Help needed - dilatation of the ascending aorta

[f_donald]

Hello,

I have had a St Jude’s mechanical aortic valve since 1992 secondary to a congenital bicuspid aortic valve. The cardiologist indicated a concern with dilatation of the aorta following a yearly ultrasound and a follow-up CT with contrast revealed that the root is 3.5 cm TV and 3.6 cm AP, the ascending aorta at the level of pulmonary bifurcations is 4.5cm x 4.5cm, and the arch anatomy is described as normal at 2.6cm. I received the information over the phone on Tuesday, April 4th from the cardiologists nurse. The nurse indicated that my cardiologist will likely recommend a surgical consultation when he returns from vacation next week and I was given a prescription for a beta blocker via another physician at the practice. This was a less than desirable way to get this type of information...

This said, I am very anxious because I do not fully understand the implications of the CT findings and the best course of action. To add my apprehension, my relatively new internist that I contacted to discuss the CT answered no questions but asked me why the cardiologist was not performing a CT on a yearly basis, why this was my first CT of the aorta, and why I was not taking beta blockers already. While the cardiologist was highly recommended and appears to have a good reputation, I am now left with a poor understanding of the diagnosis, I am uncertain of the best course of action, I am questioning if my cardiologist was properly managing my condition, and I am not getting answers until next Friday.

Help with better understanding the diagnosis/severity of the diagnosis, and advice on the ideal follow-up for the dilatation of my ascending aorta would be greatly appreciated. Any recommendations for top doctors in Michigan would also be greatly appreciated.

Thank you.

 

[Lynlw]

Hi, Sorry you were left so confused. I'm not sure all of what you need to know but USUALLY for an enlarged Aorta, they don't operate until the diameter is greater than 5, so chances are when you are able to talk to your Cardiologist they may just suggest keeping an eye on it with yearly testing. As for why you haven't had yearly CT scans. My son goes to the very best centers for CHDs and only has had 1 ct scan, even tho he's had 5 heart surgeries, one reason is because of the high levels of radiation, he has yearly echos and for the past year years MRIs every year or so.

 

[williamsm18]

hi
i found out in oct that i my aortic valve needed to be replaced along with that my ascending aorta was at 5 cm actually they called it a 5 x 5 i had my surgery in jan at beaumont hospital in royal oak mi by dr.altshuler he is an aorta specialist and has done over 6000 of these procedures the surgery went great and im getting back to normal now i would highly recommend him.

mark
st jude and ascending aorta replacement
jan 2011

 

[Jason]

I had my aortic valve replaced along with the ascending aorta, due to anuerysm on March 7th. I can't give you advice on the need for surgery in your case or not, but I can tell you that in my case my aorta expanded to 4.5cm in 2001 or 2002, and they watched it with yearly echos until this year when it had expanded to 5.4cm X 5.4cm. My surgeon told me that their trigger point for surgery was 5cm, so I passed by that in the last year. She did say that depending on age, other conditions, etc. the trigger points may be different, so you would want to discuss this with your doctor, and don't be afraid to get a second opinion. In my case, the aortic valve was not in poor enough condition to warrant replacement on its own (although it was degrading due to bicuspid valve from birth), but when the anuerysm forced open heart surgery they replaced it as well. I am now over four weeks out from surgery, and feeling pretty good today. I hope you get the information you need for your particular case, and again, don't be afraid to get a second opinion if you are not comfortable with what you are hearing.

 

[Bill B]

Although 5cm is the common cited cutoff point for surgery, that is a generalization. A surgical consultation is certainly indicated. I would proceed with that and let the surgeon explain it and your options and answer your questions. Most BAV patients are eventually confronted with this issue. Mine was a little further along than yours, but not much, when I had it fixed on recommendation of the surgeron. Mark has given you a recommendation. Keep us posted.

Oh, and although your internist may have your best interests in mind, I don't like the way he handled his concerns with what your cardiologist had been doing by asking you rather than the cardiologist. Unfortunately, not many doctors are good at communicating with patients. I've had several that were downright awful, most are just OK. It's hard to handle the kinds of things they encounter, and so I really appreciate the good ones, but in this case I think the doctor showed no tact.

 

[Duff Man]

4.5 is in range for surgery for some people, but we're not doctors and we don't have enough information to say anyway. I wouldn't necessarily assume it's go time yet.

