Aortic root enlargement/Marfan

Hello, and thanks for much for reading this!!

My 21-year old son was diagnosed with Marfan Syndrome at age 6. He has been on beta-blockers since that time. During his childhood and teen years, he had severe physical restrictions and had MVP as well as a dialated right ascending aorta.

At this point in his life, the only symptom he sees an enlarge aortic root. It is enlarged at just under 4 cm. He has no joint pain. His breast bone is only slightly protruded. He does have sublixated lenses, but his vision is just fine with glasses. He's tall and thin, and his arm span is only a bit more than his overall height. In other words, the Marfan is not very severe.

I am concerned because the doctor has lifted all physical restrictions...just recommended that he gets a yearly scan and his blood pressure is monitored. My son is also staying on his medication- 50 mg of Tenormin in the morning, and 25 at night.

. It was "hammered" into our brain so much when he was a child, and to have no restrictions now is really hard to understand. We cannot get a second opinion because our insurance won't cover it.

Specifically, I am worried because he wants to join the Army, and it looks like they will let him pass the medical inspection. I don't want his aorta suddenly blowing up, or his eyes popping out because one doctor made a mistake and then the army pushed him too hard. I don't want to seem like an overbearing mom, but I am really scared.

Do you have any thoughts?

Thank you so, so much!!!

[curmudgen]

Have you looked at web sites/support groups...found this one -

https://www.*******.com/search/?query=Marfan%20syndrome&ref=tag

[nickppatel]

Your son's doctor sounds like a goofball, and that's the nicest word I can think of.  Lifting all physical restrictions for a Marfan patient is ludicrous, particularly when the aortic root is already close to the 4cm threshold.  I strongly suggest a second opinion from a cardiologist who also happens to be a Marfan expert, eg, at a high-volume university hospital.  You can get a list of docs from the National Marfan Foundation - just contact them.

I would be hesitant to put my son in the Army if I was in your shoes.

Finally, you sound like you and your doctor are unaware of the most important breakthrough in Marfan research.  If there's one message you take away from reading my reply, it is this:  a knowledgeable, Marfan-expert cardiologist MUST evaluate your son to see if drugs called angiotensin receptor blockers (ARBs) are appropriate for him.  Numerous studies and at least one major clinical trial have shown their benefit in Marfan patients.  These drugs have been shown to significantly slow, halt, and even reverse aortic root dilatation in Marfan patients, as long as a SUFFICIENTLY HIGH DOSAGE is taken.  That last part is important.

You can read extensive discussions on the issue by visiting www. marfanlife .net /bb3 (remove the spaces).  Also, try Googling "losartan and Marfan."

Best wishes and God bless.
Nick