How do you know it's time?

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L

LonMel

Member
Joined
Apr 13, 2008
Messages
23
Location
New York City, New York
This is my first post to the group. I find this site inspirational and informative!
For the last several years I've been going for echoes, MRs, CTs and nuclear stress tests. I've been diagnosed with an aortic root aneurysm and severe aortic insufficiency and enlargement of my LV. My pressure gradient has been getting wider. I am a distance rollerskater and so far unaffected by my condition, although this could cause my LV to enlarge. Most of my symptoms are at rest such as fluttering and palpitations. I had a chat with my surgeon today and the challenge is determine when my cardiac reserve becomes compromised before real damage happens. The plan is to have an echo every six months. I intend to have the Ross procedure when it is time - how did you know it was time?
Lon
 
Hi Lon, I didn't have any Aortic problems, but the general consensus seems to be that the time to repair a problem is before permanent damage is done. What is the sense of waiting to the last moment when the fact that it needs repair has been established? Myself, a bout with Endocarditis pushed me to a 4+ mitral leak, and it was "time", the palpitations were non-stop, and I was starting to experience shortness of breath.

Steve
 
You should talk with a Ross Procedure Specialist about the timing. You are fortunate to have one of (if not THE) Best RP Surgeon in the USA living in your state, namely Dr. Paul Stelzer.

See the Member Profile of "StretchL" who had a lengthy interview with Dr. Stelzer and created a Photo Journal of his Surgery. His Signature Line includes a Link to that PhotoJournal.

I found 11 pages of Links to a Search Request for Keyword "Stelzer" so there is a LOT of information on him on VR.com!

Bottom Line: For the Ross Procedure (and Repairs), it is generally best to have surgery BEFORE there is Permanent Damage to the Heart Muscles and Walls. SOONER is BETTER.

'AL Capshaw'
 
LonMel:

Active people like you may not really be noticing symptoms that others would be feeling. Our bodies compensate for these problems, and if your body is really fit, you may not notice something until you're sliding downhill.

Sometimes you look at symptoms; sometimes you look at numbers. You aren't noticing symptoms, so what are the numbers on your echoes?

Best to get in and get it over with before any more damage is done. Forget considering real damage; it can sneak up on you.

Have you gotten names of any Ross specialists? Best to get those now and check those surgeons out -- before you absolutely have to make an OR date.
 
So happens that Dr. Stelzer is my surgeon. I have seen the many posts and StretchL's journey in the OR. His basic answer is that everyone is different and it is hard to predict. When I saw the good doctor over a year and a half ago, he gave me 1-3 years before I would need the repair.
 
LonMel welcome. I don't want to appear rude or off base here, but how is it that an administrator in noninvasive cardiology not know the answers to these questions? In my experience with hospital administration, I have to say, this is a first. Just curious. ;)
 
Very astute Ross! I've talked with many cardiologists and I get differing opinions. Does that happen in medicine? :) I figured I'd ask the group, people who actually lived through the ordeal.
 
Without doubt it does. That's why there is so much confusion on issues. I'm a survivor of a ruptured thoracic aortic aneurysm. I was waiting for the magical 5.0 for the operation and it blew at around 4.7. Now, we've got people in here with the same deals, time bombs in there chests and surgeons letting them walk around up to 6.0. Confusion, you betcha!:)
 
How do you know it's time?

I think you need to make that decision for yourself. When I was diagnosed with BAV and a 4.8cm aneurysm, I was 56. I thought, why wait? I'm only going to get older, and... how will I know when I get to that 5.0cm magic number, will I have medical insurance? Essentially, you need to take care of yourself, 'cause no one else will. It's not just about the aneurysm...it's also about timing!

Hope this helps. :eek:
Lilly
 
I was bicycling almost every day, and rollerbladed on the weekends, but over a few months, starting maybe 2 years back, I started noticing degradation in my capacity. I went in for an asthma check-up, but the asthma medicine didn't help. Then, it degraded rapidly about a year ago, and I went in for an echo. You can read the details in this post. If it hadn't been caught in time, I would have probably suffered permanent heart damage, but the medicine worked wonders and stabilized the situation.

At first, both my cardiologist and surgeon recommended surgery as soon as possible, but the medicine worked so well, they changed their mind, and recommended I just wait until "things got worse". I was initially happy, not having to have surgery. As the months passed by though I have struggled with both anxiety and depression, waiting for the inevitable, watching out for symptoms, while not being able to bicycle or rollerblade as I used to, but exercising moderately indoors during the winter.

