6 month reprieve!

[ks1490]

Wanted to share my news today, since my original (totally unexpected) diagnosis of Aortic Regurgitation and Dialated Aorta last year, my every-4-months echos had shown a progressive worsening - going from an LVIDd of 6.0 and LVIDs of 4.0 to 6.8 and 4.6, respectively. I thought this week's echo would confirm the trend, and I would be planning for surgery starting today. However, the results came back today, my dimensions actually improved ot 6.6 and 4.4. Not earth-shattering but at least this is a momentary stabilization! Now my cardio wants me to come back in 6 months instead of 4. This is fine with me, I feel like I got free 6 months' pass, particularly not having to worry about surgery around the holidays.

Has anyone else progressed like this - that is, progress to the negative for a while and then stabilize? How long did the stabilization last? I realize I'm on borrowed time here and surgery is not too far ahead in my future, but I would like to get as much pre-op time as I can without jeopardizing my heart....

 

[Karlynn]

Ah, breath in the fresh air of freedom!

With the variability of echos I suspect that the case may be that your downward regression has stabalized a little, rather than it getting better (not to be a big wet blanket ) But no matter how you cut it, they didn't see a worsening from last time, you get 2 extra months to mess around and all is well with the world!

 

[davidfortune]

Echos are an estimate. Maybe the last echo was measured too big. Maybe this one was measured a little too small. The point is you didn't see a worsening trend. Even if this echo was under measured, it still probably wouldn't exceed last measurements.

Could be stabilization or could be that the previous measurement was just wrong.

I always advocate getting an echo and interpretation from a different practice just to hav different hands, different machines, and different eyes on the problem.

Especially since echos are an estimate.

Get a second opinion after the holidays!!


David

 

[ALCapshaw2]

I'm not sure I would agree with the statement that echo's are an "estimate", BUT, there can be a High degree of Variability from Operator to Operator and Machine to Machine, so I suppose that's not much different than the prior statements.

Bottom Line: All of your numbers are in the same 'ballpark' so you can 'probably' assume (dangerous word) that your valve disease is not progressing rapidly.

Be sure to schedule your 6 Month checkup early!

'AL Capshaw'

 

[Mike C]

How dilated is your aorta?

 

[Meghan]

My husband is in the waiting room (waiting on second opinions, not for things to get worse); his dilated aorta measured 5.2cm in December 2003 and has been stable there in MRIs every 6 months since. The dilation was relative to measurements taken a number of years ago.

I am not sure if it's completely applicable given that it's aorta and not left ventricle, but that is our experience so far.

We have found it useful that the same person has always made the 'official' measurements, since the dilation measurement can vary so much depending on the angle at which you draw the line, etc (our cardiologist has shown us this on the MRI images). I agree with the others that the 'improvement's are probably in the measurement and not in you physically.

Meghan

 

[MrP]

Meghan,
Glad your husband's aneurysmal dilation has not increased in size over the past 2-3 years. This is good news indeed. If you don't mind sharing with others, I have a few questions that may also help others. 1) Does your husband have BAV? If yes, does he have regurgitation and if so how much? 2) Is his aortic root 5.2cm or is his ascending aorta dilated? 3) Does he have hypertension and take beta blockers to prevent increased dilation? If yes, for how long? 4) Does he smoke or have a history of smoking? 5) Does he have any noticable symptoms from the aortic dilation such as chest pain? 6) How old is your husband? 7) How does his aortic dilation compare with the rest of his aorta?
Thank you in advance for sharing any information concerning your husband.
MrP

 

[ks1490]

My cardio and the same tech have done all 4 echos together, so there has been some consistency in the "measurers", and therefore hopefully in the measurements.

 

[Meghan]

Mr. P,

I don't mind sharing. Eric is 26, has BAV as part of Shone's syndrome that was diagnosed as an infant. Coarctation of the aorta repaired at age 1, ballooned open his mitral valve to correct severe stenosis at age 7.

The regurgitation on the BAV is mild and the valve appears to be well functioning at the moment. Dilation in the ascending aorta. He has been on beta blockers for a number of years; was on them before the dilation was detected. No smoking, no noticable symptoms.

We are now trying to determine what to do about this BAV; the section of the aorta certainly needs to be replaced but there is no consensus among the surgeons we've consulted as to what to do about the valve. One wants to put in mechanical, one would leave it alone, and the third asked for more information and has not responded since we supplied it the beginning of August. The opinion gathering process has gone on since March and the waiting has been difficult, since we originally felt like we were looking at a summer surgery and now have come to the point where we really can't schedule our lives around it. Are these types of wait times for opinions typical for an 'elective' surgery?

It has helped my piece of mind to read about the experiences of everyone on these boards, since I've never dealt with major surgery, or even hospitals, etc beyond going with Eric for his MRIs and such. Thank you!

 

[MrP]

Meghan,
Thanks for sharing. Your husband has been through a lot already. I am not sure what is typical with respect to wait time for second opinions, and in particular for his unique situation. I do know each time OHS is performed, the risks increase. From this perspective, replacement of his aortic valve at the same time as resection of his ascending aortic aneurysm may reduce risks associated with another surgery down the road. I was told that if a BAV patient has an ascending aortic aneurysm, it is best to replace both at the same time....even if the BAV regurgitation is not severe. A St. Jude mechanical with composite Dacron graft will give him the best chances of not repeating surgery later. There's an excellent thoracic surgeon at Yale Medical (one of the best in the world), but I can't remember his name.....I can do research if you'd like to pursue it.
Best, MrP