dixitworld
Well-known member
Is your husband bicuspid ? The report you said means the same dissection.. but dissection is not always fatal and can be surgically or medically managed but definitely not anyone would like to have
Bicuspid aneurysm size guideline
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I think I’d be going for surgery. If you think your surgeon is being too aggressive (despite following guidelines established by the cardiology field as a whole), get a second opinion to either set your mind at ease or confirm your worries that your current one is too aggressive.
I just went through this for MVR and tricuspid repair and the second surgeon completely agreed with the timeline and care plan. Which again were aligned with American College of Cardiology Guidelines providing the field’s best understanding of risk management. Unsurprising my cardiologist agreed with the guidelines since he basically wrote the valve part.
Anytime you want to go against the medical guidelines I would ask yourself if your reasons for wanting to diverge are truly valid. Yes you have a prior surgery and are Indian (I am confused about the Indian part and why it might matter, you could clarify if you think it’s important) but other patients do share those characteristics. It doesn’t sound like your docs are saying “oh yeah in YOUR case then forget the guidelines.” They are being insistent because, per guidelines, the risk of waiting outweighs the risk of surgery, the progression of the aneurysm past a certain point becomes chaotic and unpredictable, and the cost of being too late on an aneurysm is sudden death. At age 38.
While I obviously wasn’t thrilled to go through OHS and I’m sure facing your second is quite a bit worse, I went with the guidelines my doc’s personalized recommendations and told myself at least I am young and relatively strong and those odds are in my favor (I’m 56). Surgical mortality does include a lot of elderly and frail patients so you will always have youth in your favor as a young patient.
Sorry you’re having to deal with this again.
I just went through this for MVR and tricuspid repair and the second surgeon completely agreed with the timeline and care plan. Which again were aligned with American College of Cardiology Guidelines providing the field’s best understanding of risk management. Unsurprising my cardiologist agreed with the guidelines since he basically wrote the valve part.
Anytime you want to go against the medical guidelines I would ask yourself if your reasons for wanting to diverge are truly valid. Yes you have a prior surgery and are Indian (I am confused about the Indian part and why it might matter, you could clarify if you think it’s important) but other patients do share those characteristics. It doesn’t sound like your docs are saying “oh yeah in YOUR case then forget the guidelines.” They are being insistent because, per guidelines, the risk of waiting outweighs the risk of surgery, the progression of the aneurysm past a certain point becomes chaotic and unpredictable, and the cost of being too late on an aneurysm is sudden death. At age 38.
While I obviously wasn’t thrilled to go through OHS and I’m sure facing your second is quite a bit worse, I went with the guidelines my doc’s personalized recommendations and told myself at least I am young and relatively strong and those odds are in my favor (I’m 56). Surgical mortality does include a lot of elderly and frail patients so you will always have youth in your favor as a young patient.
Sorry you’re having to deal with this again.
dixitworld
Well-known member
100 percent agree. The only other thing comes in my mind is the earlier I will go for surgery more chance for another one shows up. Though I pray to God , don't give me another one ever
dixitworld
Well-known member
Other thing comes to mind current year risk is 1 percent as per this kaiser study and why to take 2 -3 percent risk of surgery
dixitworld
Well-known member
Yes and all the recommendation are for first surgery that risk of waiting is now more than surgery. For second surgery when my risk of surgery is more than first, should I be followed same guideline or diff, no one answers me.
Also for the surgical risk being told, I am told about only less than 40 yrs old first time surgery had 1 percent mortality and much higher morbidity
pellicle
Professional Dingbat, Guru and Merkintologist
Morning
Perhaps ... but I'm not sure there is much more wisdom I have than just experience and reflection. Now that I've done due diligence and given you what I believe is the best answers I can now go on to say (as you've requested more) that if you want to defer longer then you just do that if you really want to.
So, back at the time I had my second surgery I was actually right in the middle of doing my IT degree, I was about to complete the first stage (which was a diploma) and no matter what happened I could say "I got that" and could then choose to work with that or go on to complete a degree at an allied University. I was very conscious of not leaving anything incomplete.
My surgeon wanted to do the surgery in a short order, I think he wanted to do it in September, but I said that this was exactly going to be the lead up to my exams and I absolutely wanted to finish all of that before the surgery,;it was very important to me. He thought about it for a little while and he said okay here's what we're going to do as soon as you finish your last exam call up the hospital and for your surgery and we'll do the surgery as soon as we have the right valve. This is because I was having a homograph valve put into me (which was a cryopreserved valve) and availability was not like buying an off the shelf product.
