Do you have to take BP drugs or any other drugs after aortic surgery for the rest of life or you had abnormal BP before surgery? If aortic dilatition can be caused by many different things,like abnormal BP,marfans,various infections,old injuries,etc how can person know what caused aortic dilatation before surgery? Is there blood test for marfans?If yes what's the name of test or tests?Thank you.
There is probably a genetic test for marfans but this costs thousands of dollars. It is better dianosed by the symptoms.
Very tall usually above 6'5
Abnormaly long arms and legs (usually when you extend your arms out horizontally the distance from middle finger to middle finger is the same as your height in marfans the distance will be greater)
loose joints and frequent discolations
hypermobility
detachment of the lens of the eyes
aneurysms
My BP was slightly elevated at 130/90 prior to my surgery. My PCP has records going back 5+ years that show normal BP of 120/80, my elevated BP was likely due to the stress of events. However, that's not entirely the reason why they want you on a beta blocker. Beta blockers change the very nature of your heartbeat so that the peak arterial pressure is "smeared out" over a longer period of time, and they also reduce your resting and maximal heartrate. The reduction in the peak pressure lessens aterial stress - from what my cardiologist says, a lot of people could benefit from being on a beta blocker.
As for knowing the causes of an aortic aneurysm prior to surgery, in some cases, a diagnosis of Marfan's or Ehlers-Danlos is fairly obvious, and can be backed up to some extent with genetic testing. With regard to the test, I don't know the name of it, it's something that you can get ordered by a geneticist if they think you may have Marfan's or E-D.
abbs, your family's situation sounds somewhat similar to ours. Because of my aneurysm, we got an echo on my 6 year-old son (my 8 year-old daughter has one scheduled, too). My son's aortic root was also said to be just above normal range, no other significant findings. We are working with a geneticist, so far, it does not appear that we have either Marfan's or E-D. My unusual characteristics are severe myopia (-10 diopters), my son is very thin, pale, and like your son, has low muscle tone. We are continuing tests, but from what I can see, I think we've got FAA. Like you say about your husband and son, we don't fit the picture, either.
BTW, while your husband is not yet where his cardiologist believes surgery is needed, it might be a good idea to start looking for a surgeon. As I said earlier, you want someone who has done hundreds, not dozens, of these kind of cases. You want someone who has seen it all and can react accordingly during the surgery. Let me know if you want my surgeon's name.
As you say, it's amazing to me that in spite of the relatively low number of aneurysm cases, that there is no screening for this condition in the general population. An echo can spot this condition early on, long before problems can occur.
Thanks sooo much for the info. My son's cardiologist keeps insisting that we should completely rule out Marfan's syndrome. My son has already been through so much with the muscle biopsy, tonsil surgery, hernia repair, and just physical therapy to catch his motor skills up to where they should be. My husband and son are both significantly far sighted. MY son's cardiologist said that there is a test the opthamologist can do to test for marfan's syndrome. I think he is just grasping at straws becasue he does not have a full understanding as to why his root is dilated just above normal range. He is a good man and good doctor but I just do not see any signs of Marfan's. My son is short and stocky as well as my husband. I don't think my husband has ever broken a bone or had a dislocation. He played football etc. in high school. My husband is seeing a surgeon in Lima, Ohio who seems pretty knowledgeable. He said when it comes time he will replace the whole valve, root, and arch. He indicated that this would hopefully be a once in a lifetime procedure and seemed fairly confident in himself. I would be interested in your surgeon's name if you don't mind just to have on hand.
thanks so much and keep me posted. I am not sure if it is safe to give an email address on one of these forums or not? do you?
You can email me at ***@**** . My surgeon's name is Dr. Vincent Gaudiani, he's in Redwood City, CA. He's done over 6,000 cardiac procedures, specializing in aortic and mitral valve repairs, replacements, and re-do's. He's done hundreds of various types of aortic replacements. A friend of mine recommended him to me, she ran heart/lung machine for him for over a decade and said he was the best cardiac surgeon she ever worked with in SF and LA areas. He did a mini-sternotomy on me (my scar is only 4" long and nearly invisible), and I was on pump for only 25 minutes.
As for the test for Marfan's your cardiologist is talking about, it's a slit-lamp test. A definitive test for Marfan's is if the lens of the eye has become "dislocated". There is a thin network of collagen fibers that suspends the lens, apparently, it's the same kind of fibrilin that is in the ascending aorta that gives it extra elasticity (to handle the peak pressure pulses during the systolic phase of the heartbeat). In older and most younger Marfan's patients, this network has broken down and the lens isn't attached, it's "dislocated". This test is very simple and only takes a few minutes. My son and I both had it recently, showing no dislocation.