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Teapotimus

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I have never once heard of a surgeon or cardiologist telling someone to expect a mechanical valve to last 15-20 years. That is not supported by the data at all

September 2020, had a telemedicine appointment/consult with a surgeon at Providence St.Vincent. I didn't know a whole lot at the time as the diagnosis was still fresh. After going over the condition he talked a bit about bio valves, then talked about mechanical valves.

He stated "let me tell you a secret, mechanical valves don't last forever either, 15-20 years on average. My plan for you would be put in a mech valve and when that valve needs to be changed go with bio.". Then went on to talk about some patients he knows about that maintain their valves only on aspirin etc... Then proceeded to tell me I needed surgery right away.

I agree, it's very bizarre statement, not sure why cardiology is so full of contradictions when it's so often presented as a simple plumbing problem. But maybe it's just me, other people don't seem to run into these situations.
 

Chuck C

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September 2020, had a telemedicine appointment/consult with a surgeon at Providence St.Vincent. I didn't know a whole lot at the time as the diagnosis was still fresh. After going over the condition he talked a bit about bio valves, then talked about mechanical valves.

He stated "let me tell you a secret, mechanical valves don't last forever either, 15-20 years on average. My plan for you would be put in a mech valve and when that valve needs to be changed go with bio.". Then went on to talk about some patients he knows about that maintain their valves only on aspirin etc... Then proceeded to tell me I needed surgery right away.

I agree, it's very bizarre statement, not sure why cardiology is so full of contradictions when it's so often presented as a simple plumbing problem. But maybe it's just me, other people don't seem to run into these situations.
There are some really bad sugeons out there. It sounds like you got one of those whack jobs. While there are some bad ones, I would estimate that most are actually pretty decent, and then there are some that are amazing.

You can decide that all are terrible, based on your experience. But, if you want to give your future a chance, I would encourage you to seek out recomendations for good surgeons, from others on this forum.

If you are determined to believe that all medical professionals are either corrupt or incompetent, and if you have decided to just ignore the signals for valve surgery, I'm not sure that I or anyone here can help you. Another member called that passive aggressive suicide. I tend to agree. But, if you want to seek recommendations for competent surgeons or cardiologists who can give you a second opinion, there are many people here who can help you.
 

pellicle

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Hmmm

Teapotimus said:
He stated "let me tell you a secret, mechanical valves don't last forever either, 15-20 years on average. My plan for you would be put in a mech valve and when that valve needs to be changed go with bio."

well as you're blocking me there's no harm in me replying for the casual reader.

The accuracy of people's recollections is often a bit haphazard (anyone who is studying or has been to court will understand) and so this seems to me to perhaps be one of the following:
  • surgeon actually said that and then said the qualifier of "because something else may drive reoperation (aneurysm, pannus, endo ..." at which time if you're old enough we could consider putting in a tissue valve" (as that gambit didn't work)
  • the options of tissue were discussed separately and conflated
  • the guy is a nutbag
  • something else
Whats really mysterious is why having now learned this why you (pretending teapot is reading this) keep on hanging on to that opinion as if its true.

Its not logical.
1672284923492.png
 

pellicle

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If you are determined to believe that all medical professionals are either corrupt or incompetent, and if you have decided to just ignore the signals for valve surgery, I'm not sure that I or anyone here can help you.
from what I've read its common for survivors of suicides where they jump off a bridge to have a moment of clarity during the fall and decided "I don't want to die" ... most do.

Either way depending on how late Teapot leaves it he may wish he'd died after the surgery with such a poor quality of life.

SEP 🤷‍♂️
 

Teapotimus

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But, if you want to seek recommendations for competent surgeons or cardiologists who can give you a second opinion

Sure, know any in Oregon? My health insurance is fairly restrictive with their network. For example, the Cleveland Clinic isn't an option.
 
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sarashreen

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Sure, know any in Oregon? My health insurance is fairly restrictive with their network. For example, the Cleveland Clinic isn't.
Why don’t you get ROSS done with Dr. Hamamsy? If you are against mech, bio, ross then ROSS is the one which will you give good hemodynamics in next 20 years. May be you need reoperation after 20 years but now it will extend the life for next 20 years.
 

tom in MO

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That's putting it lightly.

