Way to ask the doctor?

Mine developed in the last three years. I also have bi-cuspid valve which has been monitored since birth. I was at 3.5 in 2014, and now am at 4.0. I understand from medical journals there is a higher chance for operation at 4.5 versus 5.0, due to my BAV.

Good luck for the operation when you have it.

Thank you Derek. And thank you also for the recommendations on questions to ask. This is still new to me and frankly overwhelming.

I went to make an appointment with an osteopath a couple of years ago and when I showed her my back CT scan that also showed my anuerysm she did not want to treat me. I contaced the vascular surgeon and he said to go ahead as it was not a problem. 

It was first found by chance when I had a scan on my gall bladder.When I asked for advice at that time a Statin was suggested but he said that the side effects would probably stop me taking it. He was right.  

May I ask why you stopped taking the Statin? I have heard varying responses on station from they are lifesavers to you want to avoid them if possible, but no one has said said why they do or don't like taking them yet.

Muscle pain after just a few weeks and it worsened. I stopped and tried them again twice more with the same result. No point in taking something that stops you from walking.Some people though take them and still run marathons.

THe consultant said that they would give me the s***s but that did not happen.

Thanks Derek. I have heard about potential leg pain. Since you are not on them, has the doctor suggested an alternative?

I don't see the vascular surgeon or when I did I called it my 15 second appointment.I would have the scan and then get an appointment letter and he would say no or minimal change we will scan it again next year.

That one retired and the new one just sends a letter to that effect.

He answered my question about seeing an osteopath by letter and I followed up this year by asking why my CT scan in 2015 had shown it as 3.9cm but subsequent ultrasound scans at 3.4 , 3.6 and 4.0cm  this year.  He invited me in for a chat. He said that the CT scan is accurate but the ultrasound ones depends on the moment the operator catches the image on her screen. So as it is like a pulse as it expands and contracts.

At the time I was taking warfarin and said that I was concerned that any bleed would be worse because of it. He agreed that was the case.

As you use the term cardio doctor I assume that you are in the USA.

Have you tried getting travel insurance since being diagnosed?

    

Hi Derek,

You are correct that I am in the US. That is why the testing and standards here are bit different. I actually have a cardio team that I work with, as my bi-cuspid valve and murmur were discoverd at birth. This is the first active group I found online with other patients that I felt comfortable speaking with.

I haven't tried to get travel insurance since my diagnosis. Part of the reason I want to speak with the doctor is that I have two potential trips coming up in 2018 and 2019, to Italy. While I would like to go, I have never traveled outside of the U.S. and for me, my health is one of the highest priorities. From what I have heard on this forum from others, it sounds like travel insurance can be problematic. I know for life and some medical insurances here in the states, even a "healthy" heart condition is frequently not covered depending on the severity of the pre-existing condition.

I had aortic stenosis and had my valve replaced in May 2012. it went very well apart from leaving me with atrial fibrillation :-)

I had an amplatzer amulet fitted to my left atrial appendage in April so the place where clots form is now sealed off. It they removed the appendage at the time of surgery it would not be a problem. .

Insurance companies work from a 'tick list'. They ask if it had 'bled' ?, No. Has it been operated on ? No. Sorry we can't insure you.It does not matter to them if it is 3cm or 5.5cm the answer is the same.

One quoted £2,000 for a month in America but would do Cuba for £1,000. In the end I stuck with my usual insurer and had the condition excluded from the policy.  

Re Italy.

The bicuspid aortic valve has been recognized as a common congenital abnormality for centuries. Leonardo da Vinci was one of the first to call attention to the aortic valve with 2 leaflets. He recognized the superior engineering advantages of the normal trileaflet valve. Considering that it is a common abnormality, bicuspid aortic valve is mentioned only briefly in many paediatric and cardiology textbooks

 

After my mother's open-heaart post-operation complications, I spoke with her cardiac surgeon regarding potential issues that might be worth communicating to my team. He said that the bi-cuspid replacement is the most common open heart surgery in the U.S. That information brought a little more comfort into my life. Still any discussion about the potential for an anyersym to develop some how was never on my radar as possibility.