I worry about it constantly!

So now you've got another 6 weeks to worry about it. How frustrating! Maybe you can be put on a waiting list so they'll call you if someone cancels. That's worked for me several times.

My ascending aortic aneurysm has gone from 4.7 cm on 2-11-21 to 5.1 this past January.

I have an appointment on October 5th with my cardiovascular surgeon to talk about several things:
1. What are the odds this aneurysm will kill me in the next 20 years? (I'm 54.)
2. Where, specifically, is this aneurysm?
3. What would be your surgical approach, and how many of those surgeries have you done?
4. How many die, or have severe complications, from the surgery? (You can have spinal cord damage, or kidney damage from being on bypass.)
5. I can't do beta blockers. Losartan can cause weight gain. Lisinopril causes cough. Are there BP meds that don't add to your misery? I'll go with Losartan, if I must.
6. What about Ozempic? Can you refer me to a weight mgmt clinic? My BP is starting to creep up, again. Weight loss could help that aspect, if it isn't related to the metanephrine/5-HIAA thing.

I have recurrent hyperparathyroidism (I have already had 2 parathyroid adenomas removed in March 2021.); osteopenia; facet joint hypertrophy, spondylitis at L4-5, sacroiliitis, a mid-thoracic spinal hemangioma, elevated serum B12 (>2000) but low normal binding capacity B12 (IOW, it is NOT from supplements), ANA titers (1:1280), chromogranin A, elevated IL2R, IL-6, & IL-10 cytokines; my eGFR has plummeted 30 points from January to now (103 to 73, same lab); I have chronotropic incompetence, PVCs/PACs, and an O2 extraction abnormality; intermittently elevated metanephrines & 5-HIAA; a million new contact allergies... The list could go on forever and I feel like crap all the time. Everything hurts. No energy. Poor sleep from the pain. All those labs & procedures indicate calcium issues, possible kidney issues, possible tumors or inflammation or a rheumatological condition, and I'm not going to get any answers until something lands me in an ER.

I can't get anyone in Boston to look at or address any of it. And I'm a patient with 2 serious, unexplained medical conditions.

The impression I'm getting is that it's standard procedure to wait for an overt, textbook answer to present itself, even in the face of potentially lethal condition.

I've already seen, with the hyperparathyroidism, that knowing the cause matters. If I get surgery for the aneurysm, what are the odds I keep getting them elsewhere? Will I need more surgery?

I do have good insurance and pay all my co-pays in a timely manner. So this isn't a "You're poor & don't matter" thing. But I am female, fat, & have ADHD-PI; so I'm seeing a lot of psychological diagnoses and terms in my medical records. I do request such things be removed from my record, because I can't find anything in the literature that indicates that being fat, female, and/or having ADHD causes hyperparathyroidism or ascending aortic aneurysm.

Anyway, I'm just tired of worrying about all of it.

I'm hoping the answers indicate the odds of dying suddenly are like 6%, because I'll just stop wasting money on doctors. This is too much, time, stress, anger, effort, abuse & trauma. None of this is helping my physical health and it's actively damaging to my mental health.

If I do need surgery, I'm going to Cleveland Clinic. They're the experts in surgery for ascending aortic aneurysm. And I no longer trust anyone in Boston.

I’m so sorry you have such a complicated health situation. That being said, I recommend going to the Cleveland Clinic NOW for a consultation. Especially if you are not comfortable with the doctors in Boston. The Cleveland Clinic is the premier place for cardiovascular issues. They see many, many patients with various combinations of health issues on top of the cardiovascular issues and have the best post surgery outcome rate. I live in NC and will be going for a consult at the Cleveland Clinic next month. When I checked my insurance with them I found out they are In Network, nice surprise!

Thank you for sharing this about you and your dad ! I just found out I have an aortic aneurysm it’s 4.1 cm I’m beyond scared . I will be seeing a thoracic surgeon in a few weeks for a consult . My primary said the likelihood is they will leave it alone for now and monitor . It was found accidentally while having a calcium score test this week . My dad died of one but don’t know he had one . I’m trying very hard to not let it overtake my thoughts , it’s very hard . Thanks for sharing your experience

May I ask what test was done to determine blocked arteries ? Was it a calcium score test ? I hope everything is working out for you ! Best wishes

Yes, it was a calcium score test. I have recently gotten a second opinion, & found that this test isn’t entirely accurate. I am scheduled for an angiogram in the morning. The second specialist told me that he would not do an angiogram based on a calcium score. He would do a stress test with contrast, and retest me again in 6 months. I’m going ahead with the first specialist for the angiogram, but will probably switch doctors after my follow up. Thank you for the well wishes! I hope you’re doing well!

I’ve had mine for over 10 years and was told not to worry about it.
I went to an emergency room for something else and the CTscan revealed an aortic artery aneurysm.
Not only that, the doctor said that I was going to be transferred to a trauma hospital for emergency surgery.

He said that I had a torn aneurysm and it required quick surgery.
So they ship me off to the trauma hospital and they
acknowledged the aneurysm but because it wasn’t bleeding they told me that I would need surgery on a non-emergency procedure.

They discharged me and I was told to contact my own cardiovascular surgeon ASAP . That’s two cardiovascular surgeons who seen it.
My (3rd time) cardiovascular surgeon appeared annoyed and said that it wasn’t seen in the cardiogram (but why has he been seeing me once a year prior?) Now he can’t see it?
He quickly exited the exam room and I asked him if it could burst. He said “ it could but we have ways to deal with that “ when! While it burst nobody would know what happened and think that maybe I had a heart attack and do a CPR? That would kille me because they think I had a heart attack. So it could burst in the middle of somewhere. I feel like a walking time bomb that could go off unannounced who knows when? Why didn’t the surgery get done while I was there? I don’t know. Seems like spending 10 minutes with my primary care physician is not enough. He basically ignores my concerns.

So it was 10 years ago.they said you needed surgery and since. You have monitor yourself. No treatment

I let it go all. That time because I kept being told not to worry about it. Now it’s torn! Who can I go see? My PCP will send me back to the cardiovascular who takes my aneurysm as no big deal. 2 different hospitals and 2 different cardiovascular surgeons say I should do something about it. It’s probably 4 CM or more by now.
I’ve been waiting for a burst artery since and I’m sic of it.

@andytheman I'm sorry to hear about your aneurysm and I'm not a doctor, but I've had some experience with this. I was diagnosed with an aneurysm over 30 years ago. I still have that ascending aortic aneurysm and it has increased only slightly over that time. I wanted the surgery immediately because I didn't want to worry about it for the rest of my life. But I was told that all surgery (and medications too) have risk. They can have good and poor outcomes. There can be side-effects. I was told that living with the aneursym, while monitoring the size each year, was less risky than forging ahead and doing the surgery before it HAD to be done. I learned to live with "being in limbo" with aneurysm. I'm 64 today and so far I haven't needed that aneurysm repaired. It's a serious operation. Doctors have become much better at repairing it, too. There have also been new less invasive techniques developed as potential options for some patients. For me, I decided long ago that I'd find the best Cardiac surgeon I could and put my trust in that person to help me navigate my health issue. There isn't much more I can do except live my live.
That has been my journey and my story and it has helped me to sleep well at night.
Take care.