He was very clear that he didn't want me to be doing too much exercise too much straining too much anything because my situation with my old valve was the statuses with high and he didn't want ventricular hypertrophy to expand giving me a bad situation in recovery and also for the rest of my life. so in that case I like you deferred even beyond what my surgeon recommended but unlike you my situation was not likely to cause my death by dissection, so I would be very conscious of your aneurysm and make sure that you follow the protocol of frequent measurements and be careful to not lift heavy things strain whatever.
If you go to the gym then I recommend that you cut your weight down to lifeably small amounts not so small that you can't feel it but not so much that you're doing any straining to lift it and do higher repetitions.
During this time before you have your surgery be aware of every day, be aware of everything and take nothing for granted, be fully alive and be fully present and be fully appreciative of every day.
I have tried to live my life in this way in the last 12 years and even with that as a base reflection on what I am doing then I still find their days when I'm not paying attention and I'm not consciously aware of myself my life and thankful for everything that I have. Especially (in my opinion) you should actually make sure you're thankful for and very aware of your family.
The next thing to remember is that you actually don't have control as a very much, the control that you have over things is actually an illusion. in reality you could get food poisoning you could fall off the gutter in a bad way into the street and get hurt you could have any number of misfortunes befall you. If you get a little bit philosophical every culture philosophy has the view that we really don't have much control over our lives. the reality is that we can choose the things that are before us maybe those choices are wise maybe those choices are emotional maybe those choices are just simply obvious. But if you are going to make a choice you should make a choice as well as you can in the knowledge that no matter what the outcomes are outside of your control.
A personal favourite movie of mine is Shawshank Redemption, in this scene these prisoners were fully present and fully enjoying every mouthful of beer and how they felt in recovery from hard work.
True Happiness is to enjoy the present, without anxious dependence upon the future. Not to amuse ourselves with either hopes or fears, but to rest satisfied with what we have, which is sufficient, for he that is so wants nothing. (*wants in this instance means simply desires something, like you want a new item when you already have a functional one).
Also by Seneca
Our emotions are a combination of two elements: an affective movement within the body and a judgement. Suffering arises when we attach judgements to these affective movements that are beyond our control. For example to love someone is within your control, the judgement that this love should be returned and should be so forever is not.
Contrary to popular belief, the goal (of Stoicism) is not to repress or eliminate the emotions, to become devoid of feelings; the goal is to attach the right judgments to them.
"we are all dying" so don't forget to enjoy the moments you have, savour even the fear (for it too is just an emotion).
Best Wishes
Yep, I get that ... when I had OHS #3 I was a bit older than you probably are (born in 1964, 3rd was 2011) and perhaps due to my prior 2 I was more confident I'd wake up.
Perhaps ... but I'm not sure there is much more wisdom I have than just experience and reflection. Now that I've done due diligence and given you what I believe is the best answers I can now go on to say (as you've requested more) that if you want to defer longer then you just do that if you really want to.
So, back at the time I had my second surgery I was actually right in the middle of doing my IT degree, I was about to complete the first stage (which was a diploma) and no matter what happened I could say "I got that" and could then choose to work with that or go on to complete a degree at an allied University. I was very conscious of not leaving anything incomplete.
My surgeon wanted to do the surgery in a short order, I think he wanted to do it in September, but I said that this was exactly going to be the lead up to my exams and I absolutely wanted to finish all of that before the surgery,;it was very important to me. He thought about it for a little while and he said okay here's what we're going to do as soon as you finish your last exam call up the hospital and for your surgery and we'll do the surgery as soon as we have the right valve. This is because I was having a homograph valve put into me (which was a cryopreserved valve) and availability was not like buying an off the shelf product.
He was very clear that he didn't want me to be doing too much exercise too much straining too much anything because my situation with my old valve was the statuses with high and he didn't want ventricular hypertrophy to expand giving me a bad situation in recovery and also for the rest of my life. so in that case I like you deferred even beyond what my surgeon recommended but unlike you my situation was not likely to cause my death by dissection, so I would be very conscious of your aneurysm and make sure that you follow the protocol of frequent measurements and be careful to not lift heavy things strain whatever.
If you go to the gym then I recommend that you cut your weight down to lifeably small amounts not so small that you can't feel it but not so much that you're doing any straining to lift it and do higher repetitions.
During this time before you have your surgery be aware of every day, be aware of everything and take nothing for granted, be fully alive and be fully present and be fully appreciative of every day.
