Aortic Aneurysms – Introduce yourself & meet others

Hollikal here.
Updating my post.
On the 4th of Mar. I had a repeat CT and it showed 4.8cm. The cardiologist says it is stable and will repeat the CT in 6 months. To me it doesn't seem stable. Increasing in size by .3cm in a 7month span.
I am wondering when a cardiothoracic surgeon would be brought on board and consulted? My PCP mentioned it awhile back about consulting with one but she didn't want to "step on toes" by going over the cardiologist. My cardiologist hasn't mentioned anything about getting in touch with a surgeon. I would like to speak to one, but how do you find one that has experience in ascending aortic aneurysm repair. I suppose cardio's are used to patients getting 2nd opinions and it wouldn't be going over her head.
Would I want one local (Minneapolis-St. Paul area),or a top-rated clinic?
Lately I have been having issues with 'orthostatic hypotension', dizziness, fatigue, feeling exhausted after walking for 5-10 minutes. Dr's want me to walk but it is too exhausting.
At the end of March, I started on Zepbound for wt. loss. I have lost close to 20#. My PCP thinks my issues could be related to the wt. loss and being dehydrated so she adjusted my Lasix and told me to push fluids. The labs that she did last week showed all normal except for my creatine & eGFr. Creatine was 1.24(should be under 1.01), GFR - 40 (should be over 60). These values are normally reversed from what they should be but not by this much. I don't feel like drinking that much.
Is there a charge for the virtual visit at Cleveland clinic?
i didn't mean to be so lengthy but this is what I'm toying with.
Any suggestions would be helpfu.
Thanks.

@hollikal......the size you mentioned isn't in the range of size for surgery....5.0-5.5cm....but the growth rate you indicated would warrant more frequent monitoring...every 6 months. If you feel the need to speak with a cardio-thoracic surgeon, or a vascular surgeon with aneurysm expertise, it should certainly be appropriate under your circumstances, and your cardiologist should give you a referral. The Cleveland Clinic does charge a fee not covered by insurance for their "Virtual Second Opinion". Cedars-Sinai in LA also offers one, but at a significantly lower price. I would also recommend Mayo, as you're near to their main location in Rochester. You should also be willing to insist on support from your medical team for ANY information, tests, and referral to other aortic specialists who can help with your medical concerns, as long as your medical converage allows it. It is important to access the expertise from a high-volume aortic center, so you can be assured of the help they provide. I also wouldn't worry about "stepping on toes " when you are talking about your medical needs and your health! Sometimes being the squeaky wheel is needed to get the help you need!! Best wishes for success!!

My family has a strong history of ascending aortal aneurysms. My mother died suddenly from hers, which was completely unknown, at the age of 75. She had not been to a doctor in many years since, in her words, "Doctors are for sick people." Several years later, one of her brothers in his 80's died from the same aneurysm. My brother who has just turned 80 has had 3 of these aneurysms over the course of his life, including successful surgery for 2 of them. They are carefully monitoring the current aneurysm which is now at a size 5.3. Six months ago, I was diagnosed with the same aneurysm. Mine is a size 3.4, and the heart doctor I'm seeing is not concerned. However, I am to see him every six months to monitor any change in size. I am 79 years old. Neither of us have ever had high blood pressure and neither of us have ever been significantly overweight or smoked. While we understand that the condition is genetic, we still want to do everything possible to keep ourselves safe from it. Any advice or insight you can give me would be appreciated. Also, my mother's family has genetic muscular dystrophy (2 of her 4 brothers and one of her sister's sons). I'm pretty scared, although I am a highly educated person who doesn't frighten easily. Karen

@professorkrh ......at 3.4cm your doctor can be unconcerned, but given your family history, as stated, you should be on guard for changes to the size, or number of aneurysms that may appear. At the very least, become as informed as possible about aneurysms, who you'll go to for treatment and support when needed, and maintain continued regular monitoring by a cardiologist with aneurysm expertise, and understanding of familial aneurysm issues. Maintain a healthy lifestyle and keep your blood pressure at low normal level. If possible, establish a relationship with a high volume aortic center that can provide all support neccessary when needed. Knowledge is power and will allow you to keep this circumstance in manageable perspective. Best wishes!!

@hollikal......the size you mentioned isn't in the range of size for surgery....5.0-5.5cm....but the growth rate you indicated would warrant more frequent monitoring...every 6 months. If you feel the need to speak with a cardio-thoracic surgeon, or a vascular surgeon with aneurysm expertise, it should certainly be appropriate under your circumstances, and your cardiologist should give you a referral. The Cleveland Clinic does charge a fee not covered by insurance for their "Virtual Second Opinion". Cedars-Sinai in LA also offers one, but at a significantly lower price. I would also recommend Mayo, as you're near to their main location in Rochester. You should also be willing to insist on support from your medical team for ANY information, tests, and referral to other aortic specialists who can help with your medical concerns, as long as your medical converage allows it. It is important to access the expertise from a high-volume aortic center, so you can be assured of the help they provide. I also wouldn't worry about "stepping on toes " when you are talking about your medical needs and your health! Sometimes being the squeaky wheel is needed to get the help you need!! Best wishes for success!!

Hi, my name is Thaw I turned 70 past February and I had to apologize. English is my second language anyway I was told by my nurse practitioner I should have a lung scan. you don’t get to see your primary care anymore! Anyway the lung scan is good but discover ascending aorta aneurysm major at 4.8 and 4.6 and the root after that three more CT and echocardiogram was ordered by my cardiologist and thoracic surgeon. during the two months in May and June I had spoken to my cardiologist and my surgeon for 15 minute each suddenly the nurse called and said they want to do an angiogram so I asked why and she said that CT scan in the echo picture not very clear because there’s calcium buildup and 60 to 65% Blockages in LAD. So I asked what is there Complication happen during the angiogram how would they address the Aneurysm The nurse says my Surgeon be on call. So I said I would like a second opinion I’m now at Barnes and Jewish Hospital in St. Louis. Meet a meeting with the cardiologist and also the thoracic surgeon. Both are under opinion that I’m not at the point that anything that need done they would like to observation and treated with medication so I’m now on two blood pressure pills statin, and the baby aspirin and my next schedule would be in December the end of this year 2026 I am total confuse. Thanks for listening and any comment would be welcome.

@csuwannakoot Thaw. I understand why you feel confused and frightened; I survived a complete aortic dissection myself in 2015. The uncertainty can be exhausting. The reassuring part is that Barnes-Jewish had both a cardiologist and an aortic surgeon review you, and they believe your aneurysm can be safely watched for now rather than operated on immediately. At 4.8 cm, close monitoring, strong blood-pressure control, a statin, aspirin, and repeat imaging in December can be a very reasonable plan.

The possible LAD blockage is a separate issue from the aneurysm, and calcium can make CT scans look less clear or make a blockage appear worse than it is. An angiogram may eventually be useful, but you were right to ask why it was necessary and to seek another opinion before proceeding. Ask the Barnes doctors to compare every scan side by side and clearly explain whether the aneurysm is growing and what exact change would lead them to recommend surgery. For now, take your medicines, avoid very heavy straining, and remember that observation does not mean they are ignoring you—it means they do not believe surgery is safer or necessary yet. Peace.