Possible Second AVR Surgery - Any Risks?

[iren_999]

Hi Everyone!

Well, some bad news. I had my first aortic tissue valve replacement surgery back in 2016 and after feeling a bit tired and my chest beginning to feel heavier when walking long distances, I met up with many surgeons and it turns out, that my original surgeon had inserted a smaller valve and its determined that I need a second AVR surgery to have them put in a bigger valve that fits my size. I was doing quite well in the past 2 years especially taking beta blockers each day to get me through the day, but I have been doing a bit awful mainly when walking long distances.

Question being, has anyone went through a second AVR surgery here? If so, then it would make me feel a bit more better thinking that I am not alone who is waiting for my second surgery.

TAVR was brought up several times when meeting up with numerous surgeons, but they said despite the fact that it is not an open heart procedure, there are still many risks with that as well.
And, I am 75 yrs old with perfect health and they would go with the open heart method especially when fitting a new bigger size tissue valve.

I am going to meet with my original surgeon as well, and see what he thinks. And yes, I had been going through this with my original surgeon as well, but he denies the fact that my valve is too small and hence, has been ignoring my visits and appointments also...

So my main response I am waiting for is that anyone who or any close friends or relatives had multiple aortic valve surgeries especially the open heart method?

Thanks!

 

[Superman]

Nope. No risks.

Sorry - couldn’t resist answering the question in the subject line.

I’ve had two open heart surgeries. Plenty of posters here have had two or more. Mine were 19 years apart with the last one 9 years ago, and I’m still only 45 - so circumstances are a bit different than a second in two years at 75.

Challenges have to do with scar tissue and sawing through the sternum a second time. Recovery is always easier the younger you are. Beyond that, I can’t think of anything particularly unique that you would deal with that would make the second significantly more challenging than the first.

 

[iren_999]

Well, sorry. Yes, there is risk with ANY surgeries for that matter.

This new surgeon of mine who I had this last consultation with said that If I were to wait for even 3 years, I may end with heart failure and can damage the heart in the long run if I wait too long. So even I may feel a bit good and energetic now, may not mean that I will feel the same for the few years down the road. I am just so angry of my surgeon who originally inserted this. To be fair, he did a quite good of a job on the surgery itself, but the issue is that the valve he put in was just very small.

A few weeks, I even had my ultrasound and they said my heart walls are functioning correctly and is stable and no damage. However, its just the valve size is small, that's it...

Guess its just bad luck!

 

[Paleowoman]

My aortic valve that I got back in 2014 is too small too. I knew it was too small within a few weeks of surgery as I developed mild left ventricular hypertrophy and my pressure gradients were high. It took till last year for my cardiologist to really take me seriously. He then referred me to a new cardiac surgeon for “surgical assessment”. I felt this new surgeon was very good and very understanding. Tests showed that I have moderate patient prosthesis mismatch, peak pressure gradient 58, mean gradient 31 and effective orifice area 0.76. Even though I have never got back to the fitness and health I had prior to AVR, the surgeon doesn’t want to do surgery right now to put in a bigger valve as he says the mortality risks are too great for me at this stage - he’ll wait until the valve degenerates (another surgeon told me similar). The surgeon said he wouldn’t be able to put in a bigger tissue valve where the current one is due to the scar tissue and that he might have to put in a mechanical valve as that offers a bigger valve area. Other option is an aortic root enlargement but no guarantees that he could put in a bigger valve. Scar tissue again was mentioned.

You will likely have different risks from me as we’re all unique, and if you are not far from heart failure then the risk of waiting for redo is greater than having it - it’s balancing one risk against another.

I’m more than a little angry at the surgeon who put this valve in. She could have put a larger valve in suprannular (?spelling) position or she could have done a root enlargement - doing those first time would have definitely meant a bigger valve.

 

[pellicle]

Hi

sorry to read of your bad news, 2016 ... that's really a short time.

I've read that the biggest factors influencing calcification are smaller valve diameter and reqiurement for reop is incerased also with the decision (is it also need?) to put in a smaller sized valve.

Question being, has anyone went through a second AVR surgery here? If so, then it would make me feel a bit more better thinking that I am not alone who is waiting for my second surgery.

quite a number of us (me included).

TAVR was brought up several times when meeting up with numerous surgeons, but they said despite the fact that it is not an open heart procedure, there are still many risks with that as well.
And, I am 75 yrs old with perfect health and they would go with the open heart method especially when fitting a new bigger size tissue valve.

well, and not to mention that it being valve in valve (if that's even available to you with an existing prosthetic) you'll only have a yet again smaller size diameter ... which as I read it has contributed to your situation.

So my main response I am waiting for is that anyone who or any close friends or relatives had multiple aortic valve surgeries especially the open heart method?

I had my first OHS at about 10, my second at 28 and my third at 48. My surgeon on my last operation (who was actually a team member with my surgeon who did my first two operations, but after that surgeon retired my 2011 surgeon was the head of the team) made it very clear to me that cumulative scar tissue would both complicate the risks during surgery as well as compound infection related risks (known to increase with subsequent surgeries). He made it clear that while I could choose any valve, if I picked a tissue prosthetic I'd be in a very difficult position when (being 48 then) I came to my next surgery need (at around 68).

