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Marfan Syndrome: Challenges in Diagnosing and Treating

Thu. Oct 22, 2015 at 12:00 pm CDT

Recorded Oct. 22, 2015 Marfan and Thoracic Aortic Aneurysm Clinic directors Juan M. Bowen, M.D., internist and consultant in cardiovascular diseases, and Alberto Pochettino, M.D., cardiovascular surgeon, discussed Marfan syndrome symptoms, diagnosis, and treatment options, including optimal timing for thoracic aorta repair.  A live question and answer session followed the presentation.

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Should a marfan syndrome and vascular Ehlers-Danlos Syndrome and has PVL and is highly fuctional CP. Be a good candidate for aorta repair?

Posted Thu, Oct 22 at 1:03pm CDT

The webinar has concluded. In the following week we will work on answering your questions that were not addressed during the webinar.

Posted Thu, Oct 22 at 1:02pm CDT


m.camp5263 wrote:

Also from previous post...once dissected and repaired, life expectancy and ADL?

Posted Thu, Oct 22 at 12:59pm CDT


jeannedunn wrote:

Is it possible for a Marfans patient to NEVER haave to have thoracic aorta repair? My son's aorta measures out at approx. 45 mm, but has not grown since he began a combination of attenolol and Losartan.

Posted Thu, Oct 22 at 12:58pm CDT


m.camp5263 wrote:

During surgery for AVR/MVR replacement/repair, and the marfan wasn't diagnosised earlier, and the aorta ruptured during surgery(and yes, she survived)...what type of doctor will be best for her now, what can she expect, and there is a spinal problem dected, [...] View full text  

Posted Thu, Oct 22 at 12:58pm CDT


randiealf wrote:

Can you speak further about the reduced life span for marfan patients who have had dissections and had most of their aorta repaired?

Posted Thu, Oct 22 at 12:55pm CDT

Anonymous wrote:

What are the most important precautions and information to include in a school health care plan for a child with Marfan?

Posted Thu, Oct 22 at 12:53pm CDT

Anonymous wrote:

Can it be passed from grandparents if the parents don't have it?

Posted Thu, Oct 22 at 12:52pm CDT


robbocks wrote:

Does atherosclerosis present a heightened risk for Marfan patients?

Posted Thu, Oct 22 at 12:50pm CDT

Where is the back pain?

Posted Thu, Oct 22 at 12:48pm CDT

What are the spinal and neurological impacts of Marfan Syndrome?

Posted Thu, Oct 22 at 12:46pm CDT


Serene E wrote:

There hasn't been a medication to replace Coumadin yet? The blood tests and adjusting medication is a lot of trouble.

Posted Thu, Oct 22 at 12:43pm CDT


Maya wrote:

What are the chances of Aortic issues occurring for a 5 year old who has the genetic mutation with no family back ground but a loose lens in one eye. in usual cases? currently there are no issues. Parents don't [...] View full text  

Posted Thu, Oct 22 at 12:41pm CDT

Anonymous wrote:

My daughter is 12 years old. Can she still participate in sports and activities with her friends?

Posted Thu, Oct 22 at 12:35pm CDT


ahashemi wrote:

Dr. Deyle, My daughter has dislocation of lenses and we have gone through testing including genetic testing to see if it is related to Marfan Syndrome. Cardiology came back negative, she has no issues for now. However her FBN1 gene [...] View full text  

Posted Thu, Oct 22 at 12:35pm CDT

Anonymous wrote:

What should I do if my insurance won't cover genetic testing?

Posted Thu, Oct 22 at 12:34pm CDT


Sara wrote:

When will the aortic enlargement show , at what age does it start to show?

Posted Thu, Oct 22 at 12:32pm CDT


robbocks wrote:

How does pectus excavatum factor into the risk of aorta dissection? What are the risks/benefits of repairing the pectus excavatum?

Posted Thu, Oct 22 at 12:31pm CDT

If someone is diagnosed with Vascular Ehlers-Danlos Syndrome can or should the person have aorta repair?

Posted Thu, Oct 22 at 12:29pm CDT

Can you talk about normal growth/BMI assessment for Marfan pts? I am a dietitian who has seen some under wt Marfan pts.

Posted Thu, Oct 22 at 12:27pm CDT