Thoracic Aortic Aneurysm - Will A Doctor Do Surgery on Demand? (overweight, eye)

[conusmound]

I am 51 years old, and I was diagnosed last year with a thoracic aortic aneurysm. Last Sunday, I spent the night under observation at the hospital because I had severe chest pain, which the doctor said was not heart-related. (I have an appointment with a cardiologist Friday afternoon, and I scheduled this before the episode Sunday.)

The aneurysm has not dilated to where operating would be mandatory (6 cm), but I am considering asking a cardiac surgeon to go ahead and operate now. I understand death from a burst aneurysm would be almost instantaneous, and there is no forewarning. I do not want to live with the anxiety of waiting for this other shoe to drop. I would rather undergo the risks of surgery than have this time bomb. (I asked one specialist how I would know the aneurysm has burst. He said, "If you wake up in the morning, it hasn't.")

Equally worrisome is that I do not have any of the risk factors. I am 51, while the average age for a person with an aneurysm is 60-70. I have never been a smoker, and I quit drinking alcohol 16 years ago. I do not have a connective tissue disease such as Marfan's syndrome or Ehlers-Danlos syndrome. I am a bit overweight, but I have lost 20 lbs. in the last eight weeks, and have my eye on losing 20 more before November. I do not have hypertension.

My point is that if I have developed this aneurysm despite belonging to none of the high-risk groups, the chances of it rupturing may also go against the odds.

If the specialist I see Friday will not agree to do the operation in the near future, should I resort to doctor-shopping? My ex received excellent treatment at The Cleveland Clinic for a valve replacement, and it is just two hours north of me. Their cardiovascular department is second to none.

[yellowbelle]

Have there been other early/sudden deaths in your family? Could certainly be familial aortic aneurysm, of which I am unfortunately quite familiar. If there were a history of sudden death of a parent, sibling, or blood-related aunt/uncle, you have a stronger case for immediate surgery.

In the case of the person I know with this condition, his surgeon gave him an option of when to have it surgically repaired. I had suggested he wait a few months and get another scan to see how fast it was growing, which was the absolute worst advice for him (funny, because he never takes my advice any other time...) He spent the watchful waiting time acting like he was dead. In the end we decided he should get the surgery because he was so paralyzed with fear his would rupture and he would die, just like his dad did. He needed the surgery not to live, but for his peace of mind and quality of life.

You need to do what feels right for you, and find a doctor who will support your decision unless you are being ridiculously and unreasonably demanding. I'm not clear if your aneurysm is currently at 6cm and I am NOT a doctor nor am I giving medical advice. But you need to advocate for yourself. If the doctor can't convince you with hard facts and validated statistics, then you should doctor-shop if that is what YOU need to feel comfortable and go on with your life.

Just my opinion. Good luck to you.

[shadowne]

I'm sorry you are going through this. If I were in your shoes, I would be finding the best surgeon for this particular surgery, two hours away to the Cleveland Clinic would be worthwhile.

[conusmound]

Originally Posted by shadowne

I'm sorry you are going through this. If I were in your shoes, I would be finding the best surgeon for this particular surgery, two hours away to the Cleveland Clinic would be worthwhile.

I saw the cardiologist Monday, and he was pretty blunt: Any surgeon who would work on the aneurysm as it is right now should go to jail.

So, in February, I'll have another CT scan. He said it would not dilate to a dangerous measurement overnight.