So I picked a mechanical.

As for your situation I'm not sure that the decision to a mechanical is the best, because for starters I don't know what medications your on and if you get 20 years out of a tissue prosthetic that will put you at 94 (assuming your bio is right).

I would counsel against TAV in your case because of the existing tissue prosthetic (but hey, its an opinion).

I just had a good friends father (about your age) go in for triple bypass & a new aortic valve (which was becoming incompetent).

He recovered very well and (being an active guy irrespective of what age he was compared to) has bounced back quite well.

The risks are there, but they are not really a big obstacle. I would argue that the risks post AVR surgery with a "traditional sternotomy" would be lower and easier to manage than a TAV.

Best Wishes with your decision

 

[iren_999]

Few days from now I will visit with my original surgeon who had inserted the small valve (if he shows up). He denies the fact that my valve is too small and it is normal for my type of physique and body structure. He is ignoring my visits. So out of 5 surgeons who I last visited told me the valve is too small and not normal despite the fact that I am energetic and active, except, that I cannot walk for a longer periods of time.

Anyways, I will try and convince him to admit me into a facility for a few days to perform tests on me. If he says that I can live with this with a LIMITED lifestyle, that is fine with me rather taking a huge risk and dangers of another surgery. Even though, I love travelling, I would still choose a limited lifestyle.

Will see how it goes.

Thanks for all the support!

 

[tom in MO]

Few days from now I will visit with my original surgeon who had inserted the small valve (if he shows up). He denies the fact that my valve is too small and it is normal for my type of physique and body structure. He is ignoring my visits. So out of 5 surgeons who I last visited told me the valve is too small and not normal despite the fact that I am energetic and active, except, that I cannot walk for a longer periods of time.

Anyways, I will try and convince him to admit me into a facility for a few days to perform tests on me. If he says that I can live with this with a LIMITED lifestyle, that is fine with me rather taking a huge risk and dangers of another surgery. Even though, I love travelling, I would still choose a limited lifestyle.

Will see how it goes.

Thanks for all the support!

Per your surgeon, his behavior indicates he has something to possibly hide. I wouldn't go back to him for the time of day.

If 5 surgeons say he mis-sized your valve, I'd contact the hospital's ethic/complaints board. Hopefully a few of those 5 surgeons work at the same place. The hospital needs to decide if the problem is incompetence, negligence or normal error. They might provide some free care since it's their surgeon and their team. However, if you don't get a straight answer from the hospital with a formal complaint, you might want to contact a lawyer and/or your state medical board.

It's a difficult thing to do, but my family has taken on two hospitals in the last ~30 years, both due to negligence that led to the death of a family member. You need to pursue things so you can help protect the patients that still use that place or that doctor. One error was due to alcohol abuse by an OBGYN and the other was due to incompetence of an emergency room doctor and the hospital administration who assigned the doctor.

The case I am most familiar with is the emergency room problem, my family member's personal doctor heard her story and told her to pursue it with the hospital. Her husband received incompetent treatment and died. She took her doctor's advice and did pursue the problem. There was a formal investigation ending with a letter from the hospital indicating the reasons for the negligence and the specific action they took. She also got better than normal care every time she had to use the hospital afterwards (it's a two hospital city.) She did always say in the admissions interview that Dr. XYZ was not to provide her any care. We used to joke they had her flagged in the system as a fighter, but someone who doesn't sue. Money doesn't bring back people or solve problems, but change does solve problems.

 

[iren_999]

My new surgeon which I spoke to few day ago he said that they will perform another tests on me such as inserting a catheter tube up my heart to see it better before deciding on the surgery just to be on the safe side. Yesterday, I went even shopping with my friend and been able to keep up. However, by 4pm in the afternoon, I start to get tired. Actually, I really don't mind to live my life like this outweighing the risk of another surgery...

So I have my consulting appointment today with the original surgeon, but I have this feeling he will not be there. I have all the evidence from recent checkups that the valve that was put in is small.

However, maybe I should not blame the surgeon, because my theory is, that the valve he needed for my size originally was not available and I think that his assistant gave him the smaller valve to put in. This is just a theory, but he could of old me this in the first place.

My valve is 21mm, I am a female, weight is about 140Ibs, I'm about 5ft 6inches in height (roughly).

 

[Paleowoman]

Hi Iren - you need to make sure you show the surgeon the "indexed effective orifice area" result, which should be stated on your echocardiogram results, along with the pressure gradients etc.

PS - I would also take along the reports from the other surgeons you have seen.

 

[tom in MO]

...However, maybe I should not blame the surgeon, because my theory is, that the valve he needed for my size originally was not available and I think that his assistant gave him the smaller valve to put in. This is just a theory, but he could of old me this in the first place.

My valve is 21mm, I am a female, weight is about 140Ibs, I'm about 5ft 6inches in height (roughly).