I'm being followed at UofM. They have a keen interest in the bicuspid aortic valve and aortic disease. The highest regarded aortic surgeon at UofM is Dr. De3b. He is very well known in the world of aortic surgery.

The other place I would consider having surgery in michigan is at Beaumont, but I'm not familiar with any of their aortic surgeons. They do have high volumes and an excellent reputation though.

When I consider a surgeon, I look at their published medical journal articles to get an idea of who they are and how prolific they've been with aortic surgery. See pubmed.org

 

[texasmike]

I agree with those who are encouraging you to seek a second opinion. In Michigan you are probably less than a day away from Cleveland Clinic and Mayo. I am sure there are other great heart hospitals nearby. No matter which direction you ultimately take, you are talking about a second serious operation with a mechanical valve in place. Take your time and think everything through!
Good luck!

 

[Superbob]

My ascending aorta was 5.3 on my final echo and measured at 5.5 on day of valve/root replacement surgery six years ago. I've heard on many occasions that 5.0 is usually or often the number preceding surgery but I am sure that can vary with the individual and a lot of circumstances. Given the confusion, I agree with others that getting a second opinion would be a good idea.

 

[Bryan B]

Although 5cm is the common cited cutoff point for surgery, that is a generalization. A surgical consultation is certainly indicated. I would proceed with that and let the surgeon explain it and your options and answer your questions. Most BAV patients are eventually confronted with this issue. Mine was a little further along than yours, but not much, when I had it fixed on recommendation of the surgeron. Mark has given you a recommendation. Keep us posted.

Oh, and although your internist may have your best interests in mind, I don't like the way he handled his concerns with what your cardiologist had been doing by asking you rather than the cardiologist. Unfortunately, not many doctors are good at communicating with patients. I've had several that were downright awful, most are just OK. It's hard to handle the kinds of things they encounter, and so I really appreciate the good ones, but in this case I think the doctor showed no tact.

I agree with everything Bill has said here. I was sent for a surgical consult when my aortic root hit 4.7cm and my ascending aorta hit 5.1cm. Both my cardiologist(s) and surgeon said that once you hit 5.0cm you meet the surgical criteria for having surgery. Unfortunately I did not have health insurance or any other king of financial aid at the time. That was in July of 2009 and my first surgeon said there was a 70% chance of saving my autograft (first surgery was Ross Procedure). By the time I got financial aid (SS Disability and Medicaid) it was over a year later and everything had gotten bigger along with my valve leaking worse and was not salvageable. My surgeon (new one specializing in disease of the aorta) measured my aortic root at 5.4cm and my ascending aorta at 5.8cm by CT scan on 12/22/10. When he did surgery he got measurements of 5.4cm and 6.0cm. During all of that wait I felt like a ticking time bomb waiting to go off and would not recommend waiting that long. I feel lucky that I got away with waiting that long.

 

[f_donald]

Thank you...

Thank you...

Hello,

I was out of town for a little over a day and I was amazed by the number of responses to my post. I did not know about valvereplacement.org until the day of my post; this is a great support community.

I would like to thank everyone for replying. Knowing the typical criteria for surgery really sets my mind at ease (i.e., low risk of a bursting aorta while I wait to see the Dr. is good to know); the University of Michigan and Beaumont information is also very helpful. I think that I have very focused on the valve and I failed to understand the usual progression of aortic valve disease.

I will be setting up appointments in the next couple of weeks and definitely getting a second opinion. I will keep my eye on this thread for additional input, recommendations and advice, and posting again if overwhelmed with information. I will post an update as soon as I know something definitive.

Thank you,

Don

 

[csutherland]

In Jan, 2005 Jerry's ascending aorta was measured by echo & CT at 5.3 cm. He was almost 68 at the time and doing well after his AVR in 2002. The local surgeon who had performed the AVR and Dr Kouchoukas in St Louis agreed that he needed to wait until 5.5, based on risk of surgery. He had CTs twice a year for a while, and now yearly, and last month measured 5.1. I know they don't shrink and this number can vary based on who is reading the CT, the angle, etc. Anyway, so far, so good. He's 74 yrs old and is still very active, painting houses several days a week.

 

[Greg a]

Don, a heart felt WELCOME to our OHS family glad you are getting some of the information that you are seeking ,there is a wealth of knowledge here for the future .....


-Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

-what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

-what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

-Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf[/QUOTE]