Father in law died during a Whipple procedure. Mother in law died 3 days after a hip replacement in the rehab facility. Good friend died in her sleep one day after discharge from a bowel obstruction surgery.

Had my left hand partially crippled following a ganglionectomy at 14, constantly hurts, very reduced range of motion as well.

Couple other situations as well, but this isn't really the place to discuss those.


I was settled on the Ross, but I can't ignore the long term studies regarding it's durability pointed out here. The current crop of pro Ross surgeons claim they have made significant improvements, but there's no way to know if that's true.

I know Dr. Skillington from Australia published results out to 15 years, claiming only a 4% reoperation rate... But this seems unrealistic when compared to other Ross series. In addition, due to the nature of the Ross those results would only be applicable to him anyways. Maybe Hamamsy can claim similar results, but it's essentially just taking his word for it.

Mech valve is a no-go, my grandfather had one (also a Bicuspid valve), but had significant issues with Warfarin, as in no matter how much effort he put into reaching a target range his INR was always significantly higher than it should have been. Warfarin sensitivity?

Tissue doesn't look very appealing, unless it comes with a punch card, which I don't think it does.


More concerned about putting myself into bankruptcy, months without pay, and the real possibility of losing my job (and health insurance) which I very much enjoy.



Nah, no family.



Can't say I'm depressed, this situation (valve replacement) is about par for my life, slightly better than my mother using me as an ashtray and a bargaining chip for extra income from her clients while I was growing up.

I'm not even against the surgery, just don't like the options, and my second opinion team has managed to screw up my surveillance imaging to the point I don't know how usable it is and instilled a hefty amount of distrust in their opinions.

(Is it normal for one Cardiologist to see severe dilation of a ventricle and another say normal while looking at the same echo? Then commit both sets of measurement to record? Then have a third say that's normal? Maybe since they're all on the same team they're just remiss to point out mistakes.)

Coupled with the surgeon I spoke to having an asinine plan with the Mech valve, I'm more or less on the path to no surgery due to the sheer incompetence of the medical industry I've been so well acquainted with all my life. At least this has been my experience so far with the two "top-rated" cardiology hospitals in my state.
I understand your trepidation concerning doctors and surgeries. My first one 29 years ago left me with a sore testicle to this day, the first one also gave me hernias that needed fixing twice, the valve replacement gave me pump head, my father died of a ER doctor's error (I love putting "doctor's error" on forms that request how he died) and my cousin's baby was damaged by a drunk OB and for liability reasons the hospital fought my cousin to stop her from letting the child die. Even is you have God as your copilot and St. Peter as the surgeon, one of the unspoken fears about any surgery "Did my surgeon fight with their spouse last night and tie one on?" Life's a crap shoot, doctors and nurses are flawed humans but you cannot win w/o playing the game.
 

Chuck C

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Sure, know any in Oregon? My health insurance is fairly restrictive with their network. For example, the Cleveland Clinic isn't an option.
I could give you a few recommendations in California, but I don't know any in Oregon. I would suggest starting a new thread on the topic, asking if anyone can recommend a cardiologist and/or surgeon in Oregon.
 

sarashreen

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I could give you a few recommendations in California, but I don't know any in Oregon. I would suggest starting a new thread on the topic, asking if anyone can recommend a cardiologist and/or surgeon in Oregon.
 

Chuck C

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Teapotimus

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Suppose I'll see if anyone has any specific recommendations in my state. I used the US News ranking and chose Providence, which is where I met that wacky surgeon. Was going to setup with their cardiology team initially but the surgeon was so off-putting I didn't, and the wait for a new patient appointment was close to a year.

Got my second opinion from OHSU, number one on that list and encountered this.

First set of measurements (Same echo)
Screenshot_2022-12-29-09-27-57-49_40deb401b9ffe8e1df2f1cc5ba480b12.jpg


Second set of measurements (Same echo)
Screenshot_2022-12-29-09-31-26-87_40deb401b9ffe8e1df2f1cc5ba480b12.jpg

Screenshot_2022-12-29-09-40-45-52_40deb401b9ffe8e1df2f1cc5ba480b12.png


Story is, the PA for my cardiologist (Dr. Chadderdon) told me that I may see some slight differences in the official echo report but to ignore them, Dr. Chadderdon remeasured and found no difference from the previous echo. So I leave the appointment feeling good about everything.

