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Managing Anxiety with an Aneurysm
Aortic Aneurysms | Last Active: Apr 23 9:19pm | Replies (104)Comment receiving replies
@sherrylou51b I've been told, since mine is slow-growing and I'm only 56 years old, waiting until 5.5 cm is okay.
I am concerned about the cardiac changes: valve regurgitation, dilated pulmonary artery, the PVCs that look like bradycardia, exhaustion upon exertion to a ridiiculous degree that keeps getting worse. But, so far, no one else is.
I have a high-titre (1:1280) ANA with AC codes 8-10 (systemic sclerosis). I am HLA-B51 positive (Behçet's). Mildly elevated chromogranin A. I have occasional elevations of C3, some cytokines, and metanephrines. The latter cause occasional BP spikes, but it hasn't happened for a while.
I had secondary hyperparathyroidism, likely from kidney issues affecting nutrient absorption. That may be related to systemic sclerosis.
I have diagnosed dry eyes. I have recently diagnosed atopic dermatitis. I have an egregious number of contact allergens. I have poor circulation (not quite Raynaud's, blue fingers and toes, not white) and poor wound healing without diabetes. Likely small vessel circulatory issues. And, of course, the debilitating joint pain, fatigue, and brain fog. The shoulder and hip pain shows up on MRI as non-erosive inflammation.
Because it's not a slam dunk clinical picture, rheumatologists have been unhelpful.
I really have tried. There is a lot of information available. I haven't even summarized it all here.
But I can't make doctors do anything. I can only make me do things. I've pretty much given up on all doctors, but need a couple to access a thoracic surgeon.
Replies to "@sherrylou51b I've been told, since mine is slow-growing and I'm only 56 years old, waiting until..."
In late 2023 and Jan 2024 I was told not to worry about a 4.7 cm mid ascending aortic aneurysm and 4.8 aortic root. I was having fatigue, bradycardia etc but the local general cardiologist wasn't worried about it. He missed a congental problem I had since I was born that had gotten critical. I had a complex coronary fistula cor medusae which had been stealing blood under physical activity and sending it straight to the main pulmonary artery. This in turn reduced blood flow to the LAD and it had a 100% chronic occlusion. In addition there was a large aneurysm on the RCA. By April 2024, me and my primary care concluded I need a second opinion and went to Mayo Clinic on Jul 22, 2024. I had an angiogram with possible intervention on Aug 6 but the complex fistula and RCA aneurysm was more extensive than they thought and thats when the found the chronically occluded LAD. I ended up with another catheter procedure on Sep 4 and open heart surgery on Sep 10. The surgeon and I discussed options on the aortic aneurysm and I told him my preferences when it had to be fixed. We agreed not to do it that day unless he opened up the aorta during the resectioning of the RCA aneurysm and ligation of the complex fistula/cor medusae. After finishing up with those and the double bypass on the LAD they took me off the bypass machine. However, the aortic root ruptured and became an emergent situation. They lost me for 7 minutes while they were getting my back on the bypass machine. I lost 3.5 liters of blood during that. Fortunately he had the material on hand for the Bental procedure because of the possibility of doing it if he had opened up the aorta during surgery. 14.5 hours of surgery and 27 hours of being in a coma, I woke up. I still have a 4.6 distal ascending aortic aneurysm because it was a bit too much that day. I go in on April 17 for a CT scan with contrast. Nov 2025 it was 4.4 and Aug 2025 it was 4.6. Other things can change that size generality. In my case it was the complex coronary fistula with a cor medusae. You have a bicuspid valve and that changes the numbers. I was having symptoms like you describe and it turns out it was from congestive heart failure. However, I sounded good on a stethoscope. Other than a slow heart rate, there weren't any obvious signs. At times there was a heart murmur, but not all the time. A week before surgery, my EKG started getting wonky, but prior to that it wasn't bad. I still have a low heart rate, but the EKG improved immediately after surgery.
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@larak
You have a lot going on that shouldn't be ignored. I am not sure who told you to wait until 5.5 cm, but for women it is 5.0 cm from all that I have read. Sounds like the you have genetic and autoimmune disorders. Behcets's and scleroderma cause cardiovascular issues. Many serious cardiac issues with Behcets. You should research this and get advise or consult for this. I am seeing my 2nd rheumatologist because the first one wasn't helpful. Have you seen a cardiac thoracic surgeon? I have seen 3 and 2 are giving me 5.0 cm, but not taking my Sjogren's into consideration, because they are "surgeons". You need to be proactive because of all your health risks, and hopefully someone will listen.