I have tried to live my life in this way in the last 12 years and even with that as a base reflection on what I am doing then I still find their days when I'm not paying attention and I'm not consciously aware of myself my life and thankful for everything that I have. Especially (in my opinion) you should actually make sure you're thankful for and very aware of your family.
The next thing to remember is that you actually don't have control as a very much, the control that you have over things is actually an illusion. in reality you could get food poisoning you could fall off the gutter in a bad way into the street and get hurt you could have any number of misfortunes befall you. If you get a little bit philosophical every culture philosophy has the view that we really don't have much control over our lives. the reality is that we can choose the things that are before us maybe those choices are wise maybe those choices are emotional maybe those choices are just simply obvious. But if you are going to make a choice you should make a choice as well as you can in the knowledge that no matter what the outcomes are outside of your control.
A personal favourite movie of mine is Shawshank Redemption, in this scene these prisoners were fully present and fully enjoying every mouthful of beer and how they felt in recovery from hard work.
True Happiness is to enjoy the present, without anxious dependence upon the future. Not to amuse ourselves with either hopes or fears, but to rest satisfied with what we have, which is sufficient, for he that is so wants nothing. (*wants in this instance means simply desires something, like you want a new item when you already have a functional one).
Also by Seneca
Our emotions are a combination of two elements: an affective movement within the body and a judgement. Suffering arises when we attach judgements to these affective movements that are beyond our control. For example to love someone is within your control, the judgement that this love should be returned and should be so forever is not.
Contrary to popular belief, the goal (of Stoicism) is not to repress or eliminate the emotions, to become devoid of feelings; the goal is to attach the right judgments to them.
"we are all dying" so don't forget to enjoy the moments you have, savour even the fear (for it too is just an emotion).
Best Wishes
pellicle
Professional Dingbat, Guru and Merkintologist
no, a dissection is when the wall of the artery tears like a garden hose and the fluid inside just pours out onto the ground. Inside you however this means you bleed to death at a rate depenedent on the size of the tear. Depresurisation of the "hydraulic fluid" can also shock the brain (because its never experienced this loss of blood pressure) and you may actually freeze up.
There are a range of possibilities but all of them are very serious.
Good reading at this point (of this document) with good accompanying diagrams
In aortic dissection, a tear in the aortic intima allows blood to penetrate the aortic media, pushing the dissection flap into the middle of the aorta, separating the true from the false lumen. In intramural hematoma, blood leaks into the aortic media at low pressure, forming a thrombus that pushes the outer wall of the aorta outward, leaving a relatively normal appearing aortic lumen. A penetrating atherosclerotic ulcer allows blood to enter the aortic media, but atherosclerotic scarring of the aorta typically confines the blood collection, often resulting in a localized dissection or pseudoaneurysm. ... If the blood in the false lumen instead tears through the outer media and adventitia, aortic rupture will result. The incidence of aortic dissection is estimated to be 5 to 30 cases per million people per year, with men more commonly affected. Most dissections occur in those between the ages of 50 to 70 years, although patients with Marfan syndrome, BAV, Loeys-Dietz syndrome, and vascular Ehlers-Danlos syndrome, present at younger ages.
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dixitworld
Well-known member
Thanks a lot for your wisdom , I have to do surgery I know some day and definitely want to do before it hits me. I think timing is impossible to plan for. I m just thinking what is important for me to do before surgery . I have seen few patients who didn't made through the surgery and my heart cry for their family , if they would not have done surgery may be they would have lived for many more years. But this option we choose is to do aneurysm surgery on our own is so hard to control for. Currently when the surgery risk seems same as non surgical risk .. mind not able to convince itself that we should do surgery or not and that indecisiveness itself took lot of toll on me.
Lisa from LJ
Well-known member
I mentioned this before, but feel the need to mention it again. Those of you who remember Ross may also remember that his dissected at 4.7 cm. One percent sounds small until the 1% is you.
pellicle
Professional Dingbat, Guru and Merkintologist
Hi
Best Wishes
these people would usually be (some combination of) elderly, frail and having some other comorbidities) would they not?
only if you forget to add in that the risk posed by the waiting is cumulative, wheras the risk of the surgery is a point event. The risk of waiting increases with each (lets say) month; and in a non-linear way.
Best Wishes
dixitworld
Well-known member
Hi Lisa and Pellicle
No I am no way discrediting that 1 percent is serious and I understand every year 1 percent dissecting is a big number. I was just telling in FB support group 2 young member first timer surgery around 5.3 aneurysm didn't made through and died from peri operative stroke , same way one of my office senior also didn't made through the surgery who was just replacing valve.
