TITAN:SvS Study - Ascending Aortic Aneurysm

This sounds very scary to me. I don't think, well, I know I wouldn't do it. Not advice just a personal opinion.

Yeah, it's odd. A chance to get it repaired at 5.0 if you're finding it hard to get a surgeon who will, but only a 50% chance.

For a while after I was just diagnosed, I was in the camp of "I just want to get this thing fixed already". But after living with it and learning about it, I am not in the rush that I was. Maybe if I were a little older and concerned about getting it done before I can't withstand the surgery. Yet, sounds like if you stay in shape, people are older than you'd imagine when they get the surgery.

That's all well and good, each person has a choice in life. However, I still drive myself, as I live alone. Each time I get behind the wheel I have to worry about what if I sneeze too hard, cough the wrong way and it goes? According to the so-called experts in the field, When it busts and not if, I won't have to worry about it as it will only take 10 to 15 seconds for me to bleed out. Well, thank god for that no pain. I'm driving down the highway at 60 miles an hour, the city street at 20 or 35 miles an hour, its a school day or just turning into a parking lot with people all around. Who dies with me? One of your family members, your son your grandson, or daughter, your wife, your dog, or even you.
My question is, all these so-called experts know it's going to grow and it's not going to get better without medical treatment. So why force the subject to wait until there's no choice but to operate? They could have had an operation at the time of the finding. In most cases 10 years earlier in life, when you're younger and healthier.
My question is, if you have cancer, are you going to wait around for a couple of years to see how it goes before, you decide to go through the treatment to try and cure it, some expert says we have the knowledge and power to do it NOW!, Let me tell you between the Kemo and the radiation and after effects, this operation is nothing, It won't come back in a couple years and put your though all the pain of doing it over.
How ask how I know, go on, ask me.
3 years ago I was in perfect health, with no meds besides 10mg of Atorvastatin Calcium for Antitox or cholesterol, and they discovered a small lump in my neck, did a test, and came back with cancer. 4 months later, going bolded, no taste buds, no salivary glands and it kills my thyroid gland. That was 2 1/2 years ago. Still no taste, or saliva, and my meds are 10mg, for antitox now a Thyroid 25mg pill once a day. Health wise everything is grand, no heart, blood, or weight problems. Nothing but the stinking aortic aneurysm,
Lived, with the worst that GOD can hand me, Fed up with living on 6 to 10 bottles of ENSURE a Day or protein blend mix. With no taste or flavor. Plus 10 to fifteen bottles of water a day to stop dry mouth. And you think a few days or weeks in recovery for an operation to save your life is too much. I promise you it's nothing, I spent two years recovering from my military issues.
Yes, it is risky, but the only ones they are protecting with the wait is themselves. If they screw up the operation, it will look bad on their resume. Or won't get paid, this way they tell themselves, well I did everything I could for them, and they just got unlucky and passed before I could operate. Or hey, they refused to do it earlier and I could have saved them.

Wow, you have been through the wringer. I'm sorry you went through that. I can see how you'd be nervous after that.

In defense of the surgeons, I don't think it's as simple as protecting their resume. They're people too, so it's hard to make generalizations, but I believe they work to try to do what gives the best possible outcome. They wait until the odds of a bad outcome from the surgery are lower than the odds of a dissection. If they operated on you before that point and you had a stroke and were debilitated for the rest of your life or you died, then they would be forever thinking that they should never have operated and odds are you would have been fine. For my 2 cents, with the relatively serious issues I have now, I only thank god that there are people out there willing the go through the lengthy process to become a surgeon and then are willing to take the responsibility of my life in their hands. I am not up to those demands. How is anyone? It's almost miraculous.

The odds equation depends somewhat on where you get the surgery. Cleveland Clinic, for example, has a very low rate of complications. I'm not sure where your aneurysm is at, but you may be able to find someone to operate. I posted this for people that might want to use it as a way to get surgery earlier than their doctor is currently willing to do.

It's a very individual journey. I hope things go well for you. It sounds like you have earned some good luck/experiences.

