Watchful waiting and Boston doctors

[daveh]

Hello everyone,

I am a new poster, but have been reading this forum for a few months, and am so glad it is available. Sorry if this post rambles a bit.
I was diagnosed with aortic stenosis in April of 2012, and have been seeing a cardiologist every six months. I have a bicuspid aortic valve, and my ascending aorta has consistently been around 4.1.

My most recent echo from two months ago shows that I have moved into the severe category:
Aortic valve at .8 cm/sq
Peak jet velocity at 4.9 m/sec
Peak gradient of 97 mm Hg

My previous echo from eight months ago showed:
Peak jet velocity at 3.8
Peak gradient at 56.

The valve area has bounced back and forth between 1.0 and .8 over time, which I attribute to the variability of echos. However, the increase in peak jet velocity and peak gradient concerns me, although my cardiologist says that he is waiting for symptoms before considering surgery. (I get a little short of breath when climbing stairs, but that has been true for a few years, and I am 58 years old.)

I have not yet looked for a second opinion, since waiting for symptoms seems to be the directive in the medical papers I have looked at. However, I get the impression from reading this forum that there are cardiologists or surgeons who take a more pro-active approach, and since I am the one most vested in my own health, I guess it makes sense to get the opinion of a cardiologist or surgeon who is more pro-active.
Does anyone know any cardiologists/surgeons in the Boston area that could be considered more pro-active regarding surgery? I also wondered if anyone has directly approached his or her cardiologist’s recommended surgeon to see if the surgeon disagrees with waiting for symptoms?

Thanks for any feedback and for your time,
Dave

 

[Paleowoman]

Hi Dave - You might want to get a second opinion on this.

I had bicuspid aortic valve and was referred for surgery when my pressure gradient reached 68 mm/Hg and my valve area size 0.9 - this was about three months before I had the actual surgery. I did not have any symptoms. I was told that to do surgery when I developed symptoms would carry greater risk than doing the replacement before symptoms. I would guess different doctors have different opinions on this. My cardiologist waited until I was at the stage where he considered that symptoms would be likely soon…and that's what the surgeon thought…but becasue I didn't have symptoms there was no urgency, hence it was a planned AVR and I could prepare for it (as best as anyone can prepare for this type of surgery).

 

[Jkm7]

Seeing you live in Massachusetts, you have access to two of the finest heart centers in the U.S.
Brigham & Women's and Massachusetts General always rank upon the best of the best. I had two
OHS at Mass General Hospital and am so grateful we live so nearby such a fine facility.

All best wishes.

 

[daveh]

Thanks Anne. Do you know whether your 68 mm/Hg was your mean gradient or your peak gradient?

Thanks Jkm7, I will definitely look into Mass General. Do you know whether the approach of any of the cardiologists/surgeons is not to wait for symptoms?

Dave

 

[Paleowoman]

Thanks Anne. Do you know whether your 68 mm/Hg was your mean gradient or your peak gradient?

Hi Dave - 68 mm/Hg was my peak gradient, and that was referral to surgeon point around three months before I had surgery.

 

[epstns]

Hi, Dave, and welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. I spent over 9 years waiting, so I have an idea of how you feel right now.

You might want to review your echo results with a surgeon. There are other measurements on the report that may help the doc's to get a complete picture of your condition. The ones I'm thinking of are the left ventricle size and wall thickness. When you have a stenotic valve, sometimes the heart compensates for the smaller valve opening by building up muscle, which thickens the walls of the heart. It also enlarges the ventricle as the muscle develops. The docs have guidelines in place so that if your heart begins to "bulk up" and enlarge, building too much muscle, they may operate before symptoms are presented. They do this because the more the heart "remodels" to compensate for the small valve opening, the more difficult it is to remodel again after surgery.

Also, with a valve area of 0.8 cm[SUP]2[/SUP], you are just about at the cut-off point where they perform surgery even absent symptoms. It is worth asking your cardio why he/she isn't suggesting surgery already.

When you push for immediate surgery, they may counter your argument by saying that they are trying to wait long enough so that they can comfortably recommend a tissue valve for you. They usually recommend tissue valves for patients over 60. If that is their argument, come on back and start a new thread and we will brainstorm the options with you.

 

[DebbyA]

It's possible the shortness of breath on stairs means you've had symptoms for several years...58 sounds young to me for age to be a cause of it.
Are you also feeling tired a lot and thinking that's age too? Stenosis symptoms can creep up so gradually we kind make them the 'new normal'.

Adding on to Steve's remarks, I was told that 50 MEAN gradient would be an indication for surgery. Another thing they watch for is fluid retention, that's why they press on your lower legs and abdomen during an exam.

