Aneurysm's elsewhere in body?

I had ruptured brain aneurysm in 2012; clipped; survived 8 years and found another; but before it ruptured; that was clipped. I have a very proactive cardiologist. She suggested lets check everywhere for aneurysms. On my last area; my stomach; they found one on my aorta. At this point its too small for any surgical intervention. It is 3cm. I feel like I am just waiting on a rupture. I will have another check an MRA in three months. Doesn’t help the nerves though. She also referred me to genetic testing. I have a bicuspid aorta; which sometimes if you have that aneurysms will appear on your aorta. I am almost 58; healthy, don’t do anything harmful to my health; so I wonder why me. I just want to know has anyone else experienced aneurysms throughout their body beside the brain? I am so grateful for my doctor and her being so aggressive and again saving me. But the stress and anxiety that comes with discovering one and nothing can be done until it reaches a certain size is more than i can handle. I will be discussing with a vascular surgeon soon; my past rupture in my brain; my aneurysm was small; i would think if I had a rupture of a small aneurysm in the brain; the aortic aneurysm could be surgically fixed because i rupture with them smaller. Let me know what everyone thinks on this. Thank you for any input!!!

Greetings @Uconn2020 ,

I am right now waiting on the results of my genetic testing and had MRAs of the pelvis, abdomen and chest done last week. I underwent clipping for an unruptured blister aneurysm in 2016 which needed to be retreated with flow diversion in April 2021. I have a second aneurysm, a Chiari 1 malformation, a left frontal lobe venous malformation and a duplication of the left vertebral artery. I am hypermobile, low blood pressure, flat feet, high palate, crowded teeth, and a whole variety of other small things that lead us to believe I have one of the EDS or one of the Marfan’s subtypes. Typically EDS and Marfans also have very long arms and legs. Loey Dietz tends to create developmental delays. I do know that AAA are not necessarily from a genetic disorder. They are usually worried about thoracic ascending aortic aneurysms with the connective tissue disorders. However, you do have a bicuspid aortic valve, so I am glad they are sending you for testing! My father had an AAA and my maternal grandfather had an AAA dissection. They both smoked and were a bit overweight. It seems that some develop AAA from environmental issues (smoking, obesity etc) and some are genetically based. Even in patients with Marfans, they typically do not do surgery until the aneurysm reaches 5 cm. I know that sounds HUGE to us brain aneurysm folks, but I guess it’s not. It sounds like they are keeping very close watch over you! This is very good! I am so sorry you are anxious, and I totally understand. I have mild dilation on my thoracic ascending aorta and they also found incidentally a 3.6 cm lesion on my liver and 2 smaller indeterminate lesions when they were doing my pelvis/abdominal scan. The radiologist thinks the larger lesion is FNH and I truly hope it is! But right now, I am super nervous and have to have another MRI with a contrast called Eovist that will help light up my liver. I guess FNH (focal nodular hyperplasia) is totally benign, but there are researchers that believe they arise from an arterial venous malformation. Others believe it’s a combination of a bunch of things including OCP use. I have been on OCP for over 30 years.

Please know I am thinking about you! Let us know how you are doing!
Kim

I too had a brain aneurysm (Circle of Willis) and now have 2 abdominal aortic aneurysms. Been waiting 10 years for them to get to 5. Feel like a time bomb. Now 64 with other health issues. Probably won’t be a candidate for surgery. I wish you luck!

@Iamdonna have you been told you are not a candidate for surgery? My father had his AAA repaired in 2017 at the age of 80. He smoked for years and is hypertensive, diabetic, hyperlipidemic and has COPD and they still put a graft in his. He was on the watch and wait list for many years. They say AAA are not necessarily related to brain aneurysms, and are caused more by lifestyle than genetics, however, it seems that in some families there is a correlation. So who knows? Please don’t give up on yourself! I know having two at 5 cm has to be a bit unnerving but from what I have been told they only repair at 5 if you have Marfan’s, Louis Dietz or EDS. I only have mild dilation on my thoracic ascending aorta, and I will be honest that I am a bit annoyed as this adds another 6 month-1 year scan to my life that is already filled with tests, tests, tests. We are all on this journey together, and encouraging one another is so important. I am here to encourage you!

