Newly diagnosed and/or living with ascending aortic aneurysm…anxiety

Hi
I have a new aortic ascending aneurysm 4.1. I had a brain aneurysm a year ago unruptured with a craniotomy done at Johns Hopkins and found out it was a 4.7. Not a 2 threat here in Orlando they thought I had.
May11,2022. A year later I am still experiencing neurological symptoms but happy it’s clipped. The Surgery was successful, however she said the aneurysm was very sick and flat and causing the neurological symptoms I was having prior to surgery. The Bell’s palsy is gone, the stroke like symptoms are gone. But she said she had to go near the optic nerve so when I woke up after the 10 hours surgery, I could not see out of the right eye. I saw orange. Then white then it got better a year later. Still have issues though with lights flashing and some cloudiness’s in the bottom of the eye. My vision is better. But I now have a lot of issues with that eye being tormented with migraine and blurring on and off with very bad striking sharp pain in that eye that comes and goes. I have on going daily vascular symptoms. From light shows in my eyes upon waking up to massive headaches that go all day long. Strange neurological symptoms that are hard to describe but feel like I have trouble thinking during these episodes. I get three different types of headaches. Vistibular, chronic cluster types, hemiplegic, as I can’t feel one side of my face to my lips being numb. Also I lose my hearing in one ear then loud ringing occurs with these then I know it’s going to be a long one. Disturbing and anxiety approaches as it’s scary.
I also recently had three fusions in my cervical spine, C,3,4,5 due to sever stenosis in my spine. Plus thoracic issues with T5T7 two fractures. March 2013. My hands are tingling a lot with lightening bolts going through the fingers. Hope this goes away.
The Migraines I get are daily and since my Fusions I am getting an added headache to where the pain comes from the neck up over the top of my head to my right eye. Extreme pain.
Stressful.
Nothing seems to stop these. I live with all this going on and have adapted to it but find it to
This new normal. Gabapentin seems to help a little. I can’t take more than 300mgs three times a day. I get terrible reactions to more.
Hope some of this goes away with time.
I would like to find out exactly what’s going on neurologically with my brain. I’ve been my own advocate and seem to diagnose myself. I have seen two neurologists here in Orlando but they seem to be perplexed. They say my issues are complex. But have no idea how to help and possibly there is no help.
I suffer with no answers. Too complex for them.
Possibly the Mayo Clinic can sort all my neurological issues out with me so I can live a more normal life. I certainly would appreciate the superior treatment and help as my issues are quite complex.

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Mine is 4.5 and steady. It is catscaned each year to check if it has gotten bigger, so far staying the same. If it gets much bigger near 5 they can go in and put what I call a girdle around it to keep it from bursting. Mine was found on an annual physical and most of them are found when other test are being performed. Mine has been this way for 5 years or more, just have it checked regularly and you will be fine. 💝🙏🏻

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Mine is 4.5 and steady. It is catscaned each year to check if it has gotten bigger, so far staying the same. If it gets much bigger near 5 they can go in and put what I call a girdle around it to keep it from bursting. Mine was found on an annual physical and most of them are found when other test are being performed. Mine has been this way for 5 years or more, just have it checked regularly and you will be fine. 💝🙏🏻

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I did get a echocardiogram through my PCP about a month after my aneurysm was discovered. They need to make sure, at the very least, that you don't have a bicuspid aortic valve on your heart.

Then I got a referral to Brigham and Women's Shapiro Center and they ran a bunch of bloodwork, did another echo (because PCP's imaging center didn't check aortic valve), & did a temporal ultrasound to check for giant center arteritis. There was also a genetic panel for aortic aneurysm, mostly checks for connective tissue disorders. But Invitae's genetic panels are hardly exhaustive. But BWH was very thorough and followed standard of care. There just weren't obvious answers in my case. 🤷‍♀️

ANA & complement proteins came back highly positive, but we still have no idea what that means. Ultrasound was negative for GCA. And I had one variant on Invitae's genetic panel. I've been scanned, usually MRI, every six months and the aneurysm had gone from 4.7 to 5 cm in two years. No one seems real alarmed about that except me. Or they just don't have any answers as to how to slow an aneurysm's growth when it's decided it wants to grow.

So I definitely understand your anxiety. Since ascending aortic aneurysm means open surgery, I haven't just said, "Let's deal with this puppy." But it means living with a lot of anxiety.

Currently, I'm trying to just not think about it too much and start living as I want to live. Easier said than done.

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I did get a echocardiogram through my PCP about a month after my aneurysm was discovered. They need to make sure, at the very least, that you don't have a bicuspid aortic valve on your heart.

Then I got a referral to Brigham and Women's Shapiro Center and they ran a bunch of bloodwork, did another echo (because PCP's imaging center didn't check aortic valve), & did a temporal ultrasound to check for giant center arteritis. There was also a genetic panel for aortic aneurysm, mostly checks for connective tissue disorders. But Invitae's genetic panels are hardly exhaustive. But BWH was very thorough and followed standard of care. There just weren't obvious answers in my case. 🤷‍♀️

ANA & complement proteins came back highly positive, but we still have no idea what that means. Ultrasound was negative for GCA. And I had one variant on Invitae's genetic panel. I've been scanned, usually MRI, every six months and the aneurysm had gone from 4.7 to 5 cm in two years. No one seems real alarmed about that except me. Or they just don't have any answers as to how to slow an aneurysm's growth when it's decided it wants to grow.

So I definitely understand your anxiety. Since ascending aortic aneurysm means open surgery, I haven't just said, "Let's deal with this puppy." But it means living with a lot of anxiety.

Currently, I'm trying to just not think about it too much and start living as I want to live. Easier said than done.

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My team is trying to keep it from slowing by lowering my blood pressure just to the almost passing out stage. So far it's worked, and I think my aneurysm is at about 4.8. I have a CT schedule for tomorrow morning.

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I am about to add a BP med, as I get up near 140/90 on occasion. Thinking losartan, as ACEs (like lisinopril) make me cough.

My CV surgeon tried me on a couple beta blockers to bring my BP down. They did. Way down; so I feel you. They both felt like taking a pill to cause depression to me. Hated it.

I've been on losartan before, with no noticeable ill effects. So hopefully, that'll give my BP a little help.

It's so hard to find the right balance between being reasonably cautious and doing the other things I have to do to stay engaged and happy with life.

You can't help but worry, though.

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