Then the echo report came in a few hours later and listed severe dilation of my left ventricle and a significant difference between Chadderdon's and the interpreting Cardiologists measurements across the board.

Took my concerns to a third cardiologist on the ACHD team at OHSU and was told that was normal with echocardiograms, and that echocardiograms are really only good for measuring jet velocities. Suggested an MRI, currently on the waiting list for that, 6-8 months, looking at August 2023.

Maybe it's because I'm an engineer, but I find the discrepancy in measurement to be unacceptable, especially considering the discrepancy encompasses "normal" and "severely dilated". If the tools margin of error is greater than the tolerance being measured it's useless.

I also don't understand the explanation about echocardiograms only being good for measuring jets. Thought they were the "gold standard" test for monitoring valvular disease.
 
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Teapotimus

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Why don’t you get ROSS done with Dr. Hamamsy?

Was interested in that, paid out of pocket for a consultation earlier this year ($848 for 30 minutes of his time). Figured I could somehow get my insurance to pay for a surgery at Mt. Sinai, but the actual data on long-term outcomes of the Ross doesn't match up with what he's selling.

So that coupled with the fact my insurance won't cover his services without a fight, if at all, led me to abandon the idea.

My health insurance is very good for facilities that are in-network, but that network is only the state I live in, HMO plan. Not sure what the cost of a valve replacement surgery is, but I imagine it's quite a bit more than I can afford (based on OHSU charging $2443 for an echo), but at the same time my income doesn't allow me to qualify for any type of reduced fee's, charity care, or the ACA. Unfortunate situation on that front.
 

Chuck C

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Suppose I'll see if anyone has any specific recommendations in my state. I used the US News ranking and chose Providence, which is where I met that wacky surgeon. Was going to setup with their cardiology team initially but the surgeon was so off-putting I didn't, and the wait for a new patient appointment was close to a year.

Got my second opinion from OHSU, number one on that list and encountered this.

First set of measurements (Same echo)
View attachment 888964

Second set of measurements (Same echo)
View attachment 888967
View attachment 888966

Story is, the PA for my cardiologist (Dr. Chadderdon) told me that I may see some slight differences in the official echo report but to ignore them, Dr. Chadderdon remeasured and found no difference from the previous echo. So I leave the appointment feeling good about everything.

Then the echo report came in a few hours later and listed severe dilation of my left ventricle and a significant difference between Chadderdon's and the interpreting Cardiologists measurements across the board.

Took my concerns to a third cardiologist on the ACHD team at OHSU and was told that was normal with echocardiograms, and that echocardiograms are really only good for measuring jet velocities. Suggested an MRI, currently on the waiting list for that, 6-8 months, looking at August 2023.

Maybe it's because I'm an engineer, but I find the discrepancy in measurement to be unacceptable, especially considering the discrepancy encompasses "normal" and "severely dilated". If the tools margin of error is greater than the tolerance being measured it's useless.

I also don't understand the explanation about echocardiograms only being good for measuring jets. Thought they were the "gold standard" test for monitoring valvular disease.
It is normal to get some discrepancy between echos. This is why it is important to get them regularly, so that a trend can be observed.

I also had some significant discrepancies in one of my echos, showing my left atria dilated. All of my other echos, before and after, had normal left atrial volume. My understanding is that an MRI is more accurate for measuring volume. But, echos are excellent at diagnosing aortic stenosis AS.

You indicated that two years ago you were diagnosed with severe aortic stenosis, regurgitation and aortic aneurysm. The echo data which you shared above from May 2022 also shows a finding of severe aortic stenosis, which appears to be confirmed by two metrics used to measure severity, velocity and mean pressure gradient. At 4.0 m/s, this would put you right on the threshold of severe. Your mean gradient is 40 mmHg, would also be considered on the border of severe. If I am understanding what you presented correctly, the second set of measurements has velocity at 4.06 m/s, very close to the first one at least for that metric.

