1. < Aortic Aneurysms

TITAN:SvS Study - Ascending Aortic Aneurysm

Posted by bitsygirl @bitsygirl, 5 days ago

FWIW, I ran across the study linked below that is looking at surgery vs. surveillance for patients in the 5.0-5.5 cm range. It's for ascending aortic aneurysms. Looks like there are many locations across the US that are still enrolling. Here's the link: https://clinicaltrials.gov/study/NCT03536312

Participants do not get to choose surgery, but are randomized (flip a coin) to surgery or surveillance. If you cannot find a surgeon that will operate on your 5.0cm aneurysm, you would have a 50% chance to get it repaired. Yet, if you choose surveillance, you might be (at least ethically) obligated to wait until it's 5.5cm. I'm not sure.

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

smithrod549 | @smithrod549 | 3 days ago
In reply to @bitsygirl "Wow, you have been through the wringer. I'm sorry you went through that. I can see..." + (show)
@bitsygirl

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.

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Thank you for your insight, I was not disparaging the ethics of the surgeons, as much as that of the MDA, and government influence due to Insurance companies refusing to cover said operations until the last possible moment,
The remark regarding the resume was regarding the surgeons not willing to do the operation at the demand of the patient. Regardless of what a bunch of money managers at an insurance company decides is best for them. The resume comes into effect, that it would show up in his records for ignoring the orders of the insurance companies and even the hospital management.
My point is, I understand the risks, I accept those risks, and if it's God will I expire then so be it. I'm ready for whatever the outcome is.
Just want to get on with my life without having to play safety first, whats to heavy to lift, or is that gas in my ass or should I ruch off to the emergency room.
Oh, I have a lower aorta at the main artery, one of my doctors called it a hypo aorta because all main blood vessels come together there. When it busts I will not even realize it, because within 10 to 15 seconds I will be history.
Again thanks for your kind thoughts, Don't worry have no plans to stop fighting, When and if the time comes then the fight will be over. Have a great year, and may "GOD" always have a light in your path.

REPLY
Lara K | @larak | 3 days ago
In reply to @bitsygirl "Can you summarize the ARISE study? How are they repairing the aneurysms? When will in conclude?..." + (show)
@bitsygirl

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?

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This is the study: https://clinicaltrials.gov/study/NCT05800743?cond=ascending%20aortic%20aneurysm&term=ARISE&rank=2

It's ARISE II, not III. My bad.

The original ARISE study was very limited. I think 19 very high risk patients. These endovascular stent placements had been done in the past for patients who wouldn't survive the open surgery. The difference with the study is the device being implanted is designed for the increased pressure of blood flow closer to the heart. If your aneurysm was in the descending or abdominal aorta, they already had acceptable stents for those areas.

This link has more info about the original study and this one. It's iffy, being one of 370, to be sure. But so is an untreated 5 cm ascending aortic aneurysm.
https://consultqd.clevelandclinic.org/arise-ii-underway-to-evaluate-ascending-aorta-stent-graft-for-endovascular-repair

REPLY
pamela78 | @pamela78 | 2 days ago
In reply to @larak "I'm trying to get in on the ARISE Phase III endivascularly placed aortic stent graft trial..." + (show)
@larak

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.

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This would be reason enough for me to avoid Mass General and I'd be writing scorching letters to the hospital administration and anyone else I could alert to this situation. Find a better hospital, a better surgeon, and ask lots of questions beforehand. It's terrible what happened to you and I'm very sorry. I worry a lot about the newfangled trend of setting specific protocols for things, despite what the patient might require or the doctor recommend. The recent brou-ha-ha about limiting the amount of anesthesia for operations is a case in point. That may have been overblown, but that notion is blowing in the wind.

REPLY
1 reply
Lara K | @larak | 2 days ago
In reply to @pamela78 "This would be reason enough for me to avoid Mass General and I'd be writing scorching..." + (show)
@pamela78

This would be reason enough for me to avoid Mass General and I'd be writing scorching letters to the hospital administration and anyone else I could alert to this situation. Find a better hospital, a better surgeon, and ask lots of questions beforehand. It's terrible what happened to you and I'm very sorry. I worry a lot about the newfangled trend of setting specific protocols for things, despite what the patient might require or the doctor recommend. The recent brou-ha-ha about limiting the amount of anesthesia for operations is a case in point. That may have been overblown, but that notion is blowing in the wind.

Jump to this post

Oh, I've tried to get Patient and Family Relations to help twice now. I even copied in the Chief Medical Officer. They never mentioned their internal ethics board, but I found it accidentally online. So I filed a complaint, specifically against their lazy rheumatologists because I had documented evidence of how egregiously bad they were. We'll see.

But I'm still going ahead with the ARISE II study, if I get accepted. I'm tired of having this hanging over my head and I am now more well aware that the cardiovascular specialist I've been seeing is not who I should be seeing. It's clear Mass General Brigham isn't taking me seriously.

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