Ascending aortic aneurysm with connective tissue disorder

Recovering well from heart cath to address the blockage in lower heart. Main arteries clear but small vessel disease is fairly wide spread. Three branches are between 60-90% blocked and one in addition to blockage had second aneurism. The blockage is at the junction of small vessels and main arteries, so it will require open heart surgery at some point. The aortic aneurism now measures 47 mm up almost three millimeters since first echo two months ago. Hopefully just more accurate measurements and not growing that fast.

I find myself doing the same things that have been mentioned. Every time my chest hurts or I have pains in belly or upper back I get nervous. I am at a loss as to what to do. My kids are being brave but are constantly watching me and listening to see how my breathing is and if I sound winded. It seems as though I now have two problems. The aneurism and the blockage which can’t be fixed with stents. So I wait to have a heart attack or the dissection of either aneurism. Live life like you were dying is more truth than ever. I love my life and know that Jesus Christ is the Savior of all. In the end those are the real things that matter, love of God and loving others.

@wyomingmiller208 Looks like it’s been more than 3 years since you posted. Hopefully you got good answers and are doing well. Here’s my story. I’m a 63 year old woman. I started having spontaneous partial pneumothoraxes in 2005 that I thought was just a pinched nerve or a rib out of place. Imaging for the pneumothorax (someone finally listened to my lungs) in 2008 uncovered the ascending aortic aneurysm. Eventually I had a pleurodesis to “fix” the lung in 2009 after I had a particularly bad collapse. I’ve also had 3 hernia operations, a retinal tear, scoliosis, nearsightedness, sunken chest, and non-pregnancy related stretch marks. The neuroimaging of my spine was normal. I was sent to the University of Colorado Adult Medical Genetics Clinic for consultation in 2008 where I was evaluated for Marfans. The conclusion was that I had an “underlying connective tissue disease not otherwise specified” so I didn’t fit neatly into a box. The aneurysm had been stable at 3.8 cm since it was discovered. However, my most recent Echo shows it has grown larger to 4.1 cm. Originally I was told the magic number for me was 4.0 cm with the connective tissue disorder. I’m having a CT scan Friday to gather more precise measurements. It’s been a while since I’ve had one with contrast as I’m allergic so need to premedicate (steroids and Benadryl) to prevent a reaction. Not sure if size limits have changed in the last 18 years so I’m on pins and needles. Glad I found this support group. 🙂

@wyomingmiller208 The CT scan yesterday showed no change in dimensions so big sigh of relief. With my frequent partial lung collapses, I was sent by my PCP to the University of Colorado Hospital in Denver in 2008 where I met several times with Dr. Michael Taylor, the Director of Adult Clinical Genetics. I was sent out for additional evaluation of my eyes and my spine to look for other characteristics know to be associated with Marfans. There was a lot of collection of family medical history. My two children had EKGs and Echocardiograms to rule out familial thoracic aortic aneurism syndrome. Hope this helps a little. With you being in Wyoming, a trip to Denver would be feasible?