You mentioned that one had your left ventricle at dilated and the other had it as normal. I would not get caught up on this. I think that the main take away is that you were diagnosed 2 years ago with severe aortic stenosis and the echo you shared above from 5/2022 also indicates that you have severe aortic stenosis. Whether you have a dilated left ventricle or not, it is time to get very serious about your condition. It may or may not be time for surgery, but you are going to want to get frequent echos and watch closely for symptoms. As stated earlier, getting second opinions is a good idea, as well as doing due diligence on where you want to get the procedure done. When I crossed the line into severe, I did not have symptoms yet. I was given the choice to wait for symptoms or get surgery immediately. My surgeon strongly recommended that I not wait for symptoms, indicating that once you have severe AS, the first symptom might be sudden death. I did not wait and scheduled my procedure within a few weeks.
 

Teapotimus

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If I am understanding what you presented correctly, the second set of measurements has velocity at 4.06 m/s, very close to the first one at least for that metric

These sets of measurements were taken from the same echo by two cardiologists at the same facility. My Cardiologist told me to ignore the official report as according to him nothing had changed.

I tried not to get caught up on it but I can't understand how two people can measure normal and severely dilated from the same image. In the case of dilation I would think surgery sooner would be warranted, but in these same notes I have the Cardiologist who performed the official interpretation recommending surgery, and my cardiologist stating no indication for surgery at this time. Just makes it difficult to trust their opinions.

My surgeon strongly recommended that I not wait for symptoms, indicating that once you have severe AS, the first symptom might be sudden death.

I seem to be getting the opposite advice, interestingly I discovered I had severe stenosis when I was 12, twenty years ago. Just wasn't told about it, had a vague memory of getting an echo done and luckily remembered where I was, dug up the report after much calling around.

Screenshot_2022-12-29-11-11-40-75_e2d5b3f32b79de1d45acd1fad96fbb0f~2.jpg

Screenshot_2022-12-29-11.jpg


I did not wait and scheduled my procedure within a few weeks.

How did you get an appointment in weeks? Took me months to get the consult with the surgeon, then months to get a second opinion from OHSU. Even getting an echo at this point is 4-6 months in my area.
 

Chuck C

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in these same notes I have the Cardiologist who performed the official interpretation recommending surgery, and my cardiologist stating no indication for surgery at this time. Just makes it difficult to trust their opinions.
It is not uncommon for two experts to look at the same imagery and come to different conclusions. This is why it is a good idea to get another opinion. You have a diagnosis of severe AS, regurgitation and an aortic aneurysm, with the cardiologist who interpreted the echo recommending surgery. Given that your own cardiologist disagrees, it would call for at least one other consult in my view. From what you've shared, it sounds like your HMO is difficult, and so that may be easier said than done.

In my experience, I also had experts disagree on the same echo. My first echo had me at moderate AS, with some enlargement of my left ventricle, known as left ventricular hypertrophy. My own cardiologist said that surgery would likely be many years away, probably between 5 and 20 years away. I sought a second opinion and booked a consultation a few weeks later with the head of cardio thoracic surgery at Cedar Sinai. He had a very different opinion. Based on my enlarged ventricle, he recommended surgery right away and said that he had an opening next week. That was a shocker.

So, I sought out a third opinion and went to Scripps in San Diego. Even though it had only been about 6 weeks since my first echo, the cardiologist at Scripps wanted their own imagery done, so I got my second one. His view was somewhat in the middle of the other two consults. He said I would probably need surgery in 1-2 years, but not yet. He explained that my LVH was just mild and not severe enough to be troubling. Like my first cardiologist, he recommended echos every 6 months to monitor. So, basically, he was in between the other two consults, in terms of estimating when I would need surgery. I believe he was spot on, as I did become severe and get surgery about 18 months after that consult.

