any suggestions?

[annie10]

Well, since my last post I have heard from CCF. Dr. Svensson is "not worried" about my 4.5 cm aneurysm, and suggested a follow-up CT in Jan. I honestly don't think I can wait til then, but I am SO tired of looking for answers and help. (Who ever thought they would be in a position of pleading for OHS?) I know Dr. Svensson is one of the best heart surgeons in the world, but even HE didn't answer my question, so I have concluded there must be something wrong with how I am asking. I would be grateful for any help, either with re-wording the question, or learning to live with the answer I got. My problem:
Dr. Svensson stated that my aorta is "stable" at 4.5 cm. However, this is a surgically altered measurement--had I not had reduction aortoplasty of a 4.9 cm. aneurysm during my AVR in 2000, my aortic dilation would be much greater.
If we assume the first surgeon reduced the 4.9 cm aorta by even 1.0 cm (and I would hope the actual reduction was more than 1.0 cm), then my aortic walls at present are in the same condition as if dilated to 5.5 cm. From all of the research I have read and been told about the nature of aortic aneurysm and bicuspid valves, I sincerely believe this is a dangerous situation and cause for immediate surgery.
The reduction aortoplasty did not improve the condition of the aortic walls- it merely reduced the diameter. The walls are the same weakness, with the same loss of elasticity. Now these walls are again dilated, further weakening already fragile tissue.
If I am not correct in my thinking, I would be extremely grateful if you would explain it to me...etc. etc.
His response (through his nurse) was to refer to the Law of Laplace, and to say he felt the scar tissue from the aortoplasty would aid in preventing any rapid dilation of the aorta.
I have read up on the Law of Laplace, and it would apply to the reasoning behind doing aortoplasty in the first place, but I don't feel it applies to a 4.5cm dilation...and the scar tissue hasn't prevented dilation to this point, why would it prevent dilation in the future?
Right now, I don't think there will be much further dilation--I think the aorta has reached its limit of elasticity, and the next step is rupture.
Is there another way to find answers? It would be easy to just give up and tell myself I've done all I can...but have I?

 

[Ross]

You've probably read way more then I on this subject, but I agree with your assessment of the situation. Did you present what your saying to him just like you've done here? I think I'd begin to get a little pushy with him about it.

 

[Karlynn]

Or get another opinion, using your question as stated above.

 

[Nancy]

Unfortunately, Anita, you are in a situation which is very difficult for anyone to deal with. You have one of the best doctors telling you that your situation is stable, but you feel differently about it. Apparently, your tests have told your doctor what he wants to know now.

You can always get another opinion.

I think this is an area where insurance companies would play a background role. They need some kind of proof with testing and doctor's recommendation to pay for surgery.

There is always more you can do about any given medical problem. You will have to be the most vocal advocate that you can for yourself, or if you can't do that, you will have to enlist someone close to you to do it.

Trust me when I tell you that you sometimes have to "take things to the wall" to get the care that is available. You will have to hammer and hammer away at people. And you will not be popular.

So start by getting a second opinion and even a third.

 

[MrP]

I agree with others suggesting another consult and opinion, and if only to give you peace of mind during this "wait and monitor" phase. I am not clear on your history or currrent situation from reading this post but believe you are concerned about the fragility of your aorta given your BAV (and medial degeneration of your aorta). Laplace's law remains valid regardless; however, risks are difficult to quantify based upon unknowns like aortic wall tension due to scar tissue or increased fragility from medial degeneration since your last surgery. If you are having symptoms such as chest pain, this is very important and needs to be clearly articulated as well. It'd be helpful to also know how the size of your ascending aneurysmal dilation compares with your descending aorta, as well as your size and weight, etc.. With medial degeneration or necrosis from BAV, your concern about further weakness of your aortic wall is completely valid. However, risks associated with surgery may outweigh risks associated with waiting and monitoring.
All my best,
MrP

 

[annie10]

thank you all for responding. I just wrote a 30 minute reply, which I proceeded to lose in cyber-space. I don't have the mental energy to try and repeat it, so I will try again tomorrow.