Second opinion?
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ejc61
Well-known member
Well I got a second because I was interested in the different techniques available, i.e, right thoracotomy via port access or robotic. Otherwise, how comfortable were you with the first? Did something concern you for example.
rich01
Well-known member
I got 3. Part of that was I wanted to be in the TAVR trial, but the 2nd cardiologist over-reacted after my cardiac cath and I quickly changed to a different cardiologist. I had complete faith in the 3rd cardiologist when I met him.
All in all, from the 1st time my echo indicated a valve problem to 3 years later when it was replaced, I saw 6 different cardiologists. The 1st 3 never took the time to explain that valve replacement was in my near future.
All in all, from the 1st time my echo indicated a valve problem to 3 years later when it was replaced, I saw 6 different cardiologists. The 1st 3 never took the time to explain that valve replacement was in my near future.
I got three opinions on the need for surgery. First from my cardiologist, second from my surgeon and third from my general practitioner.
Never ever ever let someone cut you w/o two opinions from doctors who know what is needed for your condition. Three is even better. Never ever ever let someone cut you w/o researching it yourself. Back in the dark ages, I actually went to the library and got books
Never ever ever let someone cut you w/o two opinions from doctors who know what is needed for your condition. Three is even better. Never ever ever let someone cut you w/o researching it yourself. Back in the dark ages, I actually went to the library and got books
angiedavis
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I got a second opinion and ended up changing doctors. I ended up going to the Cleveland Clinic after my heart doctor just wanted to do a heart cath on me instead of open heart surgery. My original doctor made me go through all types of unnecessary tests, including a test to see if I had alzheimers ( I am 49) and repeated other tests that even the insurance company didn't charge me for later after I talked to them. It was a very scary time for me. The second doctor didn't want to say anything bad about the first doctor but I could tell he thought his practices were questionable.
angiedavis
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My dad wanted me to get a second opinion because he is a "praying man" and thought my heart would heal itself or go away. I think maybe that might be what your friends are hoping for.
almost_hectic
Well-known member
I got a second opinion and it saved my life.
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I'm a big believer in 2nd and 3rd opinions- in fact, I've had 6 opinions so far, if you count the surgeons and cardiologists that I've seen. My local cardiologist is very good and discovered my condition, but I was concerned that he was of the mindset that I was likely many years away from needing surgery and that we would not consider surgery until I had symptoms or presented with a large aneurism. That felt good to hear, but after doing my own research I was not convinced that a valve at 1.0cm2 would be many years away from needing replacement.. I self referred to one of the top surgeons in the country and he was at the other end of the spectrum- felt I should get it now and he has an opening next week. Yikes! Although I had no aneurism, he was primarily looking at my LVH and said it would only get worse so why risk permanent damage. He did not want to hear my thoughts on how I believed I might be able to reverse my LVH. Sure glad I did not listen to him, as I did eventually reverse my LVH by losing weight and dropping my blood pressure 20 points without medication and doing a little less intense exercise. I visited another cardiologist a month later and he told me that it was too soon to operate, but not agreeing with my first cardiologist that it was many years away- he felt likely a 2-3, but we would monitor and see.
Anyway, in consulting at different clinics with different cardiologists and surgeons, I recently found one that I am very comfortable with, and that is the team at UCLA. I like their team approach, which is actually based on 2nd opinions. Before giving me his opinion, the cardiologist wanted me to meet with a surgeon and then they would discuss my situation together and with me.
So, here I am 18 months after the first surgeon wanted to open me up and I've done just fine without surgery. My LVH has been reversed and my valve has not worsened- it actually measured 1.1cm2 on my last two echos. I have a team watching me closely and determined to get the timing right.
Sometimes it is very obvious that surgery is needed:-if one has classic valve symptoms or if your aneurism reaches a certain threshold. For those with no symptoms and no aneurism, there can be a lot of subjectivity as to the right time. Two things I have learned in talking surgeons, cardiologists and other patients are the following:
1) Some surgeons, although certainly not all of them, are a little too eager to cut
2) Some cardiologists, although certainly not all of them, will hold onto their patients too long before referring them for surgery.
So, I would say consult with both cardiologists and surgeons and, get second opinions if you are told that you need surgery now, but also seek second opinions if you are told that you don't need it yet. Most importantly, do a ton of research on your own. This is your life and if you invest the time, you can be somewhat of an expert on your specific condition and no one will be more motivated to get the timing right than you. When you read studies about your specific condition, print them out and bring them to your consultations with many questions.
Anyway, in consulting at different clinics with different cardiologists and surgeons, I recently found one that I am very comfortable with, and that is the team at UCLA. I like their team approach, which is actually based on 2nd opinions. Before giving me his opinion, the cardiologist wanted me to meet with a surgeon and then they would discuss my situation together and with me.
