After a 2 year hiatus, AVR is back on

[gageyk]

My story from not quite 2 years ago.

24 hours ago I thought I'd be in AVR surgery right now(8/24). Things changed while in my angiogram yesterday (8/23). Doc was just checking my coronary arteries when he noticed my pressure was much lower than the echo had shown 4 weeks ago. Technician asked Doc if it would be ok to go to the valve with the cath. They were pleasantly surprised to see that valve area was not as severe as the echo had shown. They checked 3 times and couldn't believe what they saw. Doc said to postpone surgery indefinitely, do a follow-up echo in a couple of months and then follow-up once per year. I should be good to go for anywhere from 1 to 10 years, same thing I was told 6 months ago after an echo. Has anyone else had this experience? Doc said that do not routinely use the angio to measure the valve. He said they will start now on patients like me, I am 44 years old and asymptomatic. I've known about a heart murmur all my life. 2-3 years ago I had my first echo and subsequent echos every year. Valve has been getting worse but I was told in 11/04 that I had 5-10 years before surgery was needed. I had been getting my echos done at the local hospital. For my most recent echo in July 05 the cardio wanted me to use their people and equipment. This echo was way out of whack with the others but I thought and was told that my valve had deteriorated drastically so I never even thought to question the results. Of course now I'm asking why I didn't ask for another echo or why the doc didn't want to do a redo when the results were so different.

I am perplexed as to how the most recent echo(7/28) could differ so much from the angio(8/23). Echo showed valve area of 0.9 cm, pressure @ 62mm Hg. Angio (8/23) showed valve area of 1.4 cm and pressure @ 34mm Hg. So I went from severe aortic stenosis to moderate. The numbers from the angiogram match closely my previous echo from 11/04.

I'm now confused more than ever and not sure what to believe. I don't trust my cardio or his echocardiogram tech or equipment. I was less than 24 away from having perhaps unnecessary OHS. Should the cardio have asked for another echo when the July 05 results showed such a dramatic change in only 6 months? Has anyone else had similar results from an angiogram?

I had my last echo 2 weeks ago, no real change from 2006. Avg. gradient 38, peak 70 and valve area 0.8. In fact, not really different from previous echos over the past 3 years. However, I have been feeling a stabbing sensation in my heart area every once in a while and occasion light-headedness but really no symptoms while exerting myself. I climbed Mt Lassen and skied it a couple of times about a month ago, snow skied 40 days this past winter(drought year-I should have had 60 ), got my heart rate up to 188, I'm supposed to go no more than 70% of max so I went overboard, on a mtn bike ride last week and felt fine. I also hike/walk about 3 miles a day 3-4 times per week, longer hikes on weekends.

Cardio said the decision was mine to make but he was recommending that I do not go on a week long backpack trip with friends and other weekend backpacking trips with my 11 year old daughter. He said I could do a stress test, not nuclear, and that then he would consider letting me go or not. With the already existing limitations on my recreation and my occasional symptoms, I decided to forgo the stress test and just get the damn surgery over with. I want to get on with my life!! I'll be celebrating my 46th birthday in the hospital 3 days post op, scheduled for August 7.

The plan is to be on the slopes this winter and back in the backcountry in 2008.

 

[liam13]

I can so relate. My cardio wants to do another echo in a year. He was fine with my consulting with a surgeon who I am seeing july 5th. It's the damn symptoms (mine fatigue and chronic lightheadedness) that is pushing me to probably go for the surgery now, instead of waiting. I'm a big backpacker and have cancelled my annual week long hike for this summer because of the symptoms. The synmptoms are not getting better, just worse. I'll be 47 mid july, but am leaning towards a mechanical valve. I do downhill ski, but was planning on switching over to snowshoeing this next winter anyway. Ever skiied at Sun Peaks in British Columbia? Great place. Liam

 

[67walkon]

Gag, I don't know if this is the answer for you, but I have some information I got just this week from the surgeon. Over the past few years, the echo has shown my aortic valve deteriorating from about 1.5 to 1, as of March this year. They told me to start thinking about a surgeon.

The surgeon recommended a new CT scan. The last one was October, 05. We did a new one in May and my ascending aorta had grown from 4.3cm to 5 cm. He recommended surgery.

As part of the workup, they did a cath this week. The surgeon is out of town, but a local guy did the cath. He checked my valve and got 2 very inconsistent measurements. One said 1.7cm, which is pretty good. The other measurement was .93cm, which isn't very good. The local told me he could not explain the difference and suspected the valve was somewhere in between.

This is what the surgeon said:

"The second number (thermodilution) is more reliable and accurate -- and it is consistent with the previous findings.
The first number is a calculated number based on nomograms that can occasionally provide an inaccurate reading."

I always thought the cath was the gold standard for measuring that valve, but apperently not. Like you, I am pretty much asymptomatic. I don't know how your aorta is, but the exact size of the valve isn't as big an issue as the ascending aorta with me.

Maybe that helps, maybe not.

 

[leine]

Hi,

After reading through this thread, I checked my two recent echo results and compared their values. I have severe AR and some aortic stenosis. Therefore, I normally don't look that much on the aortic valve area. However, when comparing the echo results I noticed that all echo values were essentially identical except for the aortic valve area. It changed from 1.7 sqcm a year ago to 2.7 sqcm this year. Seems to me that they have difficulties in getting this value right based on pure echo results.

Regards.

 

[Phyllis]

I put you on the calendar for August 7th. I'm sure you will be glad to be back to good health and on the slopes!

 

[gageyk]

The main reason for scheduling surgery is the sudden onset of, as Liam13 says, chronic lightheadedness. On June 18 I was lightheaded all day after spending the weekend hiking with no symptoms. Prior to that I had occasional lightheadedness, once every week or 2. I never really thought it was related to my valve because during and after physical exertion I felt fine. For the past week I'd say at least 40% of the time I'm lightheaded but otherwise I feel fine.

No descending aorta has been detected. And no Liam13 I've never skied Sun Peaks but I have skied many resorts in Southern B.C. and the Kelowna area. Absolutley love the areas I skied.

Leine,

Valve area is subjective on an echo. As others stated the catheter is supposedly the gold standard and the number is actually calculated by measuring the velocity of blood flow, "cardiac outputs".

My cardio always said my numbers indicated moderate to severe AS but as long as I was asymptomatic then I could hold off. Is my lightheadedness atrributed to my valve? I think so. For the past while I have been getting occasional stabbing sensation in my heart, although these have subsided in the past couple of weeks. I really don't know if I'm more cognizant of every little odd sensation or paranoid, I just don't know. But reading stories here helped me make the decison to "get her done".

Thank you Phyllis. So far I'm very realxed. I went through hell 2 years ago and I'm ok so far this go 'round. My wife on the other hand.....