I'm scared. Just sayin... also med ID bracelets?

4.5 is still wait and see as I am doing and always having it scanned or MRI each year will allow you to always know how much it has grown if any. Also the doctors will know the right time to go in and cage that rascal up so it will be protected. Don’t let this control your life and while being cautious and keeping track of the aneurism feel confident that this can be fixed.💝🙏🏻💝

Thanks for sharing your words of encouragement. I know I'm still in the wait phase - my cardiologist plans to hand me over to surgeon once it's 5 cm. In past years I did not worry about it too much (I still had hope it might not get bigger). Now there is a very clear trend of continued growth, so since my past scan it's been much harder to push it out of my mind. At my follow-up visits I asked my PCP and my cardiologist directly, "Based on the growth trend, it looks to me like surgery is almost certain, and could be as soon as 5 years - am I right?" (I'm very short - so my normal/healthy artery diameter would be on the smaller side of the scale). Both doctors agreed with me. Previous to this last scan I could just tell myself, it might never get too big, and if it does it might be more like 20 years down the road (still would be on the young side 20 years from now, but the distance in time helped me worry less). I hear about people having dissections at 4.5 and that scares me. But thank you for your encouragement.

I will say - I hate the term "watchful waiting." It feels helplessly passive - and a bit like I'm awaiting an apocalyptic event ;). I've decided to re-frame the phase by calling it "mindful preparation" instead. Somehow, I feel like it gives me a little bit of control back.

Hi.
I understand your anxiety. I spend a LOT of time praying for peace of mind because as long as we keep our blood pressure down and practice “mindful preparation” ( I LOVE that!) we are doing all that we can with the hand dealt. I purchased a necklace instead of a bracelet and it does give me some added comfort. Also I put the info on my i-phone so that if emergency 911 is called, my info will be relayed: the problem and where to take me so as to not waste time, as well as my emergency contact and the number of the cardio- vascular surgeon who is following me.( HOPEFULLY SHE WILL BE AVAILABLE IF A DISSECTION OCCURS.) this is all I know to do. When/if the time comes for elective surgery, I have set up a patient account at the Mayo Clinic and all my data goes to my patient record there even though I have not seen anyone there yet. You don’t mention if you know whether you have a tri-cuspid or bi- cuspid aortic valve( can tell on echocardiogram ) and whether you had the genetic profile done to see if you have a genetic predisposition for this. ( I used Invitae.com, pd. $ 250.00 for 92 possible gene connective tissue issues. This is not me telling you what to do, just an option; You can go to their website to proceed with or without a doctor… they have a clinical geneticist). The answers to these 2 things make a difference into when the elective surgery would be performed. I believe the majority of folks do ok 👌 after surgery. I just found out I had my aneurysm in April (4.2) and have been struggling with anxiety since… however information and ( for me) my relationship with God is giving me peace… also deep breathing helps. A man in this group suggested “square breathing” which has been helpful to me as well, because when my anxiety increases, I have labile hypertension( spiking BP) which is our enemy. Anyway, I have posted pics of the front and back of my necklace( I just goggled medical ID jewelry) . Praying for your peace of mind and a long, happy career, free of health issues. ❤️🙏🤗

Are you able to go on disability?

Thanks so much - very helpful. I love that you shared the pictures too - nice looking necklace! I do have tricuspid, so that is good. I was unaware of that option for genetic testing though. I am going to look into it because I do have hyper mobility syndrome (which is probably why I have early onset OA) - no one has done any formal diagnostic tests to determine anything beyond that though. Thank you so much! Praying for peace for you as well.

Nope (can't go on disability). I was recovering from head injury and then was going to school too long (haven't been able to pay into the system long enough & recently enough to qualify).

The genetic panels can be very limited and there are MANY hypermobility syndromes. They will likely only check for the obvious: Marfan, LD, EDS. There are disorders of other types of collagen, like collagen 6, that can cause both your OA, hypermobility, and cardiovascular conditions. I've had the standard aortic aneurysm genetic panel through Invitae. Nothing of major significance there. However, I've had my entire genome sequenced and have learned I do have a lot more going on with collagen 6 and 12. I'm going to ask for the Invitae (since that's what my hospital uses) Comprehensive Neuromuscular Disorders Panel. I know I'll pop "hot" for Type VI Collagenopathies and Limb Girdle Muscular Dystrophy, because I looked up those variants in my existing results. Those results may help with Ortho and the neurologist my cardiovascular surgeon had me go see, too.

But medical practices/hospitals/doctors often have this thing of, "Well, we didn't order that and we use So-and-So." There are some legit reasons for this. You want a CLIA-certified lab for genetic testing, which I had in my original testing. So I'll be ordering some duplicative testing.

Have you looked into endovascular stent procedure.

I can feel your pain. I myself have had a number of surgeries which I feel like has led to my aneurysm with an underlying soft tissue disorder. I have had nine major surgeries now and I am 57. I started with my first surgery at age 40 but I have determined that I am not going to let this rule my life, so although I worry sometimes, I won’t allow it to bother me all the time. I also have thought about an ID bracelets, but I did put it in my medical health on my iPhone. I am in a unique position of being in a very rural area, and if mine were to burst, I would likely be gone before making it to a hospital, so I enjoy each day and do the best I can to live with the uncertainty and the regular angina.

Hi I was advised that I should be wearing a medical ID. To let EMS know that I’m on Coumadin and it’s due to a mechanical Valve surgery in 2012. It would also notify them that I have an abdominal aneurysm. It would also say that I have hypertension and I am a diabetic type two.
My sister’s name and number because she is my emergency contact person. And of course, my aneurysm.
It’s amazing how much information you can have etched into a medical bracelet.
I’m 98% sure my insurance would pay for it. I’m presently looking at different types.