Not only did the experts disagree on how urgently I needed surgery, but the echos had some variance from echo to echo. The two echos, which were obtained 6 weeks apart had some significant differences, including one which said left atrial dilation. My previous echo and following ones did not have this finding. But, it was also off on many other metrics. For example, the findings of mean pressure gradient went like this, for my first 3 echos: 23mmHg; 40mmHg; 33mmHg. It was only with the following 2 echos was I able to see that the 2nd echo appeared to be an outlier. Ideally, it is good to have more than one or two echos over a period of time, to observe trends. There can be outliers and people sometimes make measurement errors, but the more data points, the more mistakes will stand out as outliers.

Here is what I don't understand.

You had an echo at age 12, which you pasted above, which found you had BAV and severe AS.

Then you had another one at age 30? Is that right? The standard of care is to have echos every 6 months when a patient has severe stenosis and I would think annually at a minimum. They waited 18 years? That is complete negligence.

After your echo at age 30, you were diagnosed again with severe AS, and they waited 2 years for another echo? Are there no other echos besides these two? At this point, having been diagnosed at such a young age, they should have a lifetime of imagery to see if there is a trend. But, it is what it is. Sounds like your HMO has issues with scheduling.

How did you get an appointment in weeks? Took me months to get the consult with the surgeon
Yes, I got my surgery appointment in weeks. It was in the middle of COVID also. They had an opening in 2 weeks, but I chose to get it 3 weeks out to get my things in order- I didn't want to feel rushed. Cedar Sinai and Scripps also would have been able to see me within weeks. Same with surgical consults- they few I have had I was able to schedule quickly.

HMOs can be difficult. I've had a lot of experience dealing with HMOs, as I was with Kaiser until I was 24 and now my elderly mother has Kaiser and I am here caregiver. I have found that they really try to avoid specialty consults. They seem understaffed and it can take a long time. Lots of nightmare stories with them. But, I have found that if you are persistent, they will eventually see you. I had to really push to get my mom seen by a neurologist for her memory issues, but eventually they caved.

months to get a second opinion from OHSU. Even getting an echo at this point is 4-6 months in my area.

Perhaps there is a shortage of specialists in your area. I would encourage you to push for another opinion and perhaps if you made enough noise they will see you sooner- tell them it's urgent. If echos are booking that far out, I would suggest you get your next one booked now, if your HMO will allow you to do so. You may or may not need surgery now, but you should get another echo in 4 to 6 months.

One thing that is interesting about your situation. You had severe stenosis at age 12. At age 30 you had severe stenosis and again at age 32. But, your numbers suggest that you are right on the border of severe, both by mean PG and peak jet velocity. Your cardiologist indicated that your imagery has not changed from the one you had 2 years ago at age 30. By contrast, my stenosis went from moderate to severe in 20 months. On the surface, it sounds like your stenosis might be progressing very slowly. If that is the case, maybe surgery will be a ways off for you. But, I think that you need more points of data and more consults to really know where you are at. Yes, experts can have completely different opinions. This is where you want to be your own advocate and seek other expert opinions. I would try to get at least one consult with a surgeon and at least one more cardiology consult. And, I would definitely not wait another 2 years for the next echo- 4-6 months would probably be ideal.
 

Teapotimus

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In my experience, I also had experts disagree on the same echo.

Nice to hear (odd as that sounds), I've followed many peoples stories on this forum and others and so often it seems pretty linear. I do believe this bothered/bothers me so much due to my career and education, just expected a similar level of precision as I perform in my job.

For example, I may design a lens to the nanometer level then I validate the product after it's manufactured. If I performed two measurements with as wide a variation as my last echo I would be concerned and would seek to validate the discrepancy. I know medicine isn't the same as optical engineering, but I suppose that's where that comes from.

Here is what I don't understand.

You had an echo at age 12, which you pasted above, which found you had BAV and severe AS.

Then you had another one at age 30? Is that right? The standard of care is to have echos every 6 months when a patient has severe stenosis and I would think annually at a minimum. They waited 18 years? That is complete negligence.

After my mother got sick of me and decided I wasn't useful to her she dropped me off with her parents, around the age of 6 or so. My grandparents did the best they could in regards to raising a young child at that stage in their life, but we were rather poor, and my grandfather had heart problems as well. To the best of my knowledge the echo at 12 was after a pediatrician noticed my murmur, unfortunately I can no longer ask. Moved across the country when I was 17 and didn't think about it again.

