Surgery now not recommended after TOE/TEE

[SwansCity1912]

While it took three attempts; I finally had a successful TOE/TEE scan done yesterday.

My aortic regurgitation is actually moderate to severe rather than severe. As a result I’ve gone from surgery by June-24 to maybe monitoring every 6 months. I’ve an angiogram scheduled in two weeks which will continue and after pushing a little on the symptoms; a stress test is also now planned.

The expectation is the angiogram will be clear due to my age (mid 30s) and I’ll be very interested in what the stress test shows; it is a stationary bike test. Interestingly I was first offered a stress test in January however we proceeded with the TOE/TEE due to my symptoms!

I know I’ll get lightheaded during the stress test as it happens a lot already. I’m guessing they want to see if the heart rhythm is disturbed under stress? Any other insight?

If either of these next two appointments give evidence to support surgery then I was told we’ll pivot back to proceeding with the surgery.

I have concerns. I’m concerned the consultant wasn’t aware they were changing their advice on surgery, I’m concerned the consultant didn’t appreciate how impactful the symptoms are on my day to day life and I’m concerned at the prospect of having to live with these symptoms while waiting for ‘something’ to happen in the future.

I’m taking time off work. Going to have some proper rest, challenge myself on how much the symptoms are impacting my life and recover my mental health.

If after these next two tests the consultant remans of the opinion we don’t proceed with surgery I’m going to seek a second opinion if I continue to feel as I do today.

 

[tommyboy14]

Great news on the TOE/TEE result.

Nevertheless, I would advise you to get a second opinion. If you are getting light headed you are symptomatic. Bad valves dont only make you light headed. You could also get a TIA or stroke, which is a terrible experience.

Is it possible that the lightheadedness is due to meds? Candesartan did that to me.

In any case, if you are concerned about symptoms and your current medical team isnt helping, second opinion always good idea.

 

[SwansCity1912]

Is it possible that the lightheadedness is due to meds? Candesartan did that to me.

I’m getting lightheaded, some shortness of breath if I move around too quickly and I’m exhausted after a light day. I also get short periods of chest pain, chest heaviness, occasional extra beats and palpitations. I’m just puzzled why this isn’t driving a decision in itself.

I started blood pressure medication around 8 weeks back and have considered if this is a contributing factor. I had all of these symptoms before but I guess the lightheadedness is happening more at rest than before.

 

[tommyboy14]

It could be the medication. When I was given Candesartan pre surgery to keep the pressure on my LV low, I also beagn to become light headed. But I was already out of breath after a 500 meter walk by then (I am normally fit). I think you need to change medical teams.

 

[SwansCity1912]

It could be the medication. When I was given Candesartan pre surgery to keep the pressure on my LV low, I also beagn to become light headed. But I was already out of breath after a 500 meter walk by then (I am normally fit). I think you need to change medical teams.

I can walk a solid 20min without shortness of breath; unless there is an incline!

Been frustrated with my consultant since the start to be honest. I don’t want to disturb the next two tests proceeding but certainly feeling like I should be doing that no matter what the outcome.

 

[Protimenow]

I can't and won't tell you what to do. I was born with a bicuspid aortic valve. It was diagnosed when I was 23, and I was told that 'in 20 years or so' I would need to have it replaced (mechanicals were new at the time). I lived with that hanging over my head until I was almost 41. I had a good job, good insurance, and was getting progressively weaker.

I saw a cardiologist every six months or so. I did the stress test on a bicycle. I don't think they had TEE tests back then.

I was getting weak. I asked my cardiologist 'how weak do I have to be before I can get the surgery?' That decided it for me - I was given a referral to one of the pioneer mechanical valve surgeons.

I had it done when I was still pretty healthy. Waiting for things to get worse may have lengthened my recovery time or increased the surgical risk. My timing was good - I had a good job and good insurance. Eight months later, I didn't have either.

In my case, I knew that EVENTUALLY I would need to get the valve replaced - so why wait until I was so sick that I was in more desperate need for it? I'm comfortable in the knowledge that my timing was good. I don't regret not waiting until I was REALLY BAD OFF to finally get the surgery.

You of course have to make your own decisions, but it's possible that my experience might be of some value to you.

 

[SwansCity1912]

You of course have to make your own decisions, but it's possible that my experience might be of some value to you.

It is very helpful thank you.

 

[Chuck C]

If after these next two tests the consultant remans of the opinion we don’t proceed with surgery I’m going to seek a second opinion if I continue to feel as I do today.

I'm glad that you're getting a second opinion. They had you at severe, now the recent imagery comes back at moderate/severe. You're symptomatic and it would seem that should be the driving factor.

The echo prior to my surgery had me classified as severe. When my surgeon operated he indicated that I was actually 'critical', the stage beyond severe. He pointed out that the echos allow an approximation of the severity, but actually getting his eyes on the valve allows him to accurately determine the stage. Echos are not perfect and other factors, such as symptoms, should be taken into account.

And also, underscoring the importance of getting a second opinion, expert opinions really do vary. I am aware of an individual who was recently told by one surgeon, based on his recent echo, that he is nowhere near needing surgery. Soon after that he received an opinion from a surgeon at a more highly regarded hospital and was told, in no uncertain terms, that it was time for surgery now.

You're symptomatic and have been for some time. I would try to find a consultant who takes that into account and takes it seriously.

