Marfans Syndrome

Trainee Blebber Joined: 08 Oct 2012 Posts: 12

Hi, I just had a question about Marfans Syndrome as Wikipedia/Google searches don't really produce anything that isn't "doomsayer-esque".

I had surgery (Pleurodesis) for recurring SP, 2 collapses that sent me to hospital, then a pretty constant minor collapse until I had surgery in January after almost a year of a partially collapsed left lung.

During all of this I have had quite a large amount of X-Rays and a CT scan. During the pre-admission at hospital before the surgery they did ECG/X-Ray/Blood tests, and after my first SP I saw a respiratory specialist who was my doctor during my first hospital stay.

I have a minor case of Pectus Excavatum (I think is a little worse than minor) I get the minor from one of my X-Rays the Radiologists notes referenced it as minor. Anyway, so I have the Pectus Excavatum, I am tall and slim and I have some curvature to my spine. These are all symptoms of Marfans along with a hefty list of other possible symptoms (i am skeptical)

My question is, after reading about Marfans and how it can affect the heart etc.. and having been looked at (not officially "tested" for Marfans") also having had X-Rays where heart size is normal/ECG before surgery would they have noticed any problems with my heart? or could it have been missed as they were simply treating my SP..?

Thanks for reading sorry if I was babbling.

New Member Joined: 07 Feb 2008 Posts: 9

Sorry you had to go through all this... your post sounds like it could be my sons. He had 3 collapses, Vats, Mechanical Pluerodesis. It was his general Dr. here at home (his happened away at college) that was more interested in finding a possible cause and Marfans was on her list since he has some of the characteristics. The main thing was the ultrasound of the heart (can't remember the name of the test), which looked fine.
He decided against genetic testing for Marfans for now (since his heart was ok). Reading up on genetic testing it doesn't necessarily prove anything plus he didn't want it to affect his chances of ever getting medical insurance, etc. since he is so young. It's been 5 yrs and he's doing well (graduated from college this past May!), he has the few false alarms and pains but they all pass, and other lung is ok so far.
and you weren't babbling... and even if you were this is the place for it! and this is a great place to find some answers and read old posts of people who have gone through this!

Trainee Blebber Joined: 08 Oct 2012 Posts: 12

Thanks for the reply, im just really sick of seeing doctors at this point, I'd rather avoid it if possible, heh.

Fortunately I am from Australia so I paid about ~$50 AUD through the whole ordeal.