Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Question for all the Hypermobile ASers

First I wanted to say hi to everybody. Med school has been keeping me too busy to post. I finished my psych rotation and am now on neurology & loving it. I have no life but I am living all my dreams so who am I to complain?
...That said...
I had my yearly cardiology appointment on Friday so he can tell me that I am uptight and under medicated. In addition to AS I have Ehlers Danlos Syndrome, presumed classic type, and my last year my geneticist sent me to get my heart checked out. Last year on echo they found a small ventricular septal defect and something else that he was vague about. Said it was no big deal and to follow up in a year. Fast forward about 14 months. I probably would have skipped the appointment but I had the day off anyway. I hate getting echo's. They hurt! While I was at my cardiologist's office I finally got a copy of last year's results. Turns out I have a dilated Sinus of Valsalva out of proportion to heart size (read as aortic aneurysm).
So I looked into it and sure enough both EDS & AS predispose patients to aortic root aneurysms. Would like to hear if anyone else has had similar experiences. Hope you are all doing well.

My mother had an aneurysm on her ascending aorta had to have large portion replaced with a dacron tube. Her father has one also but he is now 90 so they are not going to repair it. Don't know if that applies?
Darrel

I had a cerebral aneurysm - coiled - dont know if that is applicable

JennyF

Had an aneurism of sonme kind, but no details. It was caught on a pre-op assessment. Never followed up - following up costs money don't'cha know! Myself? I'd like to 'know'. But fat chance that.

Molly C (France)
Keeping on Keeping on (yea, man... )

Runnergirl, no aneurysms, but I can tell you that if an echo is hurting you it is mostly fault of the tech. I have had quite a few, and only one that really hurt, most are painless. Some think they have to push hard to get a good read.
J.R.

Thanks guys. Talked to my cardiologist today & he said let's meet again in 6 or 7 months. Since we were at yearly follow-ups there must have been some change. He tends to be a bit evasive so I won't know details until I get my echo report. But hey that is at least 6 months without open-heart surgery so I am good with that!
Oldtimer- I agree with you about it being the tech's fault. I have had the same tech for both studies and this time she was much more gentle.
Molly C-yes it costs money but think of all the money you won't get the chance to make if it ruptures!
Mulehound-Did your mom have EDS of AS? I am trying to get an idea of how much they lower the surgical indications. In normal population anything over 5.5 cm is an indication for surgery or any growth 0f >50 mm in one year. I know that they will lower the threshold for EDS patients but I am not sure how low.
Freeman-how large was your anuerysm? Was it located on the anterior communicating artery? Were you symptomatic?

Sorry for the late reply. I had to go through some of moms stuff. Yes on eds, but only mildly affected. Hers was 9 cm. They found it and could not believe she was alive. Surgery three days later.
Darrel.