SCARED Now re the Heart Test Results Help!!!

Discussion in 'Fibromyalgia Main Forum' started by Cromwell, Feb 23, 2006.

  1. Cromwell

    Cromwell New Member



    sO NOW i HAVE BEEN SCANNING THE WEB AND SCARED MYSELF.

    The heart doc said that heart looked good on the TEE test except for a mildly dilated ascending aorta. DH asked her was it aneurism and she said No, thought it was connective tisue disease.

    I would appreciate any comments/knowledge. My PA told me stop worrying, that she would have kept me under observation, and mildly was not a threat.

    Thought others may have had this dx.???

    Love worrywart Anne C
  2. claudiaw

    claudiaw New Member

    I really don't have any info, just want to say, if your doctor's aren't worried I wouldn't worry.
    The stress is not good for you.
    I know we all search the net looking for answers, but if you are like me you'll end up with every disease there is.:)
    Mostly, I wanted to bump this up, I'm sure there is someone who can help.
    Sorry I'm not much help!
    Claudia
  3. Pianowoman

    Pianowoman New Member

    I understand your worry; we always worry about our hearts. I would listen to your PA, though. If it was really serious, they would be taking action.
    I don't have the diagnosis but have worked as a nurse in Cardiology. Likely, they will just monitor your symptoms and do something more if they get worse.
    Try to relax; you've been through a lot lately.

    Kathy.
  4. rockyjs

    rockyjs Member

    Anne,

    Did the doctor specifically mention Marfan syndrome? This would be the most likely connective tissue disorder. Here's the section on cardiac involvement from the National Marfan Foundation's website. If your PA doesn't seem concerned I think I'd get another doctor so you can stay on top of the monitoring and treatment if necessary.

    Jan


    Cardiac Concerns

    Prepared by the NMF Professional Advisory Board

    What is the Marfan syndrome?

    The Marfan syndrome is a genetic disorder that affects the body's connective tissue. It can affect the eyes, skeleton, blood vessels and heart. More than 200,000 Americans have the Marfan syndrome or related connective tissue disorders.

    How is the Marfan syndrome diagnosed?

    The diagnostic evaluation for the Marfan syndrome should be performed by physicians experienced with the condition. The evaluation should include:


    Detailed medical and family history.

    Complete physical examination.

    Thorough eye examination by an ophthalmologist, who uses a slit lamp to look for lens dislocation after fully dilating the pupil.

    Electrocardiogram (EKG) and an echocardiogram, looking for involvement of the cardiovascular system that is often not evident from the physical examination.
    This series of steps is important, not only in determining the diagnosis, but also in detecting problems that require or long-term management.

    What are the cardiovascular concerns of people with the Marfan syndrome?

    Dr. Antoine Marfan did not recognize the cardiac characteristics of the Marfan syndrome when he identified the disorder in 1896. However, it has become apparent in the last 40 years that the most severe complications of the Marfan syndrome affect the heart and blood vessels. At least 90 percent of people with the Marfan syndrome will have heart involvement. For this reason, it is imperative that people with the Marfan syndrome and their healthcare providers become well-informed about the cardiac concerns of the disorder.

    In most people with the Marfan syndrome, the most serious problem is enlargement of the aorta, the main blood vessel that carries blood away from the heart. When the aorta enlarges and stretches, it becomes prone to an aortic dissection (a tear between its layers). If the aorta does dissect, it will generally cause severe pain in the center of the chest, abdomen or back, depending on where the dissection occurs. If the aorta tears, it is a life-threatening problem that requires immediate surgery and medication.

    Aortic enlargement in patients with the Marfan syndrome may not be recognized for many years because it may not cause any symptoms. However, aortic enlargement can allow a leak of blood back into the heart. This may cause shortness of breath during normal activity. It can also cause a forceful heartbeat.

    Another concern is mitral valve prolapse, which is characterized by abnormal "billowing" (motion) of the mitral valve during the heart's contraction. Mitral valve prolapse is usually asymptomatic; however, it is sometimes associated with an irregular or rapid heartbeat. Leakage of blood across the mitral valve also could cause shortness of breath.

    Are there preventive measures that can reduce enlargement of the aorta?

    Medications to lower blood pressure and decrease the forcefulness of the heartbeat are often recommended. These will prevent or slow down progressive enlargement of the aorta and decrease the risk of dissection. The drugs that are usually used first are called beta-blockers. Several studies have shown that beta-blockers slow the rate of enlargement of the aorta (N Engl J Med 1994;330:1335-41).

    In people with depression or asthma, or in those who have side effects from beta-blockers, such as diarrhea, a calcium-blocker, such as verapamil, is recommended. Verapamil also lowers blood pressure and makes the heartbeat less forceful.

    To minimize stress on the aorta, it is also recommended that individuals with the Marfan syndrome refrain from vigorous exercise or heavy lifting.

    When is surgery necessary?

    If the aortic diameter increases rapidly or reaches critical size, between 5.0-6.0 cm, elective composite graft repair surgery is recommended. This involves replacing the aortic valve and the portion of the aorta closest to it. The survival rate for elective surgery is 98-99 percent. Surgery is recommended at this aortic diameter because the risk of dissection is quite low when the size is smaller and a patient is taking beta blockade, and is not balanced by the risk of surgery and the additional care needed for an artificial heart valve. (J Card Surg 1994;9[Supp 2]:177-181)

    The best time to have aortic surgery depends on how rapidly the aorta is enlarging. The aortic enlargement and history of aortic dissection in other family members with Marfan syndrome is also a factor. At present, physicians must make this judgement on a case by case basis.

