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Dealing with multiple aneurysms.
I am dealing with multiple aneurysms, currently, aortic arch, descending aorta, abdominal aorta, iliac aneurysm, celiac pouching. I have had aortic arch and descending aorta repaired. Dr. Are left baffled, all tests so far for disease have been negative.
I am working very hard to cope, but have limited support. Any advice for coping with a rare disease or the life threatening challenge of aneurysms would be greatly appreciated.
Thank you
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So sorry that you are having to go through all of that. One thing I have learned is that Medical practitioners don’t have all the answers. Sometimes there is just no explanation that seems logical. Be proactive but know that God is with you all the way.
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1 ReactionI appreciate your support and kind comment. Thank you!
I’m finding that one of the best things I’ve tried is to reduce any sources of inflammation, which you may be already doing. This most recently included eliminating milk and yogurt not because of the lactose but because or the casein protein. What i experience is that my body is not having to fight these hidden allergy-like reactions which I think sap your energy which needs to go to supporting your health. I’m sorry that you’re going through this but you’ve already done a huge amount towards helping your health with the two previous surgeries, you’re doing a great job taking care of yourself.
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1 ReactionI am not a physician or expert but one option to possibly consider is to contact and visit with specialists in this space. I have being followed up by the Baylor Cardiothoracic team for my ascending aorta (now 4.2 cm) but any similar team in other major hospitals noted by others in this blog would probably be able to provide advice. They tend to treat issues related to the aorta top to bottom. Their link is below and has some good information.
https://www.bcm.edu/departments/surgery/divisions/cardiothoracic-surgery
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2 ReactionsThank for the information, I will definitely look into the info on the site.
Wishing you the best with your health situation, sounds like you’re getting great care.
I was recently diagnosed with 3. I had emergency surgery in February to fix the 7.9 abdominal AA that was starting to rupture. I have a 6.0 Ascending AA which will be discussed in September after I’m healed up from the first surgery. No genetic history. Not sure why it happened. 51, athletic, and was never smoked. I try to keep my BP dow, walk 10k steps, and eat right. All I can do in my control. I used to spend hours googling and as far as I can tell, there are no answers that are going to make this better for me. It’s comforting to know I’m not alone and I wish you and everyone on this support group all the best. Take Care and God Bless!
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4 ReactionsThank for your message. I’m sorry you are dealing with so many unknowns, that in itself is difficult.
It sounds like you are doing everything you can physically and nutritionally. I have no genetic history in my family either, extensive tests have all come up negative.
I am trying to frame a life around my this health condition…I’m just so grateful to have the doctors that I have.
I wish you well, please keep me informed about your condition, I will continue to keep you in my thoughts.
Firstly, that is a lovely photo. You look great!
Secondly, I am going to suggest getting your whole exome sequenced. Your entire genome. Invite has a whole exome panel that will list all of your pathogenic variants. Doctors usually only run panels for a small number of connective tissue disorders when they do genetic panels for aortic aneurysm. This misses many conditions, including some other connective tissue disorders and some kinds of vasculitis.
It's looking like I have Behçet's. No one would have called that. I'm a white woman of Northern European descent. It happens, but it's rare.