Kim

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Thank you both for your experiences…Waiting is the agony we have to endure. With my AAA they say it has to do with having a bicuspid aorta; a birth defect. I eat healthy, never smoked, work out…blood tests are great; blood pressure low. I have my appt scheduled with the vascular surgeon have to wait till 8/18 but i got it!!
We can’t give up on ourselves; we fight through this; but the upside is that we are aware of what we have. The monitoring mentally wipes me; but at least we know.
And Donna, I said those exact words to my doctor, i am a ticking time bom$!! And someone as anxious as I am, not sure i can wait it out and function normally.
Try to be calm; I say that; but I can’t. It monopolizes every thought I have.
Thank you both for sharing. I love that we have this forum to vent; learn and share.
Nancy

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I had a brain aneurysm rupture in 2005. At that time 7 other brain aneurysms were found and an abdominal aortic aneurysm. It was monitored for 10 years and then a stent was placed. Also my father had an AAA that was monitored and never needed to be repaired. He died of other causes at age 87. Be well!

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Thank you to everyone that replied to me and for your support. No I haven’t been told I am no longer a candidate for surgery. I have several doctors through out these years all with different opinions to my treatment. Early on I was told open repair only because of its shape. Then a new one said he thought he could do it up my leg. Now I have another doctor that says because of the shape he can do some new procedure where they make me a custom fitted (stent- maybe). I have never heard of this before have anyone? I mentioned never being eligible for surgery because my weight is down to 87 pounds.

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@Iamdonna, I haven’t heard of a custom fitted stent, but there’s a lot of things I haven’t heard of… I know myself and at least one other member have a newer type stent that was originally developed for cardio patients. Did you inquire to its name?

All the best,
Moltroub

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Yes, I actually asked my daughter again. I have suffered from short term memory loss since I had the brain coiling 20 years ago. Anyway, the procedure is called Fenestrated Endovascular Stent Graft

for those patients whose aneurysms are too close to the arteries that feed the kidneys, endovascular graft placement has not been an option because the stent graft itself would block blood flow to the kidneys. That has changed with Cook’s fenestrated endograft – the first in the world to incorporate custom-made openings to suit the patient’s anatomy. These newly FDA-approved devices feature small openings and can be strategically positioned to allow blood to pass into the arteries of the kidneys. The Fenestrated Endovascular Stent Graft is inserted through an incision in the groin and guided into place using X-ray images.

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@Iamdonna isn’t medical technology fantastic! I’m really happy we have both lived long enough for the new developments!:grinning_face_with_smiling_eyes:

Thanks for sharing!
Moltroub

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Saw your post… I also have 5.5 abdominal aneurysm. I had a brain aneurysm almost 20 years ago that was coiled.
I have been waiting for about 8 years for the abdominal aneurysm to get size (5) for repair. Throughout the years drs have talked about different repair possibilities.
Now that I am at the point of repair I was informed that open repair is my only choice. I am scheduled for August 10, 2022. I am terrified! My very first vascular doctor had told me I would only be able to have open repair however since moving and seeing other doctor’s they disagreed…. My first vascular doctor was indeed correct.

Glad to see you update us, thank you! Hate you have to bite the bullet and have an open repair. When is it scheduled?

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I am scheduled for open repair August 10. Currently waiting on heart, lung doctor to give me the go ahead. Heart doctor will not give approval until I have a Heart Cath done. He is questioning heart blockages. Lung doctor appointment on Aug. 3. The heart cath is set for July 27. Thank you for responding as most of the time I feel very alone with this. My children are very much there for me but as their mother and only living parent I try my best to not burden them.

Support is what we are all about! Although we all come here because of an aneurysm, we are still humans and often don’t get just one issue in life. Would be nice if that was the allotment though…

The parent- child relationship is unique to say the least. We all have our opinions on how to approach matters with children or simply try to not talk about many, many things. Many times we approach it with an ignorance is bliss attitude. We don’t want to worry those who love us. The problem becomes we also do t receive the loving support they can provide.

To me the best I’ve ever seen addressing health issues was BH’s mother. She sat us all down around the kitchen table and laid her health issues down. She had survived a double radical mastectomy many years earlier. She developed some health issues that were related to the treatment at the time. Eventually her heart started giving some serious issues and she couldn’t have any type of surgical intervention. We all knew something serious was going on but she wouldn’t confide in any of the children or their significant others. All she would tell us was “everything’s fine”. The stress of not knowing was incredibly bad for everyone who loved her, and for her. Apparently her PCP told her to tell the family. Once she had that long conversation, we were better prepared for everything that was to come. It stopped all the speculation, eased our fears and we were able to rally together to assist, comfort and support her.