I also know someone who didn't operated at 6 cm for 10 years and did surgery at 7cm and is healthy and happy. So life is very much not fair and when you have young family to take care of. It's just hard to convince self which way is better
First, thanks for the reference to the Kaiser study. It's nice they compiled the data.
If you choose to delay the surgery, you may want to stay near big cities. The dissection is a high emergency, perhaps worse than a heart attach. If you need help, you'll need it very urgently. IIRC, the mortality rate is 2%/hour for the first 24 hours. And the symptoms are not obvious, like "high back pain". So you may want to learn them, if you didn't yet.
I think your units are off here. The rate is 0.06-0.07 cm/year = 0.6-0.7 mm/year. I don't want to by "sticky" about the technicality. Only pointing this out because the rate might be fairly high. Did your doctors comment on this at all?
If you choose to delay the surgery, you may want to stay near big cities. The dissection is a high emergency, perhaps worse than a heart attach. If you need help, you'll need it very urgently. IIRC, the mortality rate is 2%/hour for the first 24 hours. And the symptoms are not obvious, like "high back pain". So you may want to learn them, if you didn't yet.
dixitworld
Well-known member
Yup 100 percent agree with whatever you said above, in case I would not been understanding all of above what you said I would not be crying in front of all of you .
For me the surgeon said typically risk of mortality in such surgery is 1 percent but yours is second surgery hence it is 2 percent and then 1 percent stroke and then numerous 1 percent risks of pacemaker blah blah.
I have a very young family and I am on work visa in this US country so if anything happens to me or my working condition(which will get me job terminated )they have to leave the country immediately. I was on verge of neurological collapse and went in horrible depression / anxiety in last 3 months debating all pros and cons of surgery vs wait.
I will do the surgery as I am able to convince myself and mentally ready for it.
I am just trying to get away with the death fear which will help me in choosing any direction easily.
dixitworld
Well-known member
How to overcome these fears.. can anyone guide me
It depends... What do you think would work for you? Or, what has pacified you in the past?
It was helpful for me to meditate. Which seems more or less common, if people actually do it. It was useful to go on regular walks even before the surgery. Which I'd think should help, whether or not people realize it. It was also very helpful to know the risk numbers. Just because they are rather small, sort of comparable with risk from appendicitis, even if that's not usually perceived to be very risky. But this is just how my mind works, getting calmer from knowing the information and that the numbers are small. It's probably uncommon. However, you might know what works the best for you.
pellicle
Professional Dingbat, Guru and Merkintologist
I thought I tried pretty seriously above where I said:
have you actually tried reflecting on that in a serious way or are you just "seeking some magic injection" like morphine where you don't have to do anything yourself?
That's not how life actually works.
Best Wishes
Are you able to take the medical leave you will need with the work visa you have, and you and your family can stay? Do you have the health insurance you need? and do you prefer to have surgery in the US? Not sure if your job is meant to be long term and what rights and protections you have.
For me I have my own business and I lost my two biggest clients due to the need to take time off (both before surgery due to declining health and afterward to recover, I had surgery 10/16). My job is not protected for medical leave because I am a contractor with my own business. Anyhow obviously totally valid and crucial to plan for how surgery impacts your work and residency.
In terms of raw fear of death two things have helped me. First was during a prior health crisis with the valve I had to have an emergency C section which was very dangerous for me and my twins and I knew chances of death were high (as it happened both I and one of twins coded during the delivery so yes it was very serious). But right before I went into the OR I felt an unexpected and strong wave of calm and reassurance wash over me. Like I might die but things would still be okay. My husband, three kids under age 5 and the babies would be okay. Like things would work out for us, living or dead. I have never forgotten that feeling and I feel calm thinking about dying now.
The other is just more intellectual. We are ALL going and none of us is promised long life. Everyone suffers. We help each other through the hard times together and savor the good times together as best we can. We make decisions as best we can.
You can try meditation, journaling, listening to music, faith and prayer, talking to loved ones to self calm. Also medication and mental health therapy. All valid.
Hang in there.
For me I have my own business and I lost my two biggest clients due to the need to take time off (both before surgery due to declining health and afterward to recover, I had surgery 10/16). My job is not protected for medical leave because I am a contractor with my own business. Anyhow obviously totally valid and crucial to plan for how surgery impacts your work and residency.