So, here I am 18 months after the first surgeon wanted to open me up and I've done just fine without surgery. My LVH has been reversed and my valve has not worsened- it actually measured 1.1cm2 on my last two echos. I have a team watching me closely and determined to get the timing right.
Sometimes it is very obvious that surgery is needed:-if one has classic valve symptoms or if your aneurism reaches a certain threshold. For those with no symptoms and no aneurism, there can be a lot of subjectivity as to the right time. Two things I have learned in talking surgeons, cardiologists and other patients are the following:
1) Some surgeons, although certainly not all of them, are a little too eager to cut
2) Some cardiologists, although certainly not all of them, will hold onto their patients too long before referring them for surgery.
So, I would say consult with both cardiologists and surgeons and, get second opinions if you are told that you need surgery now, but also seek second opinions if you are told that you don't need it yet. Most importantly, do a ton of research on your own. This is your life and if you invest the time, you can be somewhat of an expert on your specific condition and no one will be more motivated to get the timing right than you. When you read studies about your specific condition, print them out and bring them to your consultations with many questions.
michaeljquinn
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I too am similar
was diagnosed 5 years ago with mild AVS, which has progressed to moderate. I am 65y old male. Had hypertension, but with exercise and weight control (lost 18 kg) got off meds. But lately(last 12 mnths) finding that I cant exercise with the intensity i would like and the weight is creeping up again. I am asymptomatic, but with exercise or strenuous yard work, there is no pain, but really limited ability to exert myself compared to 18 months ago (was running 30miles/week at a reasonable pace - 10km in about 50min)
The cardiologist is definately in the wait and see category, but I am concerned about permanent damage.
Got a remote second opinion, which basically was the same as the first. Is it time to push for seeing a surgeon?
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" Is it time to push for seeing a surgeon? "
I would definitely seek consultation with a top valve surgeon for 2 reasons 1) it would be a good idea to get their opinion on whether it is time yet and 2) Even if it is not yet time to replace your valve, it would be a good idea to talk to a surgeon to determine if this is who you want to go with when the time comes. Discuss which procedure he favors, full sternotomy or minimally invasive and if he does minimally invasive, are you a candidate- why or why not?
If one just takes into account your moderate degree of AS alone, it would not be yet time for surgery. But, what you have described appears to be symptoms upon exertion and this would mean that, at a minimum, your condition needs to be monitored very closely by your medical team. The fact that you indicated that you have a limited ability to exert yourself most likely is due to structural changes that have occurred in your heart due to the AS. These structural changes are often reversed after valve surgery, but they can reach the point where the the changes become so severe that they are not reversible. I think this is where the art meets the science on timing of surgery and being in consultation with a world class team is key. None of us want to get surgery before it is needed, but we also don't want to let it get to the point where the changes that are happening to our heart, as it adapts to the high pressures of a narrowed valve, can't be reversed.
Hopefully some members who have been in your similar situation can give their input here as well. There are some really wise folks here in regards to these questions.
rich01
Well-known member
You might be a good candidate for TAVR/TAVI. One of the reasons they wait as long as they can is because of how long a new valve will last. The hope is to give you a new valve and it never needs to be replaced or replaced once at the most. At 65, you might need the valve replaced again when you are 75-85.
ATHENS1964
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I had moderate to severe aortic valve insufficiency, at some point I found that I was panting a little and I was getting tired more easily and the surgeon said it was time and so I went to the surgery. I knew my problem and I knew it for 20 years, at first a small inadequacy after many years of moderate and finally it became moderate to severe. But what gave the signal was the symptoms better 6 months earlier than 6 months later.
A mechanical valve should last a lifetime. It's the tissue valves that may wear out.
I trusted a cardiologist that I've seen, occasionally, since 2002. He was highly recommended by my PCP (and friend). In 2002, I had an angiogram - and he told me that my coronary arteries looked so good that I would 'never have a heart attack.' In 2018, I had another angiogram, with the same result.
Last year, my heart rhythm went crazy - multiple simultaneous arrhythmias, with the signals competing with each other, and very poor movement of the blood through my system. The urgent care center that I went to convinced me to have an ambulance pick me up and drive me to the hospital ACROSS THE STREET from the urgent care center. When I got to the E.R., they immediately put the metal patches on me, in case I needed defibrillation.
The next morning, my cardiologist performed an angiogram, and I got a stent for an artery that was '80%' blocked. The stent didn't help.
He gave me amiodorone - this didn't help, either, but turned my intestinal contents to concrete.
On my third (I think) trip to the hospital (all within a two week period), I lucked into an electrocardiologist, who was on my floor, being asked to check me out.