Come this spring, I attempted to commute by bike again, but had a bad episode of "cardiac asthma", and barely made it home. That was the tipping point for me. I hadn't found this forum at the time, but found help in Adam Pick's "A Patient's Guide to Heart Valve Surgery". After having read this cover to cover, the surgery was no longer as unknown and scary, and my decision was easy to make. So now I have a date, I am looking forward to getting it over it, and start the recovery process back to my old self.

It's a difficult decision for everyone in a "wait for things to get worse" situation. I found that living in that limbo, while not being able to enjoy what I used to, was stressful, and I am glad I found my tipping point, that made it a no-doubt-in-my-mind decision for me.

Karl.
 
I didn't know I had an aneurysm. I had palpitations, and felt faint at times, then it got to where when I looked up into the sky my balance was disturbed.
I always knew I would need surgery again after having it done at age 5, I told my wife to make an appointment and not to let her talk me out of it.
My biggest fear was that when they looked at me they wouldn't let me out of the hospital till I had the surgery. It was close, lol, my cardiologist told me I had an enlaged aorta (5.8 cm) and my heart was enlarged. She said I needed surgery and it needed to happen within the next 6 months and the sooner the better. And until I had it not to lift anything heavier than a loaf of bread. She then gave me toprol for the my blood pressure till I had surgery. I knew it was time, my body told me so, the things like palpitations and such are not normal, it is your body screaming at you that something is wrong. Now that you have been diagnosed there is no advantage in waiting, in fact the dangers are greater than having the surgery.
 
LonMel said:
So happens that Dr. Stelzer is my surgeon. I have seen the many posts and StretchL's journey in the OR. His basic answer is that everyone is different and it is hard to predict. When I saw the good doctor over a year and a half ago, he gave me 1-3 years before I would need the repair.
Click to expand...

No point in looking any further, you won't find anyone any better at RP!

I'd say it's time to go see him again for a re-assessment.
IMO, Surgeon's have a better 'feel' for timing than Cardiologists.
 
I did see Dr. Stelzer yesterday and he wasn't eager to operate until it is time. He defined the right time as when my cardiac reserve becomes affected. He feels the best way to measure cardiac reserve is with a nuclear stress test. In his opinion, There is a 6 month window when my numbers start to go down before surgery is needed. So every 6 months I will go back for my echo.
You may ask why wait? Well, my resting EF by the nuclear stress test was 69% and stress 85% last September. This tells me that my heart hasn't been compromised - yet. More importantly, I would hate to give up skating until absolutely necessary!
Good luck Karl!
 
LonMel said:
I did see Dr. Stelzer... He feels the best way to measure cardiac reserve is with a nuclear stress test...my resting EF by the nuclear stress test was 69% and stress 85% last September. This tells me that my heart hasn't been compromised - yet. !
Click to expand...

Welcome to VR, Lon. What sorts of EF numbers would indicate a compromised cardiac condition...a lower rather than higher EF under stress? I'm unfamiliar with using "cardiac reserve" as a guideline to trigger surgery. I can't recall seeing this in the ACC/AHA guidelines, etc.

Best wishes,

Jim
 
A normal LV ejection fraction is 55 to 70 percent.

http://www.mayoclinic.com/health/ejection-fraction/AN00360

If your ejection fraction number is over 60 percent it is an indicator of high blood pressure. Your cardiologist will be able to determine the appropriate course of treatment. Early intervention will help you avoid a possible tragedy.

http://www.nutralegacy.com/blog/gen...ion-measurement-for-heart-disease-prevention/

Still, if Stelzer isn't worried about it right now, then I guess you shouldn't be either.
 
Hmm. Well, when I had OHS I also had BAV with aortic stenosis/insufficiency as well, but no aneurysm (that came later!)
I knew my whole life, after having AV repair, that it would eventually need replacing, but my cardio always said it was when I began to show symptoms - chest pain, shortness of breath, etc. That was when we would know that my heart was no longer able to compensate for the weak valve.

If you are mostly asymptomatic, then your surgeon might have a point. I hesitate to say that, though, given that you have an aneurysm...those things make me nervous.

Do you know how big the aortic root aneurysm is?
 
Your LVEF seems to be on the high side.

From what I've read, this is typically seen in Highly Trained Athletes (think Cyclist Lance Armstrong) AND Heart Patients whose hearts are compensating for diseased valves. In your case, it could be a toss-up.

I certainly don't want to argue with Dr. Stelzer.
I'm glad he wants to monitor you every 6 months.
Don't miss any of those check-ups!
 
Hello and Welcome,
I think you are absolutely doing all the right things. Tell tale sign of compromisation is shortness of breath when you werent before. I had the Ross in 97 (they are doing it a little differently now). My surgeon told me my aneurysm was caused by the Ross and congenital bicuspid valve disase didnt help matters. PM me anytime, sounds like you are in good hands.
 
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