    It is recommended that people with the Marfan syndrome have aortic surgery performed at hospitals where the physicians are experienced with the Marfan syndrome.

    What can be expected after surgery?

    Aortic surgery generally requires 5-10 days in the hospital after the composite graft repair. Then, a period ranging from several weeks to several months at home is needed to recover. After aortic surgery, patients must take blood thinning medication. They also need to take antibiotics by injection before dental work, and in other situations in which bacteria could enter the blood stream. (Guidelines for Endocarditis Prophylaxis for People with Marfan Syndrome Who Have Had Cardiac Surgery, NMF Professional Advisory Board, Oct. 2002).

    Are additional surgeries necessary?

    Elective composite graft repair surgery has been widely done for about 15 years. Most people who have elective graft repair have not needed additional surgery (Circ 1995;91:728-733). If someone already has an aortic dissection before undergoing aortic surgery, the likelihood of needing additional surgery is greater. It is usually not possible or advisable to correct the entire portion of the aorta that has been involved in an extensive dissection in one operation.

    This is because the surgery would take too long. In addition, different portions of the aorta may have to be approached through different incisions.

    How are the aorta and heart monitored?

    The initial evaluation of someone with the Marfan syndrome should include an echocardiogram showing all the structures of the heart, including heart valves and the aorta close to the heart, and an electrocardiogram (EKG). The part of the aorta away from the heart also needs to be evaluated. In some centers with special equipment and a lot of experience, these other areas of the heart may be seen by echocardiography.

    The echocardiogram needs to be done by a skilled technician using one of the more advanced echocardiographs. There are standardized recommendations for taking measurements of the aortic root and the aorta near the heart.

    If portions of the aorta cannot be visualized by echocardiography, either MRI (magnetic resonance imaging) or CT(computed tomographic scan) can be used. These have the advantage of showing all segments of the aorta. However, the MRI requires getting into a noisy, somewhat claustrophobic machine and CT scanning involves the use of some radiation and x-ray dye, to which some people may be allergic.

    If there is concern about the possibility of an aortic dissection, either a special technique of echocardiography called a transesophageal echocardiogram (TEE), an MRI or a CT can provide the details, including how extensive it is and where blood flow enters and leaves between the layers of the aorta. The TEE technique is also useful in individuals who have artificial mitral valves in place. In these individuals it is difficult to see the area behind the valve from the surface of the chest, therefore it may be important to get a closer view from behind the heart.

    An echocardiogram is recommended for people with the Marfan syndrome every six months until stability of aortic size is documented, and every year thereafter.

    What is done for children with the Marfan syndrome?

    There is no universal agreement on drug therapy for children. Many physicians would use the approach outlined in this brochure for both children and adults. These doctors believe that treatment should begin as early as two years of age if the child has an enlarged aorta, and soon after that if the aorta is normal in size. Some studies show that children may have greater benefit than adults from taking beta-blockers or calcium blockers to reduce the stress on the aorta.

    Are there any special concerns for pregnant women with the Marfan syndrome?

    There are several important issues for women with the Marfan syndrome who are considering having children. First, there is the 50 percent chance that any child of someone with the Marfan syndrome will also have the Marfan syndrome. Second, the stress of pregnancy may cause rapid aortic enlargement, especially if the aorta is significantly enlarged before pregnancy. The risk of dissection of the aorta is low, but not zero, in women with the Marfan syndrome, who have a normal aortic size. If the aorta is even slightly enlarged, the risk of dissection of the aorta is higher during pregnancy and increases as the aorta enlarges.

    Women should be counseled about the potential risks. Beta-blockers, if prescribed previously, should be continued during pregnancy. Taking beta-blockers during pregnancy has not been associated with any known increase in birth defects. Echocardiograms should be repeated in the first, second and third trimester of pregnancy. If there is a progression of aortic enlargement or aortic regurgitation, women may be hospitalized or put on bed rest at home for protracted periods to reduce blood pressure.

    The decision on the method of delivery for a woman with the Marfan syndrome depends on individual circumstances. In most cases, a relatively rapid vaginal delivery is not more stressful than a Caesarian section. However, if the labor becomes quite prolonged, then a Caesarian section may be recommended.

    What is the life expectancy of people with the Marfan syndrome?

    Advances in the use of medication and surgery have dramatically increased the lifespan of people with the Marfan syndrome. An average life expectancy in 1972 was about 45 years. The average life expectancy now is about 70 years (Am J Cardiol 1995;75:157-160), providing great hope and optimism to people with the Marfan syndrome and their families. But, only through increased awareness about the disorder, earlier diagnosis and proper treatment can people with the Marfan syndrome expect to live normal lifespans.

    Why is it important for people with the Marfan syndrome to be familiar with the cardiac concerns of the disorder?

    Most healthcare professionals have had little experience in treating the Marfan syndrome. Therefore, it is very important for anyone with the disorder to be highly informed about their symptoms, test results, medications and details of treatment. It is likely that the patient will know more about the condition than most healthcare providers he or she encounters.
  5. hugs4evry1

    hugs4evry1 New Member

    You're not a worrywart, you've just had a very rough week!!

    Try to take a deep breath....and another one.

    In my opinion, you're better off than you were a week ago because anything that they may find was already going on in your body but you probably didn't know it.

    You're getting thorough exams from top to bottom and inside and out done....we all know there's something going on in our bodies, but it's usually hard to find someone to listen.

    Whatever they find is...in a way a good thing....now it can be recognized, dealt with and looked after. Things you didn't know about may be found, but nothing changes but the test results.

    I know I tend to look at things differently but there are some positives here....and you're one of them!!!!

    Hugs,

    Nancy B.