4.5 Ascending Aorta - PCP recommends general cardiology

I was originally seeing a general cardiologist when diagnosed with an AAA, but through my own perseverance, I found a cardiologist that specializes in genetic heart issues (my 4.0cm AAA is most likely hereditary since my brother had an AAA and there are lots of deaths at young ages due to heart ailments in my father's family). The info and treatment has been like night and day between the general cardiologist and the genetic cardiologist. A subsequent scan found a dilation on my celiac artery which sent my anxiety into a tailspin worrying about other aneurysms and started a conversation with the genetic cardiologist about a possible connective tissue disorder. I have since had a brain scan and full abdominal scan to rule out other aneurysms. Thankfully I have insurance that does not require a referral to see a specialist so I was able to see the genetic cardiologist without a referral.

I have not seen a surgeon since my genetic cardiologist seems to have everything under control. He said he will want me to see a surgeon if/when my AAA is 4.5cm due to my family history and possible connective tissue disorder. My theory for not seeing a surgeon now is that I may not need surgery for may years, and if I see a surgeon now, there is no guarantee that the same surgeon will be practicing at an office in my insurance plan when I'm in need of surgery. Of course I will definitely continue seeing the genetic cardiologist on a regular basis.

In my humble, unprofessional opinion, you need to see someone ASAP who is highly knowledgable in genetic heart issues and connective tissue disorders.

I agree strongly with @moonboy. I have a 4.3 cm descending thoracic aortic dilation with “pseudoaneurysmal outpouchings” and have thankfully not had a dissection. I was also diagnosed 12 years ago with a “non specific connective tissue disorder.” The cardiologist I thought I trusted back then told me I didn’t need to be scanned any more and that there was nothing else that could be done, so I should just go live my very active life and take my statins and if it ruptured, they would take care of it then! I was at 2.9 cm then and believed her. Last year before I started on a permanent RV journey across the US, I insisted my then cardiologist order a scan just for the heck of it. I had met my OOP deductible for the year so it didn’t cost me anything. Then she flipped out when she saw the results and sent me to a vascular surgeon, convinced I needed surgery immediately! Vascular surgeon in town thankfully has a lot of experience repairing aneurysms and said nope, no surgery and go live your life doing whatever you want but come back every 6 months for a CT. Second one, it had grown another couple of mms and he’s like yeahhh, you’ll probably need surgery one day. I’m like yeahhhh, I need to get myself to an aortic disease center.

All this is to say, you have to be extremely proactive and take charge with all the knowledge you can acquire until you can get into see an experienced vascular surgeon at an aortic disease center clinic. There are many now around the US as aortic disease research is slowing advancing (especially as boomers age, you see more cases and so more research and clinics popping up). I’m mainly in Florida, so I sent a msg from the web page form to both Mayo Clinic and University of Florida-Gainesville that also has a highly rated program. I see Dr. Tomas Martin there next week. Took a couple months to get the appointment but I’ve already had the genetic counseling appointment through the UF aortic disease clinic. Dr. Martin’s clinical coordinator took care of getting all my records which was awesome. And reiterating, most cardiologists have ZERO clue about aortic aneurysms. So you have to find one with experience and interest in aneurysms and vascular disease.

I’m in Minneapolis sitting on the heat myself right now. Here’s what I know about the blood pressure thing, the only one I’ve ever found that I thought was useful was the Omron wrist cuff. You might wanna order that off Amazon and try it. I don’t really get too riled up about my blood pressure. I’m taking amlodipine, atorvastatin, and carvedilol in sufficient quantities to lower my blood pressure. At my last check up last week it was 118/74 so I’m pretty happy about that. What I’ve learned is that caffeine does not raise my blood pressure but sugar does. It’s odd to think that sugar raises your blood pressure, but it actually does. So I would definitely not be doing any sort of planking type exercises or anything involving deadlifts or anything more than 20 or 30 pounds. The goal is just to bring down the temperature in the room as it were. I Think that if you get in to see a thoracic surgeon you’re gonna have a really good clear picture of where you’re at physically and what their plan is for you.

In the meantime, you’re gonna be fine. It’s all good. I have survived for the last 10 years with an artificial aorta and I promise you this that you’re doing the right thing by staying on top of it. If there’s one piece of advice, I could give anyone who’s facing aortic issues. It’s this: do not take advice from anyone who isn’t a thoracic surgeon who repairs aortas or a person who has survived an aortic dissection. In a perfect world, you would have a thoracic surgeon who has survived his or her own aortic dissection! I really mean it.

There are a lot of medical people who have opinions about things that they really know nothing about because they’re expected to be smart and have opinions. i’m a lawyer, and I understand the phenomena of expecting that a lawyer will always have the right answer. Obviously, we don’t and neither do the doctors. You need to get in to see a thoracic aorta surgical specialist. They will take good care of you. Peace.

If your child has Ehlers-Danlos Syndrome, your PCP is off base on saying there is no connection.
Most primary care physicians and many general cardiologists are clueless about thoracic aortic aneurysms.