Seek Out The Best Advice
17 September 2001
We have been reading the various narratives on this support group, and have emailed a few people with questions. This is probably the most useful site for people with aneurysms, because you can discuss issues with people who have been there, and done that!
My husband had emergency open heart surgery two years ago. He had a single bypass and aortic valve replacement. He was told about his ascending aortic aneurysm at that time, but it only measured 4.0 cm, so there was no need for repair. (The aneurysm was apparently caused by the faulty bicuspid aortic valve). Looking back, we wonder if he should have found a surgeon that could repair everything at once, rather than face another open heart surgery?????
After one year, we felt very fortunate, because the CT scans had shown no growth of the aneurysm. Unfortunately, the last CT scan showed that the aneurysm had grown to 5cm, a 1cm growth in one year.
Because of everyone's effort to update this site, we were able to contact a few people from our area, and have received names of good surgeons, "just in case". Because this is a complex reoperation, my husband wants to be in good hands, should the time come. We will be traveling to Stanford next month for an "assessment". We think it may have to be repaired if the aneurysm grows to 6cm. We will know more next month after our meeting with the surgeon. I will post an update to this site so that we can help others with what we learn.
The one thing that we do know from our discussions with fellow aneurysm patients is: don't take anything for granted - and that includes advice from your local doctor or cardiologist (who may not have real experience with aortic aneurysms). Seek out the best advice that you can.
Update: 2 Apr 2003
My husband visited Dr. Craig Miller at Stanford University and was advised to have an annual MRA for surveillance of the aneurysm. He was not as concerned with it being 5.0cm, but rather the size of the aneurysm as it related to his normal aorta. Dr. Miller was not too concerned unless it reached or exceeded 2 times normal. It also appeared that Jim had a genetic factor regarding his ascending aorta. Jim had a bicuspid aortic valve, which is often associated with bad ascending aortic tissue.
After Jim's second annual MRA with Dr. Miller, his aneurysm had grown to 5.5cm and had exceeded 2 times normal. The aneurysm involved his aortic arch as well. In December of 2002, Dr. Miller recommended that Jim have the aortic replacement surgery.
It has been 3 months since Jim's open heart surgery. Because his aortic arch was involved, his body temperature was lowered and he was put in a 13 minute coma! Everything went smoothly and Jim recovered quickly. He was walking around the hospital a few days after surgery and we had an uneventful 7 hour drive home about 10 days later. After six weeks, Jim began exercising on our cross trainer or stationary bike 30 minutes a day. He plays golf, shoots skeet, and lives a completely normal life. He is healthier now than he has been in years. We have two young boys at home that are thrilled to be playing golf with dad again!
We are very grateful to have the aneurysm business behind us.
Discussion, comments, or questions: Kathleen Butler
© Copyright 2005 Kathleen
Butler
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