Ascending Aortic Aneurysm ~ my story, your thoughts?

[ShellKell]

Hello all. I am wanting to share my story.

So, this past summer I went into the ER for a pulminary embolism test. (I've had a history of DVT's) I learned that I had an aneurysm in my ascending aorta. They told me it was 4.2 cm, not small, but not huge either. To follow up with my primary doctor in morning, to consult a hemotologist due to my blood clot history and go from there. I called my primary doc the next day and they wanted to see my vascular surgeon asap.

Well the next day the "official" report came back and it said it was a "prominence" of 3.8 and not an aneurysm. So my primary doc then said to wait to go back to my vascular, but rather, to do a test to see if it grows and go from there. So I accepted that and waited, I went in for a ultrsound to see if it's grown and they only did a scan of my abdomen. I left there asking my husband, why did they only check my abdomen when it's in my chest? And why am I going back to the hospital that told me it was an aneurysm and then told me it wasn't? Talk about emotional! This test came back negative. So here's where I was.

1. Aneurysm, 4.2
2. Prominense 3.8
3. No aneurysm

Needless to say I was left questioning and this just added to my overall stress. Since I had no aneurysm, there was no reason to see my vascular. (she originally said I would after this appointment)

So I made an appointment with my primary doc, gathered all the records and scans, including the wet read from the ER (which she had never seen) and said, explain this to me. I don't understand, but I want to know what's going on with me. Of course I want to do this without seeming like I am over reacting. She looks at it all and I think due to all our questions says...go ahead and go back to your vascular and let me figure it out.

So last week I went. He examined me and got my history and then looked at the films. Came back and said it is an aneurysm of 3.8 and it has dissected. Discussed with me about open heart surgery being the way to fix this particular type of aneurysm and sent me to a heart surgeon. (cardiothorasic).

So, just had another CT scan and then went right to the surgeon. I saw him two days ago. Heart doctor says it is an aneurysm, between 3.8 and 4.2. That there is no need for surgery at this point. Only surgery is open heart surgery. No dissection. Of course we were concerned about this (since the other doctor said I had one) and asked him about it. He said he didn't see one. Then was good enough to bring us to his office to show us the scans. He hadn't looked at the one in July which the other doc had. He said that the scan was done for a PE and the dye was going through the arteries at a different rate than if it was a CT angio. Because of this, it does appear that there is a dissection on that scan. But my current scan is clear. He put me on a beta blocker to get my blood pressure under control. it was high even on my Cozaar. Oh, and he also told me I have a heart murmur. I've never known this at all, ever....

I left feeling at peace and confident. But now am thinking on it more. My husband and I are thinking of getting a second opinion.

Anyone's thoughts. Oh, I am a 45.

Thanks!
Michele

P.S. Another thought. Should I get a cardiologist to manage my care now?

[ShellKell]

Thank you so very much for all your feedback. I am thinking that I have made a good decision regarding of what the local doctors think.

Peace.

[skydnsr]

Mass General has some of the best aortic specialists in the world.  Dr. Eric Isselbacher is a cardiologist who is world renowned for his expertise in measuring the aorta.  I do not think you need to travel further than Mass General.  It is one of the top heart hospitals in the country.  You should get good care there.  You are very lucky to live close to Boston, for that reason.  You have made a good decision, and I wish you good luck.

[ShellKell]

Thank you for all your feedback.

After lots of reading and talking with my husband. I am indeed going to go to an Thoracic Aorta Center, at Mass General in Boston. I would love to go to Clevland Clinic but since Boston is so close, we will be going there.

I appreciate all your help and your feedback, it's been so helpful.

[skydnsr]

Oh, sorry, I see that it was only recently that you were told you had a dissection, not six months ago.  I'll stand by what I said about the horrible tearing pain, though.  Thoracic aortic dissections are generally associated wtih severe chest pain and often are associated with an impending sense of doom -- a feeling or "knowing" that something is really, badly, seriously wrong.  If you ever do get sudden severe chest pain, you need immediate evaluation to rule out a dissection.  Any kind of chest pain needs attention, but a sudden, severe, horrible pain needs especially quick and expert help.

[skydnsr]

Aortic medicine is an area in which few doctors are truly expert.  I would suggest going to an aortic center for your next opinion, if at all possible.  Aortic centers are generally located in big cities.  The Cleveland Clinic, which sponsors this site, has Dr. Petterson and Dr. Svensson, who are world-famous aortic surgeons.  If you are not close to Cleveland, google "aortic center" and see if there is one within a reasonable distance from your home.  Some places, including Cleveland Clinic, will let you send your records for review, without traveling yourself.  On any specific doctor's resume, look for him to list a special interest in aortic aneurysms and/or aortic valve replacement.  

Of the opinions you have received so far, the last one, from the heart doctor who looked at both sets of scans, makes the most sense to me.  At least he looked at both sets of scans, and he gave you an explanation as to why a previous doctor thought there was a dissection.  Dissections generally cause excruciating chest pain, so if you have not felt any kind of horrible, tearing pain in your chest, and you have lived six months since the previous doc thought you had a dissection, then you probably do not have one.  Your enlarged aorta and your heart murmur, though, do put you at increased lifetime risk for a dissection, relative to someone who has a totally normal aorta and no murmur.

Yes, you will need to be followed by a cardiologist.  If any doctor tells you that a 3.8 to 4.2cm aorta, along with a heart murmur, does not need to be followed, then move along to someone else.  The "heart doctor" who you just saw might be able to follow you, depending on whether he is a heart surgeon or a cardiologist.  Cardiologists usually monitor the patient until it is time for surgery (if ever), and then you will be referred to a surgeon.  Once you are established with a local cardiologist who will provide your ongoing care, then you can still go out of town on a one-time basis if there is another expert who you want to see.  Have the expert's findings sent to your local doc.  Of course, if you live near an aortic center where you can get expert care on a routine basis, that is what you should do.  

Let me suggest another website that might interest you:  www.bicuspidfoundation.com