 

[BostonJohn]

Hi Dave,

I will be having my surgery next Tuesday (March 25th) at Brigham and Women's Hospital, performed by Dr. Sary Aranki. My experience with the hospital has been outstanding thus far, including my pre-op exams yesterday. The cardiovacular facility is very new (I think it opened in 2008) and it is very impressive. Everyone that I have met with has been nothing but helpful and professional. Dr. Aranki is quite an expert on valves, and he has always impressed me with both his knowlwedge and his confidence. He has wanted to be aggressive with my case, but has also been very thoughtful about my needs and timing. He ultimately sent me to see another cardiologist (Dr. Dale Adler, a Chief at the Brigham) for a final consult to determine the urgency of the surgery, and it was a great experience for me. I respected Dr. Aranki quite a bit for being able to take a step back and swallow his pride and say he wanted one more opinion, especially the opinion of someone as highly regarded as Dr. Adler, and I was excited that he got me in to see him! I obviously don't know my surgical outcome yet, but so far I would recommend the Brigham to anyone that needs to consider heart surgery.

Best,
-John

 

[daveh]

Thanks for the responses. I have set up a meeting with a surgeon next week, in fact, with the surgeon that my cardiologist had mentioned when he said I would need surgery at some point. The cardiologist is waiting for symptoms of more shortness of breath or further echo changes (by the way Steve, the echos so far do not indicate ventricle enlargement), but he did reply that the surgeon may be more anxious to operate. That certainly agrees with many of the threads I have read. While I am glad I have set up the meeting with the surgeon, I'm also freaking out a little about the chance that I may know in a few days that the surgeon is anxious to operate. I know that is silly, since I want his opinion, but I guess that's human nature.

John, good luck with the surgery. I'll be watching for the results.

Dave

 

[BostonJohn]

Thanks Dave,

What hospital is the surgeon at? Sorry if I missed that above...

-John

 

[daveh]

The surgeon is at Beth Israel. However, I also plan to talk to a surgeon at Brigham and Women's.

Dave

 

[daveh]

Well, I saw the surgeon two days ago, and he recommended surgery. I have set up a May 15 surgery date. Now I have to decide tissue vs. mechanical, and look at all the information posted here about pre- and post-op considerations. It's a strange feeling to know I will really be in surgery.

I will have a scan done to determine the actual aorta size, which was 4.2 on the last echo. If the aorta is not up to 4.5 and looks to be in good shape when they get into the chest, it will not be replaced. In a way I'm hoping that it has grown enough to be replaced so I don't have to think about another operation down the road (assuming I decide on the mechanical valve).

Thanks again to all of you on this forum who have shared your experiences (in all of the threads).

Dave

 

[Heart Of The Sunrise]

Dave: I am now one year post-op. Other than taking my regular heart meds life is back to normal. Valve choice- I have yet to read about anyone being unhappy with which way they went...tissue or mechanical.
Both save your life. You need to weigh the + and - for each valve type. I started out thinking tissue. But , the more I learned the more I knew that a mechanical was the right choice for me. It is a very personal choice.
Most of my concerns about going mechanical ......turned out to be nothing....Coumadin has not been a problem and I only occasionally hear my valve...usually late at night. Good luck with your choice...plenty of experience with both choices here....keep on reading and you will see which way is best for you!:thumbup:

 

[BostonJohn]

Hey guys,

I had surgery at Brigham and Women's on Tuesday and I am preparing to head home tomorrow. I could not be any happier with the facilities and staff. The surgery prep team really put me at ease, the surgeon was fast and precise and the nursing staff has been excellent. The Shapiro Center that houses the cardiovascular center is amazing. My family raved about the waiting spaces, and my rooms in the icu and step down unit have been HUGE (8 guests at once unexpectedly but still comfortable), well appointed, comfortable and state of the art. I look forward to going home tomorrow, but I cannot say enough good things about the Shapiro Center at BWH.

Best,
-John

 

[daveh]

Just an update: I had AVR on May 15 at Beth Israel hospital in Boston. I had my aortic valve replaced with a mechanical valve. My aorta was not replaced. I went home on May 19. The entire team at the hospital was great. So far, I have not had any complications/issues, other than trying to get the Coumadin dosage right.

For about five days after surgery, I did not hear the valve at all, so I thought I would not have to deal with that issue. However, I then started to hear the valve if the room is quiet, but I have to say that it doesn't bother me, which I thought it would.

Dave

 

[bluefields409]

Delighted to hear that your recovery is going smoothly. Hopefully the coumadin situation will sort itself out quickly too. From what I have read it can be a bit of a juggling act.

Helen

 

[epstns]

Dave - The only time you need to worry about hearing your mech valve is if you hear it stop!

Congratulations on your progress. Keep up the good work.