Personal Stories: Ricky Flanders

Hello Brian,

My name is Rick Flanders, am 34 yrs old, of Asian heritage and I live in the San Francisco bay area. I stumbled upon your website and found it helpful. I was recently diagnosed by a cardiologist after an echocardiogram that my aortic root (ascending aorta) is severely dilated at 6.2 cm. I just had an MRA a couple of days ago and am awaiting the results. At this stage, I'm trying to figure out why I would have this condition as I am not marfanoid.

My primary care doctor was concerned that I may have Ehlers Danlos since I am double jointed in my fingers and elbows. But I don't have many of the characteristics of Ehlers Danlos (especially type IV), which are traslucent skin, big eyes, no ear lobes, and easily bruised. With Ehlers Danlos, of course, the risk of surgery is much much greater.

I am curious, did any doctor figure out what the cause of your condition was? Also, what were your symptoms before you actually had to go to the ER and had your ascending aorta grafted? Needless to say, I am very scared and anxious about all this.



Update: 9/21/2004:

Dear Brian,

It's been a long time since I last contacted you, and so much has happened. Anyways, I've been meaning to contact you for a while now, but this is the first time in a couple of months I've been able to get around to getting back in touch with you.

Well, thanks very much to you and your website (btw, I see that you've added so much to your website since I first stumbled across it - that's awesome!), David Liang, Sunny, Julie and Dr. Miller have been taking good care of me. Due to my HMO problem, David saw me gratis for the first visit in May and did an echocardiogram on me.

He and Sunny saw me after hours in their clinic and stayed with me for almost 3 hours after, analyzing me, informing me and answering all my questions. What a dedicated doctor and staff! The echo unfortunately confirmed that my ascending aorta (at the root) was around 6.3 cm. My hopes for a false reading from my previous tests at a different cardiology office was deflated. David and Sunny was so nice and caring that they helped me a lot to alleviate my fears.

My next step was to get my HMO to approve me to have the repair surgery done by Craig Miller. And boy, this was such a nightmarish experience that I don't ever wasn't to go thru again. After being jerked around and denied a couple of times by the HMO, and many frustrating phone calls and visits with my network physicians and cardiothoracic surgeon, I finally got the HMO to approve me to get the surgery done by Dr. Miller.

The basis for my requirement to get the surgery done at Stanford was because Dr. Miller is one of the most experienced surgeons in the world that can save the heart valves. By the way, Dr. Miller is just as nice and personable and down to earth as David and his staff are.

Well, I had my surgery on July 20, and am now recovering well at home. The surgery was 9 hours but Dr. Miller was able to save my valves and he said they look good and should last me a long time. I stayed in the hospital until July 25. I must say that the first month of recovery was not a pleasant thing to go through. My chest hurt every time I cough, turn, get up, laid down, etc. The worst was probably my throat (or was it my tongue - I couldn't really tell) hurt badly from the tube the breathing tube.

This pain lasted almost 4 weeks after the surgery! But once that healed, I was able to eat better, and in turn, I had more energy to walk more and more. I am up to walking between 2.5 to 3 miles a day, and actually today walked over 7 miles straight!

I went to see Dr. Miller yesterday for my follow up visit and he said I looked and my heart sounded good. He gave me the go ahead to return to work anytime I wanted to. I am probably going to start work again the first week of October. My chest still has a little discomfort, both from the incision (lower part) and the sternum not yet fully healed, but other than that I feel great.

The biggest thing is the relief that I have from not having to worry about a dissection anymore and the anxiety that I had before the operation. Dr. Miller is very sure that I do not have Marfan's and David ruled out Ehler's Danhlos the first time he saw me. The weird thing is that my oldest brother who is five years older than me, has an aortic root aneurysm also.

His aneurysm is asymmetrical in shape and is surgical at this point, measuring 6.2 at the largest points. He too is now seeing David and will have the surgery done by Dr. Miller on Sept. 30. Dr. Miller thinks we have a connective tissue mutated gene, that was probably inherited from our father. We can't be sure what his aorta looked like since he passed away from cancer at the age of 37. At this point, the rest of both my and my brother's aorta looks normal, but of course, we'll have an echo done every year.

Brian, I just wanted to thank you so much for if not saving my life, then at least giving me a chance to have a better quality of life with the valve saving surgical repair- by referring me to David and the folks at Stanford. I truly believe that I stumbled upon your website not just by happen chance, but rather by divine intervention. God has blessed me in so many ways, and I'm looking forward to not waste any part of the rest of my life away. You are doing great work with your website so please keep it up. You're welcome to use any part of my story to add to your site, as a fellow aortic dissection/aneurysm survivor, I too would like to help others if I can.

God Bless,

Ricky Flanders


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