Before my surgery I asked my surgeon about valve sizing and he told me they keep a stock of all the different sizes on hand. He said that they had to do that because for emergency operations they needed all the possible sizes readily available. In an emergency there is not time to "order a part."

 

[iren_999]

So, finally I had my consultation with my original surgeon, who now, I don't really trust to be honest here...
He finally said as well, that a surgery is most likely to be needed again if I want to live a 100% healthy active lifestyle.

He is correct on this, because I feel active and energetic in the morning and peak hours of the day, but I need to lay down and rest early periods in the evenings, which is not my usual activity. I just laydown and veg-out and watch TV all night. That to me is not normal. Its not me...And I like to travel as well, instead of living a limited life like an animal inside of a cage.

So, he let me decide and he said to me that I will be treated like a VIP...Sigh...Yeah, right...Whatever.

So that's my update for now.

 

[pellicle]

...
So, he let me decide and he said to me that I will be treated like a VIP...Sigh...Yeah, right...Whatever.

seems like he has a conscience after all (and its talking to him)
reach out if you feel like an ear and a sounding board

 

[DachsieMom]

Just for reference, I am 4 ft 10, about 99 lbs and have a 21 mm st Jude mechanical valve conduit (the valve with dacron graft). However my surgeon said he was pleased to be able to fit a good sized valve in me - so I have a feeling that mine might be large for my body size (a good thing I believe). I wonder what others have for their size.

 

[Paleowoman]

The only way to be sure whether a prosthetic valve is too small is to get the "indexed effective orifice area” which is calculated from body surface area (which is calculated by formula from weight and height) and the orifice area of the particular valve which is given by the valve manufacturers. This should be recorded on echocardiogram, along with raised pressure gradients. When I had surgery my weight was 48.5 kgs (107 lbs) and my height 163 cm (5ft 4ins) (I've lost weight since AVR due to ill health). My valve is a 19mm Edwards magna ease and is too small.

Check out patient prosthesis mismatch on the internet, here’s a pretty good and understandable discussion of various studies on it: http://www.sciencedirect.com/science...35109700008597

 

[carolinemc]

iren_999 The reason the original surgeon is saying the right things now is that he does not want a malpractice lawsuit. You did good going to get those other opinions and go with the new surgeon and speak with a lawyer about filing a malpractice lawsuit against the original surgeon. You have that right to get him on putting in a smaller valve. So sad we trust these surgeons to the do the right thing. And please talk to the head hunchoes at the hospital that surgeon practices at and file a complaint. You have the right as a patient to make them alert of what happened to you. Good luck on the new replacement. And keep us posted.

 

[jwinter]

I also learned my first replacement valve was too small. Seems like this has happened to quite a few. I am not quite sure how to feel about this as I was assured they measure several times before they put them in?

Lots of things to consider here. I will tell you the thought of lawsuit did cross my mind. I then thought about it for a very long time. First of all, and most important to me is that I am still alive and thankful to the doctors that have helped me through this. Then I thought about all the gray areas there are in medicine that led me to back up a bit. Next, I thought about how my future would be spent giving time to a lawsuit that could last far after I am dead and gone.

I worked in retail most of my working life and have learned a lot about people. I will tell you that there is also some backlash to trying to back someone, be it a major hospital or doctor or whomever, into a corner. You may THINK you get compensated when it isn't always true. Nice to your face, maybe even a million dollars or more compensation(Oh and they are insured so the cost of that gets passed back to the consumer, us) well........let your age and life lessons guide you. I have a different look on life and that is just me.

Good luck now and like others said, keep us posted.

 

[Paleowoman]

I also have too small a valve, and yes, they do measure before they put the valve in. I've even got that written down in my Operation Note so I know they did it. BUT the size of the replacement valve may not necessarily be the right size for a person's body and this is where someone can get too small a valve. As far as I understand, the surgeon should take into account the pateint's body surface area, age, and level of activity, and using the Effective Orifice Area of the replacement valve work out if, for that person, the replacement valve would be too small. Bear in mind that these replacement valves are smaller than native valves becaue of the framework and that they can't just put a bigger one in the aortic valve position because there is no give where the valve is put, it is very fibrous (the new surgeon I'm under explained all that to me). If they did those calculations in theatre.realised the valve would be too small for the patient's body size etc they could put a replacement one in the supraannular position which would enable a bigger one to be implanted or do a root enlargement - maybe both those operations carry risks ? I suppose that they think, or at least thought in my case, that the valve would be sufficient - however it turns out it isn't for me. A lawsuit would be fraught with problems as the surgeon would surely say they did what they thought best, that they did this in good faith.

 

[iren_999]

Hi Everyone!

Well, here is an another update.

This time I had another consultation with another surgeon (same hospital), and gave all my details on what happened and all my past medical documents and he looked at it. He did agree that my aortic valve is small, and therefore, he recommends that I need another OHS in the near future.

My question is, can this be corrected using the TAVR method or do I really need to have an OHS again?

He told me that this time the incision would be from the sternum almost to my stomach area.

When he told me this, I was freaked out and I am scared and need some advise.

Otherwise, at home, I do not feel any serious symptoms such as shortness of breath.