 

[pellicle]

I’m getting lightheaded, some shortness of breath if I move around too quickly and I’m exhausted after a light day. I also get short periods of chest pain, chest heaviness, occasional extra beats and palpitations. I’m just puzzled why this isn’t driving a decision in itself.

I started blood pressure medication around 8 weeks back and have considered if this is a contributing factor. I had all of these symptoms before but I guess the lightheadedness is happening more at rest than before.

its all very complicated when its not 'simpl' ... Aortic Stenosis is simple and relatively clear. Its all the stuff around (variously called) Ai (or AR) where it gets complicated.

Some interesting reading

https://www.jacc.org/doi/full/10.1016/j.jacc.2018.08.2162

Best Wishes

 

[Timmay]

You know you’re going to need to have surgery. It will happen. Thus, in my humble OPINION, it is much better to have surgery before symptoms start and your body is still healthy. Waiting 6 months or a year does what? Nothing except provide more risk (e.g. your heart muscle thickens irrevocably, you become weak such that recovery is harder, etc).

I’m happy you’re getting a second opinion.

 

[Lucker]

SwansCity1912​

Yeah, I agree with pellicle that AR is more complicated than AS, due to more difficult quantification, due to more equivocal opinion on when the damage to the heart is really significant. Also with Timmay, that if the surgery is imminent you gotta have it fast. I heard that MRI gives the strongest insight to AR.

 

[SwansCity1912]

its all very complicated when its not 'simpl' ... Aortic Stenosis is simple and relatively clear. Its all the stuff around (variously called) Ai (or AR) where it gets complicated.

Some interesting reading

https://www.jacc.org/doi/full/10.1016/j.jacc.2018.08.2162

Best Wishes

That’s some heavy reading. Will give it another go over the weekend. Wasn’t aware it’s more complicated like that but helps me understand a lot more. Thank you.

You know you’re going to need to have surgery. It will happen. Thus, in my humble OPINION, it is much better to have surgery before symptoms start and your body is still healthy. Waiting 6 months or a year does what? Nothing except provide more risk (e.g. your heart muscle thickens irrevocably, you become weak such that recovery is harder, etc).

I’m happy you’re getting a second opinion.

It really plays with your mind at times. I’ve been questioning again (!) how symptomatic I really am.

I went to watch a sports team play yesterday and (liked I’ve done for years) had a quick 5 second jog up a set of steps to my seat. Mind focused on something else, something I really enjoy, and you forget about your limitations. Heart pounding, a few extra beats thrown in and enough shortness of breath to be unable to hold a conversation and think oh…. I forget how poorly I actually am. Maybe I’ll fail this stress test anyway and back to surgery plans.

Yeah, I agree with pellicle that AR is more complicated than AS, due to more difficult quantification, due to more equivocal opinion on when the damage to the heart is really significant. Also with Timmay, that if the surgery is imminent you gotta have it fast. I heard that MRI gives the strongest insight to AR.

Really helpful to know. I had no idea it could be like that. I’d assumed my TOE/TEE scan was going to answer all the questions!

 

[treichert0312]

I had my pig valve break over a weekend of strong exertion - 45 mile bike rides, yard work including 70 pound ladder, 10 k run, and then when I did my evening plank, heard blood rushing around my ears. I was not symptomatic until sometime over that weekend.
That was in May.
Surgeon had an opening in August, unless things got worse.
I was on light duty but still having chest pain - my wife really wanted it done sooner and she helped motivate me to go to the ER and basically wait for the surgeon. I did get in to the surgical calendar on Sunday, Fathers Day 2022.
Best time to get the surgery because I was still in relatively good health, physically fit. The good health is very helpful on the “other side” when recovering, before muscle damage occurs in the pump.
Symptoms & quality of life are really important factors not to be dismissed! Best of luck!

 

[atlantadoug]

While it took three attempts; I finally had a successful TOE/TEE scan done yesterday.

My aortic regurgitation is actually moderate to severe rather than severe. As a result I’ve gone from surgery by June-24 to maybe monitoring every 6 months. I’ve an angiogram scheduled in two weeks which will continue and after pushing a little on the symptoms; a stress test is also now planned.

The expectation is the angiogram will be clear due to my age (mid 30s) and I’ll be very interested in what the stress test shows; it is a stationary bike test. Interestingly I was first offered a stress test in January however we proceeded with the TOE/TEE due to my symptoms!

I know I’ll get lightheaded during the stress test as it happens a lot already. I’m guessing they want to see if the heart rhythm is disturbed under stress? Any other insight?

If either of these next two appointments give evidence to support surgery then I was told we’ll pivot back to proceeding with the surgery.

I have concerns. I’m concerned the consultant wasn’t aware they were changing their advice on surgery, I’m concerned the consultant didn’t appreciate how impactful the symptoms are on my day to day life and I’m concerned at the prospect of having to live with these symptoms while waiting for ‘something’ to happen in the future.

I’m taking time off work. Going to have some proper rest, challenge myself on how much the symptoms are impacting my life and recover my mental health.

If after these next two tests the consultant remans of the opinion we don’t proceed with surgery I’m going to seek a second opinion if I continue to feel as I do today.

My advice to you and everyone is: get the best care you can find. Not all cardiologist are the same so search out the best. I went to Cleveland Clinic for my AVR back in 2011. I am 65 now 12 years later and I am glad I did. I am now followed by the team at UT Southwestern in Dallas. Number 1 heart care in Texas. All the best to you!