I had an ablation of the two nodes that he was able to get to - he couldn't ablate the third node because I have a prosthetic aortic valve.
My original cardiologist seemed clueless about the electrical issues. The only thing he was good at was popping into my room for about 30 seconds and charging my insurance $300 for the visit.
Although I didn't really choose the electrophysiologist as a second opinion, he's the one that I trust.
A month ago, I was having issues with shortness of breath - I still have this. My electrocardiologist did an angiogram -- and my coronary arteries were wide open - there was no problem with these arteries. This makes me wonder if I REALLY NEEDED the stent, or if this was just another procedure that my old cardiologist could charge my insurance for. Of course, my current doctor couldn't say.
The issue with second opinions - for anything - doctors, lawyers, maybe even auto mechanics - is that people usually go with the person who gives the second (or third, or fourth) opinion.
Additional opinions can be helpful. Not all professionals appreciate the loss that a referral of this type may be to them.
I trusted a cardiologist that I've seen, occasionally, since 2002. He was highly recommended by my PCP (and friend). In 2002, I had an angiogram - and he told me that my coronary arteries looked so good that I would 'never have a heart attack.' In 2018, I had another angiogram, with the same result.
Last year, my heart rhythm went crazy - multiple simultaneous arrhythmias, with the signals competing with each other, and very poor movement of the blood through my system. The urgent care center that I went to convinced me to have an ambulance pick me up and drive me to the hospital ACROSS THE STREET from the urgent care center. When I got to the E.R., they immediately put the metal patches on me, in case I needed defibrillation.
The next morning, my cardiologist performed an angiogram, and I got a stent for an artery that was '80%' blocked. The stent didn't help.
He gave me amiodorone - this didn't help, either, but turned my intestinal contents to concrete.
On my third (I think) trip to the hospital (all within a two week period), I lucked into an electrocardiologist, who was on my floor, being asked to check me out.
I had an ablation of the two nodes that he was able to get to - he couldn't ablate the third node because I have a prosthetic aortic valve.
My original cardiologist seemed clueless about the electrical issues. The only thing he was good at was popping into my room for about 30 seconds and charging my insurance $300 for the visit.
Although I didn't really choose the electrophysiologist as a second opinion, he's the one that I trust.
A month ago, I was having issues with shortness of breath - I still have this. My electrocardiologist did an angiogram -- and my coronary arteries were wide open - there was no problem with these arteries. This makes me wonder if I REALLY NEEDED the stent, or if this was just another procedure that my old cardiologist could charge my insurance for. Of course, my current doctor couldn't say.
The issue with second opinions - for anything - doctors, lawyers, maybe even auto mechanics - is that people usually go with the person who gives the second (or third, or fourth) opinion.
Additional opinions can be helpful. Not all professionals appreciate the loss that a referral of this type may be to them.
Images should have been taken before and after the placement of the stent. If they didn't share with you, then perhaps you can contact the hospital to see if they still have in your file as well as the report of the procedure. Maybe you had a blood clot, embolism, narrowing or a spasm of an artery that required a stent to open it?
pellicle
Professional Dingbat, Guru and Merkintologist
I never sought a second opinion for my OHS because I trusted the center, they'd done my first two.
I did seek a second opinion on the handling of an infection and found I was more comfortable with the first so stayed there.
pellicle
Professional Dingbat, Guru and Merkintologist
that's diligence right there ... and for someone in the waiting room I think that's really very wise.
I have seen and heard enough here and elsewhere (in my life) to agree with that entirely
pellicle
Professional Dingbat, Guru and Merkintologist
Hi
To me its all about finding your limits and knowing they change over time. The time between 25 and 45 is different to the time between 55 and 75.
at your age that's entirely possible from simply a lull in activity. I can say that each time I've lost fitness its been much harder to regain and at 56 I'm not what I was at 52. Perhaps I could push harder but the small muscle injuries (like the one I'm nursing in my back now) and joints slowly losing their impact reistance (wear and tear) I'm trying to scale back gracefully but keep pushing.
To me its all about finding your limits and knowing they change over time. The time between 25 and 45 is different to the time between 55 and 75.
Dodger Fan
Well-known member
I regret not getting a second opinion. I think I had my surgery too late. I ended up needing a pacemaker. My blame may be misplaced but my cardio kept kicking the surgery down the road. If you search my posts on here you probably find me complaining about it 6 years ago. People on this forum encouraged me to get a second opinion and I didn't. By the time I met my surgeon he told me I shouldn't wait more than 4 months. After surgery he told my wife that I had a "drop dead valve". He said that he couldn't manipulate my valve with his tools and that the opening was the size of a pencil eraser and he was shocked I had completed a half marathon 2 months earlier.