In terms of raw fear of death two things have helped me. First was during a prior health crisis with the valve I had to have an emergency C section which was very dangerous for me and my twins and I knew chances of death were high (as it happened both I and one of twins coded during the delivery so yes it was very serious). But right before I went into the OR I felt an unexpected and strong wave of calm and reassurance wash over me. Like I might die but things would still be okay. My husband, three kids under age 5 and the babies would be okay. Like things would work out for us, living or dead. I have never forgotten that feeling and I feel calm thinking about dying now.
The other is just more intellectual. We are ALL going and none of us is promised long life. Everyone suffers. We help each other through the hard times together and savor the good times together as best we can. We make decisions as best we can.
You can try meditation, journaling, listening to music, faith and prayer, talking to loved ones to self calm. Also medication and mental health therapy. All valid.
Hang in there.
I was perhaps lucky in as much as I never had much anxiety with three open hearts and numerous other procedures which fortunately all worked out.
First you have to come to the understanding that you need the procedure. When my gradient across my heart valve hit 70 I needed valve surgery. When my aorta was 6.5 cm I needed surgery. (found serendipitously). When my mitral valve decompensated and I went from riding a bicycle 100+ miles/wk to unable to climb a flight of stairs I needed mitral clips. But you don't have these dramatic issues so your decision is a bit more difficult.
Medicine is not science and numbers like 2% could easily be 1% or 4% depending on the study and the patient population. If you are young and generally healthy your numbers should be on the low end.
Officially physicians should list all of the major complications that could happen. They do this for complete "informed consent" especially in the U.S. where there are significant number of law suites related to medical malpractice. Sometimes this can get overdone and end up causing undue anxiety to the patient. In other parts of the world these rare complications are not mentioned as often.
The other issue is that knowing you have this problem hanging over you, your anxiety level will be chronically high. Sometimes getting things over with is better than worrying about them.
Often people who are engineers tend to look at things like engineers i.e. very detailed and very precise. Not true in medicine. Medicine is guided by studies but not always that precise. The odds are very much in your favor and you will have to face surgery sooner or later. So if the anxiety is consuming you then you may consider having the procedure done soon. If you can put it out of your head and are willing to risk the modest odds of problems then you can hold off for a while but probably not very long. Good luck with your decision.
First you have to come to the understanding that you need the procedure. When my gradient across my heart valve hit 70 I needed valve surgery. When my aorta was 6.5 cm I needed surgery. (found serendipitously). When my mitral valve decompensated and I went from riding a bicycle 100+ miles/wk to unable to climb a flight of stairs I needed mitral clips. But you don't have these dramatic issues so your decision is a bit more difficult.
Medicine is not science and numbers like 2% could easily be 1% or 4% depending on the study and the patient population. If you are young and generally healthy your numbers should be on the low end.
Officially physicians should list all of the major complications that could happen. They do this for complete "informed consent" especially in the U.S. where there are significant number of law suites related to medical malpractice. Sometimes this can get overdone and end up causing undue anxiety to the patient. In other parts of the world these rare complications are not mentioned as often.
The other issue is that knowing you have this problem hanging over you, your anxiety level will be chronically high. Sometimes getting things over with is better than worrying about them.
Often people who are engineers tend to look at things like engineers i.e. very detailed and very precise. Not true in medicine. Medicine is guided by studies but not always that precise. The odds are very much in your favor and you will have to face surgery sooner or later. So if the anxiety is consuming you then you may consider having the procedure done soon. If you can put it out of your head and are willing to risk the modest odds of problems then you can hold off for a while but probably not very long. Good luck with your decision.
dixitworld
Well-known member
Yeah I feel why I always did the follow up to know this aneurysm from start and chasing it down from 5 to 5.5 took 7 years. I am perfectly ok to wait more but no doctor here is helping me. Everybody is saying like there is some emergency standing over me while I see nothing like that. Also even size of aneurysm is so subjective cardiologist and radiologist saying 5.7 maximum aorta size while surgeon measuring some 3 D model of aorta at 5 diff sections and measuring ascending aorta as 5.45 . I wanted to wait till 5.8 or so but not even sure what aorta size I should consider for my aneurysm. Yes living with it knowing is tough but I want to be with family and somehow I feel the risk of surgery is higher for me now considering second surgery.
dixitworld
Well-known member
Yes I have insurance from my work and yes job is little stable and I will have disability leave for sometime if everything goes well. However if something goes south , I can get fired leading to mine and my whole family legal status ceased asking to leave the country. I am not even sure what size I should consider for my aneurysm, cardiologist saying 5.7 maximum diameter and surgeon measuring 5.5 at ascending aorta
