What kind of consultant are you under?

Hi Casey, I was diagnosed at 4.1cm last June following an echocardiogram. I then had a CT scan which measured at 4.3. My second CT scan six months later showed no change in size. I am waiting confirmation for my next test which may be another echo. My GP referred me straight to a Consultant Cardiac Surgeon who specialises in Aortic disease. I specifically asked my GP to refer me to him as he is the surgeon who had operated on my sister who was diagnosed at 5.1cm. My surgeon does both private and NHS and I initially saw him through my work insurance who now refuse to cover me further and so next test will need to be on NHS. Following each CT scan, I was given a CD showing the dilated part of my aorta and its proximity to my other organs. To be honest, I did not know what I was looking at until the surgeon explained it. He strongly recommended that I started taking a small dose of Beta Blockers which I would have prefered not to take but my body seems to have adapted to them now.I also thought that maybe I should get a second opinion mostly because the more I read and learn about the condition, the more questions I have. Judging by this forum, there seems to be a vacuum once you are diagnosed and a total lack of support for those of us in 'watchful waiting'. Wishing you all the best.

Hi Casey,

I see a cardiologist and like you I paid privately when I was first diagnosed because I wanted to find out as much as I could. I was told (as I have been at each appt since) that no surgeon would ever operate on my 4.2 thoracic aneurysm because the risk of surgery would be greater than the risk of rupture. He said it would need to be 5cm at least before I would be referred.

I saw a young member of his team at the last appt (NHS) and she said that we could operate now but the risk would be greater to me. Personally, as I am in my sixties, I am hoping I won't need the operation even though it would obviously be a huge relief if it was repaired. I am sure your cardiologist will refer you when the time is right but it does seem to be a grey area in this country with no one specialising in the aorta, at least in my area.

Hi Casey..

i'm in the same boat. I was diagnosed in Jaunary with a 4.2 m in the ascending aorta.  Was sent to a cardiologist, who did not put me on any meds, nor did he write down my family's history of aneurysms!  On my dads side, his two older brothers and his father all died of ruptured aneurysms..my dad had one, but he died of cancer. Sometimes, I feel like I can feel it grow...I have a stretching sensation in my chest periodically that I had mentioned to my dr a couple of months before my "buddy" was discovered. I understand the risks of the surgery at this time outweighs the risk of it rupturing, but I hate this limbo. They can't guarantee this thing won't dissect, rupture...they just shrug it off and say we'll check it again in six months, because insurance won't pay for the test any sooner and I can't afford to pay privately. I had an echo two years ago, and my dr said it wasn't present then, so it has grown that much in a small amount of time....so, like others and you...I'm in limbo....waiting to see what will happen.

Joy

Hi Casey-

   I've not been to my regular doctor since my diagnosis. But I have seen a few different cardioligst, in the past 4 months, who all agree I need surgery to replace the valve and part of the aorta. I am not on any meds. This is all on the NHS, no private doctors. 

 

Thanks for all your comments I am going to see my gp next week and ask for a second opinion or see what he says as I have not spoken to him since my diagnosis. Mary Rose you are so write when you say about the total lack of support. I live in Ireland and from what I can see on here our health systems are more or the less the same. I have looked into forums here at home and theres nothing no help, support or advice and I am so thankful to have found you guys. I am hoping that by getting a second opinion that I can understand and except it all a bit more. I am heartbroken that I may not be able to have more children but if a second opinion could tell me that having another baby will do more harm than good instead of it may or may not and its your decision as my consultant told us then I can move on from this. 

I've seen a cardiologist....I see my gp on 3/11/15......I haven't seen her since the diagnosis....I'm going to ask her opinion...I'm just perplexed that my cardiologist didn't address the aneurysm ....he told me the size....said it wasn't there two years ago.....said he would scan again in July..said my heart was fine....nothing else...ABSOLUTELY NOTHING!!!

That is very encouraging news re. Kevin Helliker, Mary-Rose. That is eleven years since he wrote the article, did he say if it has grown at all? On my last visit to the hospital I was told that one man has been the same measurement for 14 years. The trouble is, nobody knows. I haven't seen the cardiologist for 15 months now. I have yearly echos, and last time I saw a very pleasant young doctor but I really wanted to see the cardiologist. There were a few things she mentioned that were not right, so it didn't fill me with confidence. I really panicked at first and that is why I had a private appointment, but since then whenever I do see the cardiologist, I feel that he is making light of the aneurysm. Last time he said that a normal aortic root might be 3.7cm so a 4.2 wasn't anything much to worry about! Like you, I go through periods where I feel ok, but any slight pain in the chest/jaw area sends me into a worry again. It is comforting to be on this forum and know you are not alone.