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Aortic Aneurysm

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Posted 2/15/2011 5:10 PM (GMT 0)
Let me say first that I really enjoyed reading this forum. I'm a 53 year old guy with a good health history. Normal blood pressure, high cholesterol (but great since statins 4 years ago). I've always either jogged three or four times a week and used to play a grueling weekly game of full court basketball. I tore my knee meniscus and have given that up. My older sister recently went through the aortic aneurysm/valve repair procedure as did my 23 year old nephew. Their doctors recognized a family predisposition and ordered all of us (lot of sisters and one brother) to get screened.

My results came back with a 4.7 cm ascending aortic aneurysm. The recommended screening once per year. That didn't sit well with me and I call and discussed it with my primary care doc (I'm on an HMO and everything goes through him...btw, he's a good guy and seems to really listen to me when I voice concerns. Anyway, after talking with him about the long followup scan schedule, he called me back and said that he wanted me to have a consultation with a cardio vascular surgeon. They would most likely do some hd scans and go from there.

I'm now sitting here thinking that I may want to get my referral to a cardiologist and if and when the repair is indicated, try to get into the Cleavland Clinic (my sister and nephew both raved about their experience there).

What do you guys think? Should I go see a local cardio vascular surgeon or a local cardiologist? If I go to a local cardio vascular surgeon, have I eliminated my chance at the Cleavland Clinic?

Thanks everybody!

[*Just added Aortic Aneurysm to the Subject so members would know what your thread was about. - C2]

I changed up your subject line a bit. 

Post Edited By Moderator (stkitt) : 2/17/2011 7:44:14 AM (GMT-7)

Posted 2/16/2011 5:08 PM (GMT 0)
Even HMOs allow for a second opinion prior to surgery so seeing a local SHOULD NOT prevent you from going to Cleveland Clinic for any surgery you might need.

AAAs are scarey, worrisome things. I would think that a good web search should bring up some info and data on when the size of an AAA gets worrisome and/or should receive closer observation or preventive care.

For instance: I was found to have a 4 cm simple ovarian cyst on one ovary at 62 years of age and way post menopausal. My family doctor immediately referred me to an ob/gyn. I immediately hit the web. There wasn't a whole lot of info on post-menopausal cysts except "take them out". 4 cms seemed to be the maximum size limit for just monitorng. I did manage to find two references to monitoring a simple post-menopausal cyst up to 8 cms.

The ob/gyn, of course, immediately said it has to come out and referred me to a local gyn onco. Meanwhile, thru a web search I found a gyn onco at CC who has a special interest in gyn problems in women w/Crohn's disease (I have had Crohn's disease for some 30+ years). I was given a timely appointment w/him and he concurred that we could wait until 8 cms w/periodic monitoring. His suggestion was ultrasounds at 1 month, 3 months, 3 months, 6 months, 6 months and yearly thereafter as long as it remained a simple cyst, wasn't growing, caused no symptoms or until it reached 8 cms.

Its been six years, that cyst is still there, its still a simple cyst causing no symptoms and is almost 8 cms. BUT I'm now being told by a marvelous Mayo gyn onco that we can probably keep monitoring up to 10 cms but after that there is too much risk of artifacts w/the ultrasounds.

One of the reasons the doctors are willing to hold off is because they and I know that I have a high grade partial obstruction from an old Crohn's resection that is going to cause the need for another resection and they are willing to respect my wishes to wait and do both surgeries at the same time.

But the point is - YOU need to understand AND BE COMFORTABLE WITH the size of that AAA and how long you are comfortable living w/it before having it repaired. YOU are the one to endure the consequences - or benefits - of any decision made regarding your health care.

Good luck and God bless. I apologise for the length of this reply.
Posted 2/16/2011 5:27 PM (GMT 0)
Wow...what a nice reply. I agree with you that the internet (while terrifying) is the only way to really get a grasp on the malady you're faced with. I guess I need to get into the proper mindset; one of education and methodical strategies on my approach. My first step is to get to the local cardio vasc. surgeon so that he can really fill out the details on my specific case. At that point, I'll try to find out who can best repair (or monitor) it.

Thanks for your post...God bless you, yourself!
Posted 2/17/2011 2:52 PM (GMT 0)
Good Morning Virginia_Bill


 I'd like to extend a warm welcome to you on your first visit to Healing Well!

I have found the support, validation and encouragement that I receive here, to be so helpful and healing. I hope and trust that will be your experience as a member of the HW family.

I agree, what a great response from CrohnieToo.    A second opinion is within reason so do advocate for yourself and remember the world is a better place because you live and serve within it.  Take care of you.

Gentle Hugs to you,

Kitt
Posted 2/17/2011 3:01 PM (GMT 0)
Thanks! What a great site. Like most folks who get a scary diagnosis, I spent about 48 hours googling and got back results that ranged from terrifying to "matter of fact." This site really stands out. I've got my appointment and will see how it develops.

Thanks again..
Posted 2/18/2011 5:24 AM (GMT 0)
Glad to hear you've got that appointment!! Keep us up to date on how you are doing!
Posted 3/28/2011 3:41 PM (GMT 0)
Ok, followup on my last post.  I went to a good local cardio vascular surgeon.  He said that he always started by having ct scans done (he said echo cardio's were more interpretive).  I had it done last Monday.  He called this morning and told me that they had made a mistake on the original diagnosis and that I DID NOT have an AAA.  Rather than a 4.7 cm, my aorta was more like 3.3.  Needless to say, I said a number of prayers of thanks and have decided to use this as an opportunity to lose some weight and take better care of myself.  I will continue to visit healingwell.com as well, because, after spending enormous amount of time on the internet looking at this condition, this site clearly emerged as one of the best.
Posted 3/31/2011 4:14 PM (GMT 0)
Whew! Goooood news, Virginia Bill!!! The mis-Dx wasn't all bad tho if it has inspired you to take better care of yourself, right? We lost one of my bros-in-law to AAA. It wasn't pretty. Or pleasant. They lost him on the table, resucitated him and brought him down to CICU for us to make the decision. Thankfully, my bro-in-law made the decision for us whilst we were trying to locate his sons. It is shocking how fast a burst AAA can end a person's life.
Posted 3/31/2011 4:46 PM (GMT 0)
Wow. What a tragic story. Very sorry for your loss. Yes, thinking about the fact that my young nephew and sister had it, going through the procedures to fix it, really made me feel blessed. And it's true, I'm trying to take better care of myself with respect to diet and exercise. Anther good side was that I discovered communities like this for people with frightening medical issues. I've bookmarked it and will use it in the future. Thanks again...
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