BAV, Connective Tissue Disorder and MDs

[Rick]

In March of 2008, I was diagnosed with BAV, moderate severe aortic regurgitation, mild mitral regurgitation, mild tricuspid regurgitation, mild dilatation of the ascending aorta and aortic root, and the borderline left ventricle size. I was told I shall be monitored in order to determine when I will need surgery. Three years ago, all I had was mild aortic regurgitation, an "innocent murmur" it was called..."dont worry about it... you worry too much etc."

I am 38 years old and the youngest person in my family died at 85. All grandparents died after this. No other major illness run in my family except for bladder cancer. No heart disease either. I do not drink, smoke, never drugs and am of normal weight (5'7, 150lbs, down from 170 lbs three months ago).

In addition to my cardiac problems, I have chronic prostatitis, interstitial cystitis, scoliosis, recurring gastritis and esophagitis, hip pain, migraines and recurring ENT problems. I just received bordeline blood sugar results too today.

I am very upset. I keep on getting stuff all the time and I wonder, if I am like this at 38, how will I be at 58 (if I get there)? I am already eating well, walking, reduced work hours from 14 to 6, sleeping enough etc. I can't help but feel angry sometimes...went through a sad and anxious phase first.

I had a few questions which I wanted to ask and see if any of you could help:
1. If you are BAV, did you ever get tested for connective tissue disorders? Is the mere presence of BAV a definitive marker of connective tissue disorder or did you get tested for something else and this is somehow confirmed via bloodwork?

2. What are the exact tests to be done to check brain aneurysms? I read Bicuspid Foundation and it said to test for this but in Latin America, BAV as a connective tissue disorder is too new a concept and none of my MDs believe that BAV is a connective tissue disorder though my primary GP suggested checking for connective tissue disorders (without any mention of BAV as a predisposing condition), only because I have so many things.

3. Are there any really good articles that I could share with my MDs so that they would consider the possibility of BAV as a connective tissue disorder? Basic education from a source that would have credibility with an MD.

4. I read at Biscuspid Foundation to do 30 minute walks per day. What level heart rate are we supposed to be trying to get to? Anyone had this question answered. My cardiologist just said "dont worry about that, just go for a walk" but frankly, I wonder whether this does anything. Is this advise for someone older with BAV or any age? What is the mechanism whereby walks help (ie. direct impact on the connective tissue or BP effects) or is it just general fitness?


Thanks.

Rick

 

[pamela]

Hi, I don't have a pathology report from my aortic valve and root but my surgeon did report that I was genetically bicuspid. Some other signs on my chart that (if I could get my PCP to agree to a referral) I feel could be related to a CTD (connective tissue disease) are tortured arteries in my abdomen, gall bladder disease and stones, lax and damaged joints, astigmatism and myopic vision with pre-glaucomic high pressures in both eyes and I have a high palate and crowded teeth. On the mildly symptomatic end of things, sometimes in the cold I experience Raynaud's phenomenon (aka white finger) and I am always battling dermatitis and arthritis, almost everywhere.

Taken individually, it means I have bad luck, put together, I think it points to a tissue disease, but my doc seems to feel there's no need to contact a geneticist for testing. If I could find another doctor, I would. Family physicians are hard to keep here, though so you're not looked at very favourably if you flit from doc to doc.

 

[Rick]

Thanks Oaktree and Pamela. I have been at home sick and have no computer there so only posting now. I had hoped Arlyss had some insights on these subjects/questions.

I did go to CCF initially in March after a local echo showed 2-3+ aortic regurg...I was diagnosed as bicuspid there but no mention was made of connective tissue disorder. The surgeon at CCF told me that I will need surgery but that we can hold off a few more years probably, depending on how things go so I will be monitored there annually for now. My local cardio wants every 6 months.

After CCF and reading, I have pieced all my illnesses together and talked to my local MDs. I also have dermatitis too by the way Pamela. I went over all my medical background and found that I had a brain CT scan in 2005 because of tremors in my hand and diplopia following using Avelox (antibiotic) for some time and that things were grossly normal.

The thing with BAV is that it can cause so many different things and there appear to be few things one can do about them, but I do concur Oaktree that the most important is the cardiac issues. I do think I have a connective tissue disorder but do not know how this is tested for and my local MDs do not associated BAV with connective tissue disorders and dismiss my comments on the subject (since they are the MDs).

 

[Mary]

I just wanted to mention, Rick, that my uncle had severe scoliosis, and that is commonly considered to be a hallmark of the connective tissue disease.