I was never told the results of the echo, never saw the report, never heard about it again. In fact on the few occasions I saw a doctor prior to 30 for anything I prefaced the meeting by telling them I had a heart murmur but it was benign, was tired of doctors asking about it.

Finished my two engineering degrees and physics masters at 29 years old and got a great job, with health insurance, first time in my life. Decided to use the health insurance and set up an appointment with a ND for a checkup. At that appointment she asked about the murmur I said it was benign, she asked if I was sure about that and I mentioned I had an echo done when I was younger but never heard anything about it. She then asked if I had that record, said no but I think I know where it was performed.

So I call around and get the report released to the ND, she posts it to the patient portal and I learn for the first time what that was about. Pretty shocked I get a referral to OHSU and in the meantime have the consult with the surgeon at Providence.

After your echo at age 30, you were diagnosed again with severe AS, and they waited 2 years for another echo? Are there no other echos besides these two? At this point, having been diagnosed at such a young age, they should have a lifetime of imagery to see if there is a trend. But, it is what it is. Sounds like your HMO has issues with scheduling.
This is correct, had the one at 12, 30, then 32.

One thing that is interesting about your situation. You had severe stenosis at age 12. At age 30 you had severe stenosis and again at age 32.

With the amount of reading I've done over the last couple years I agree. I lifted weights in highschool, football, soccer, all that. Continued to lift throughout my twenties and still today just lighter as I understand excessive straining isn't great.

Added in HIIT cardio 3 days a week a some months ago, no issues. 18 METs on the stress test earlier this year as well.

This is where you want to be your own advocate and seek other expert opinions.

I agree, just worn down from all the waiting on hold, differing opinions, fighting the insurance, no one to really talk to about it... And this is before we even get to the great valve choice debate which is a nightmare in itself.
 

csigabiga

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Suggested an MRI, currently on the waiting list for that, 6-8 months, looking at August 2023.
My echos were also very ambiguous and inconsistent. It wasn't until I got my MRI, 1 year after a suspicious echo, that is was more or less confirmed that I had crossed into severe AI and surgery was definitively on the horizon. I'd try to move that MRI up a bit (call weekly for cancelations) and in the meantime, start to consult with surgeons as you have been doing. It's true that none of the options are perfect, but they are all more than good enough that we are alive and able to debate them.
 

Teapotimus

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It's true that none of the options are perfect,

Indeed, spent many hours debating between the Ross and tissue valves. Just when I think I've figured it out I read something else and change my mind.

I will say OHSU did put TAVR on the table as well, at least as a temporary solution, so we will see.
 

Chuck C

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I will say OHSU did put TAVR on the table as well, at least as a temporary solution, so we will see.
In my view this is not a good option for a young patient. TAVR is not expected to last as long as even a normal tissue valve. Also, you will at some point need to get SAVR after TAVR, since you are young, and this is a complicated surgery with high mortality. See study below. TAVR has also shown to have higher mortality for low risk patients from years 2-5. The small benefit of TAVR is that you get back to life much quicker. But, not a good option if you plan to live 5+ more years. For the elderly patents 80+, for whom open heart surgery would be very risky, TAVR can be a very good option. For the young, it is just a bandaid, which leads to complications down the road.

BTW, Scripps evaluated me for TAVR. I was not very interested in it, but my cardiologist at Scripps wanted all options on the table. I was not eligible, as many bicuspid patients are not good candidates. Even if I was eligible, I would not have chosen this option.

"When heart patients undergo surgical aortic valve replacement (SAVR) after transcatheter aortic valve replacement (TAVR)—or they unexpectedly need to be switched from TAVR to SAVR in the middle of the procedure—there may be a high risk of in-hospital mortality."

 

Teapotimus

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In my view this is not a good option for a young patient. TAVR is not expected to last as long as even a normal tissue valve.

I agree with this, would just be to allow me to be in a better position, but this remains undecided.

Tissue in people my age isn't great period. ~~50% chance at reoperation at 10 years with a SAVR valve. It's been impressed on me reoperations in general are to be avoided if possible.


Then there's the Ross, but I'm also unconvinced by it's durability, not to mention no one in Oregon offers it.
 
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