it said that my heart fatigued unusually sooner than it should for someone my age. Valve problem???or just out of shape???? That is the question. I was instructed to walk 5 kms a day to build up my stamina. Last weekend i went on a 10km hike in the mountains. 3 days later I ended up in the ER with severe chest and neck pain. EKG came back normal. So did the x-ray. I thought for sure I was having a dissection of the ascending aorta as it is dilated/ Diagosed as probable pericarditis and was put on IV cortisteriods. It worked to some extent but the pain in my chest and neck is starting to come back in full agonizing force. I went to my PCP today and finally, along with the ER report they decided to refer me to thoraxic surgeon.

I also get migraines and that funny aura that goes along with it. Sometimes I get that fuzzy aura and I can't see in that eye for about 10 to 15 minutes...drives me nuts...then it magically goes away. When I was 36 I woke up one day and could not read any fine print....my eye sight changed over night. I am so far sited that I have to wear glasses all the time or my eyes tire out quickly. Interesting to know if this is related to valve disease. I also have mitral valve reguritation...but no prolaspe.

Another thing that recently came up is thyroid disease. I am being sent to a endocrinologist too. Looks like I may have Hasimotos...does anyone out there have thyroid problems too...just wondering???

Char

 

[Wise]

Char:

It sounds you like you had a harder time of it, overall, than I did, as a child. I definitely identify with the "hitting the wall sooner than other kids." Of course, as a child you accept this "lack of stamina" as normal and don't know you're hitting a wall, you just think you don't measure up. Maybe I should speak for myself here because that's how I felt anyway.

One thing in which I had an advantage over you is the sweating. I sweated profusely. Sounds like that may have been a good thing for me.

I've never had any thyroid problems, so I can't address that.

Wise Smith