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Trust cardiologist?
Survived an ascending aortic aneurysm dissection 18 months ago. It dissected at 4.5cm at the root. Saw cardiologist about 1 year earlier because of concern of family history . He said don’t worry it’s small, see you in 2 years and did not suggest genetic testing. Now I have 4.1cm enlargement again in ascending area. He wants to sit on it and check it in a year. Not thrilled with this because CT after my operation did not mention any enlargement in the area that I have now. Since normal diameter is 3cm, that could mean an increase of 1.1cm in 18 months.
I’ve been doing aerobic activity with a goal of 98-120 bpm heart rate, light weights and controlled blood pressure. The heart rate range was suggested during the 12 week cardio rehab program.
I have done genetic testing showing I have a mutation on myosin. At this point it is classified as unknown significance. However, the genetic counselor thinks that the family history and dissection at 4.5cm suggests a genetic link. A sibling has the same mutation. Mother and one sibling died from dissections.
Am thinking I should try to find another cardiologist but they are all in the same group. I phoned the surgeon for assistance but no reply yet.
Is my cardiologist’s approach valid or do I try to get a replacement ASAP?
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You need a cardiologist that specializes in these things. General cardiologists often blow things off because they often know less than people that have gone through this. I found that out the hard way between Dec 2023 through Jul 2024. I fired the local cardiologist and group in Tallahassee and went to Mayo in Jacksonville. The Tallahassee cardiologist said my LAD was fine. It was not. He blew off a 4.3 ascending aorta and 4.4 root that was actually 4.8 to 4.8. Plus, there were 2 serious congenital issues that he missed. I had 3 catheter procedures and open heart surgery at Mayo between July 22 and Sep 10, 2024. The surgery was over 14 hours. It isn't always just about the dilation/aneurysm.
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1 ReactionAre you fully aware of the process to repair the original dissection. Be sure that is understood. test results of hospital visits, procedures, are usually added to your patient portal, where you can read a little more about what happened.
Not all doctors are great communicators, but one year wait after a repair seems reasonable, unless they added medical devices that are monitored every 6 months that could result in additional growth on an aneurysm. (This happened to us.) Meet with him just for a consult, ask about the questions you have, and concerns. If not satisfied, ask for a second opinion. Be your advocate. Stress is not a good thing for this disorder. One of the best things we learned is this is a very difficult surgery and can cost you your life, or serious side effects that change your life, so they are going to have to wait between procedures a certain amount of time and will want to do this when is medically necessary. So, a lot of reasons they may want to wait a little longer. Tell them you need to know concerns and why you're waiting a year. Learning more may help your understanding of the time period recommended.
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1 ReactionMany general places don't always discuss things with a time like they do at Cleveland Clinic, Mayo Clinic etc. Solo cardiologists can be problematic if they don't specialize in these things. I have had several follow ups since surgery Sep 10, 2024 and am going in to Mayo on Aug 28th for a CT with contrast and echocardiogram and Aug 29th to meet with the cardiologist that specializes in these things.
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1 ReactionThank you for your reply. It sounds like you have a good network following your care. My dissection was about 18 months ago and I’ve had echos, ecg and CT all around the 14-16 month post-op period. I am fortunate to live very close to the cardiac care hospital and the top surgical team was still there when I had my dissection. However, the cardiologists in my area seem to work at one big group and can be hesitant to take a colleague’s patient for a second opinion. If you end up with one when you aren’t being heard it can be difficult switching. My GP has requested a second opinion but I’ve been warned that it might be rejected. I’m still hoping the surgeon will have a name of a cardiologist with more experience with aneurysms.
Thank you for your advice. I did read the ER, surgery and post op reports on our portal system. I am extremely fortunate to be here and not have any deficits.
I have other concerns with my current cardiologist and I was thinking of trying to switch a year ago. I did ask about the year’s wait and he deflected saying he was just doing it that way. I’m not sure I’d get anywhere with a consult with him.
I’m not aware of any devices that can cause enlargement or an aneurysm. I’m checked for calcium levels in my blood to keep the valve working well.
I’m sorry to hear about your experience. I trust you are doing well now.
I’ll keep trying to get another cardiologist. I’m hoping the surgeon’s office can suggest someone who works well with him and is proactive with aneurysms.
Getting a cardiologist that knows and works well with your surgeon is an excellent idea. I have been doing great since I have been dealing with Mayo.
Cleveland Clinic has a virtual second opinion service. I don't think it's covered by insurance and I'm sure its not cheap. Yet, it may be an option that works in this situation. I haven't used the service myself. I imagine other facilities offer this kind of service (but Cleveland Clinic is among the top-rated hospitals in the world of course).