Aortic Root Aneurysm treatment/ advice

Posted by trki @trki, 6 days ago

I’m posting on my husband’s behalf. He is currently being treated for aggressive prostate cancer.

( had radiation and now on ADT medication) Age 74

He has been monitored by a local cardiologist since 2019, and more recently, this month , is being evaluated by a Cardio Oncology Specialist at Mayo, Arizona. ( where he is also being treated for his prostate cancer)

Echo 12/23/2019, Aortic root 3.9 cm

Echo, 02/03/2023 Aortic Root 4.0 cm

Echo, 08/21/2024, Aortic Root 4.6 cm

CT Chest, 08/27/2024, Aortic Root 4.5-4.6

Echo, 12/02/2024, Aortic Root 4.7 cm

Echo, 01/10/2025, Aortic Root 5.1 cm, also moderate to severe aortic valve regurgitation

CT Angiogram, 01/17/2025 Aortic Root 4.9 cm

He was put on Losartan 25 mg in August 2024, 1x daily, which was increased to 25 mg twice a day on 01/10/2025

His BP is still unstable, Systolic in the mid 130’s most of the time.

The new specialist has referred him for a genetic and vascular consults. Have not heard from scheduling yet. ( will call scheduling next week)
What else should we be doing , asking for?
The aneurysm has been expanding fairly quickly. We are very anxious

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

moonboy | @moonboy | 6 days ago

I survived a complete aortic dissection in 2015. I was 50 years old. My best advice to you is to make sure that your husband does everything he can to reduce his blood pressure and to relax. Listen to your medical team. You’ve already got what sounds to be like experts working your case and they will tell you what needs to happen next. It’s super important that you listen and you follow their advice. A spontaneous dissection is often not survivable without immediate intervention in the form of open heart surgery. You’re in the right place and you’re doing all the right things. Just keep all your appointments and talk with your doctors. Advocate for your husband and make sure that all of his affairs are in order in terms of healthcare directives, living Will, powers of attorney, and his last one, the Testament if he hasn’t done one. It will bring him a lot of peace and bring you a lot of peace as well so that you’re not guessing at what happens next in the event he goes in the surgery. You’re gonna be OK. Just listen to your doctors. Peace.

trki | @trki | 5 days ago

In reply to @moonboy "I survived a complete aortic dissection in 2015. I was 50 years old. My best advice..." + (show)

Thanks so much for your thoughtful response.

We have most of our estate paperwork in place and will get the rest completed this week.

I agree that getting his BP stable is a significant concern!

Miriam Yaniv | @hannaaltmann1 | 5 days ago

Sorry to hear about all your serious medical complexity issues!unortunately I have CCD quite an extensive history myself!
I am 71 with vascular changes in my brain MRI (Assault with TBI 2021)
Last week had a cervical neck ct scan that was concluded as Mandibular vascular changes in the right!!
I suffer from uncontrolled HYPERTENSION and came to the conclusion us genetic variant that affect our family (ATP2B2) causing Deafness and Dysautonomia!=GBS
Fisher Miller syndrome!!
Please check this avenue too as NO medications can control the carcinogenic involvement of this Dysautonomia symptoms!

trki | @trki | 5 days ago

Thanks for your feedback.. It sounds like you have a complex medical situation as well…
My husband has a Genetic Consult 01/30 with a Mayo provider..

We continue to be concerned about his Blood Pressure being unstable … this was not the case for most of his life.. he will start a beta blocker tonight…

trki | @trki | 1 day ago

As an update to my post of four days ago, my husband had a long consultation with a cardiologist part of the Aorta clinic at Mayo.

He believes my husband’s 4.9 cm aortic root aneurysm is due to a genetic disorder, possibly Marfan’s .

He has a genetic consult next week with Mayo.

If no genetic disorder is identified, he will be monitored with an Echo in 3 months( at my request), and a Ct Angiogram in 6 months.
I still think he should be a candidate for Surgery now , just due to the fairly quick growth of the aneurysm and the moderate to severe aortic valve regurgitation..

Good news is his BP is more stable for the past few days … Hope it maintains!

pamela78 | @pamela78 | 16 hours ago

In reply to @trki "As an update to my post of four days ago, my husband had a long consultation..." + (show)

You must be very anxious. I suppose we should feel relieved when a doctor tells us to retest in 3 mos. or 6 or whatever, but I find the waiting so difficult. 4.9 is awfully close to 5. I'm sure your doctor knows more than I do, but I know how I'd feel in your situation. Bon chance.

trki | @trki | 15 hours ago

In reply to @pamela78 "You must be very anxious. I suppose we should feel relieved when a doctor tells us..." + (show)

Yes, I am still very anxious.

I am concerned that Dr may be looking to 5.5 cm for surgery.
It’s sad that we are hoping he will be diagnosed with Marfan syndrome, so his surgery can be expedited!
We are canceling a two month vacation we had planned in July and August. We don’t want to be too far from major hospitals for the rest of the year.

pamela78 | @pamela78 | 14 hours ago

In reply to @trki "Yes, I am still very anxious. I am concerned that Dr may be looking to 5.5..." + (show)

I don't blame you. What reason are you given for the delay, beyond Marfan? Is it an issue with the insurance? My understanding is that 5.0 is the line in the sand. If your doctor is saying 5.5, I'd ask him why. I wouldn't go on a vacation either. I don't plan to get on an airplane again. I hate flying anyway and this makes a good excuse. Let us know how things progress for your husband.

trki | @trki | 13 hours ago

In reply to @pamela78 "I don't blame you. What reason are you given for the delay, beyond Marfan? Is it..." + (show)

I will .. hopefully we will know more after the genetic testing comes back

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