Thanks for your good comments. I have an aneurysm in my aorta. It’s in a very bad location. so operating on it is a little sketchy however over the past five years it has only increased 1/2 cm it is getting rather large but it’s 79 years old. I think I’m gonna try to exercise more eat right and hopefully I’ll get another five years without too much increase. My problem is my high blood pressure which I’ve been able to successfully control through meditation exercise and breathing I do not want to go on blood pressure meds. I’ve been subscribed a beta blocker to help my aneurysm not convinced that’s a good idea. I’m looking for other message to avoid taking beta blockers. Good luck out there.

I don't know for sure, but it may be that insurance companies won't cover the cost until you reach 5.0 or 5.5. I hate thinking that some pencil pusher sitting at a distant desk is making decisions about my life or death. I also think doctors weigh the odds. If the risk of waiting is worse than having the surgery, they go in. I'm just guessing about all this but unless someone changes my mind, this is what I assume is true.

I'm not on a beta blocker. Can someone enlighten me? Should I ask my cardiologist about that?

I'm trying to get in on the ARISE Phase III endivascularly placed aortic stent graft trial through Cleveland Clinic.

My ascending aortic aneurysm is just above my heart, not into the branched arch. It is 5 cm. And I'm pretty sure an open thoracic procedure would kill me because Mass General Brigham prizes antibiotics above its patients.

I had a bad surgery in 2018 that resulted in an infection, a tunneling wound with 2 or 3 months wound care, 3 suture site hernias (abdominal), and a slide into vastly increased autoimmune issues.

The surgeon wouldn't listen to me about a longer duration of antibiotics for the s.aureus and s. marcescens infection. He also blew the timing relative to first cut with the administration of IV antibiotics.

Subsequent doctors at MGB wouldn't listen either. To be fair, they were not involved in the original fiasco. That was in Maine. Anyway, I've had two procedures since that resulted in infection and did not have to with more aggressive antibiotics and wound care. I suspect my skin biome changed a lot as a result of that first surgery. And I clearly have some autoimmune/autoinflammatory condition going on.

I don't know if I can do anything about that because I can't get anyone to acknowledge it's a possible issue.

I'm terrified of an open procedure for that reason. I'd rather be a guinea pig in a Phase III trial.

Can you summarize the ARISE study? How are they repairing the aneurysms? When will in conclude? Sounds like you've determined the results are promising?

I understand your concerns, believe me, I have been feeling the same "Just another Guinea pig"
and agree with you "I can't get anyone to agree, let alone tell you the truth, they act like they are dealing with children instead of people with a brain and life expenses and can't handle or understand the issues. The problem is the insurance companies do not want to put out the money for people in their 70s or 80s or older, their bottom line is, delay, delay, delay, they're just going to die anyway, so why waste the resources? So fed up with the excuses coming from these hypocritical asswipes, that fail to live up to their so-called oath.
The Hypocrisy of Hippocrates: Ethics from Medical Oaths
If a doctor’s responsibility is to do “no harm,” One representative facet of medicine focuses on the idea of pain and the obligation of a physician to reasonably attempt to ease the pain or worry of the patient. Especially for patients they deemed terminally ill,
Thus, the classical Oath of Hippocratic Oath involves the triad of the physician, the patient, and God, while the revised version involves only the physician and the patient, reliving the care.
Oath of ethics historically taken by physicians
The Hippocratic Oath is an oath of ethics historically taken by physicians. It requires a new physician to swear, and the pledge is still recited by doctors today. The oath requires physicians to respect the hard-won gains of those physicians in whose footsteps they walk and to gladly share such knowledge with their patients.
Historians widely recognize the Hippocratic Oath as the first-ever delineation of medical ethics. It is still used by 56% of medical schools today. This oath immortalized the idea of non-maleficence or "do no harm."
I, have read several versions of it, and nowhere does it say, but lie to your patients about why they should wait, do not tell them your insurance company won’t pay for it, because it’s too risky. Just keep them coming back and or using and testing different drugs and ideas, in other words false “HOPES”
Sorry, didn't mean to get so long-winded about this.
My prayers and thoughts go out to you and yours, that all are treated more fairly and honestly by this failing program our government allows them to get away with.