Aortic Root Aneurysm

[rfgh20]

Mine is 4.6 cm. If and when it needs repair, where are some of the best hospitals and surgeons to have it?

[JulianM]

This is a British forum; you might get better and more relevant answers if you asked on a US-based support group.

Dilated aortic root is in the thoracic area, so there's a Facebook group called 'Thoracic Aortic Aneurysm Discussion Group Questions and Answers Blog Help' which is large and active and relevant to you.

Cleveland Clinic seems quite popular if you are either in that region or happy to travel, but all depends on factors like what your insurance will cover, etc. There are some other big aortic clinics; big is better in this field.

You are some way off the size where an operation would be offered, unless your genetics/family history suggest unusual risk.

[rfgh20 in reply to JulianM]

I'm sorry. I didn't see the very obvious "British Heart Foundation". Thank you!

[JulianM in reply to rfgh20]

I've learned a lot from taking part in US/international forums, but when it comes to navigating health services, it's a very different challenge in the USA and in the UK! No need to apologise ...

[jayjay10000]

Hi there, I have the same problem as you, I have an Aortic Root Dilation of 40mm since knowing from March 2023. My Ascending is holding at 34mm. I haven't even seen my local Cardiologist consultant yet, my appointment is not due to the end of March 2024. I have been struggling everyday with Anxiety and it's been a real problem for me because my blood pressure always spiking when iam out somewhere in the car and it takes me ages to get home, any DIY I need to do after about 10mins of work I start to feel unwell. The hospital I will be going to will be James cook university hospital which is in Middlesbrough. How do you feel about having Aortic root dilation. I struggle every day with this condition.

[heart_surgery in reply to jayjay10000]

I recognise and share your difficulties. I had the operation in 2021... the waiting and the anxiety was really difficult to deal with. One of the junior consultants I saw about 10 years before my operation told me I had an inevitable condition, he made a cutting gesture towards my chest and explained it would involve separating my sternum !! and it happened. Unless you are in our shoes it is very difficult to find anybody who understands. Add to that the difficulties talking to surgeons and the waiting and getting straight answers and the fear of a dissection. I was about 5.6 when I was put forward. I wanted a PEARS operation and was prepared for that but in theatre the surgeon made a decision to implant a graft because my Aorta was in angry and inflamed (I'd been telling tham that for a year before theatre). Afterwards I had convinced myself that this graft would fail after 5 years or so and the anxiety and panic attacks I suffered after the operation took a year to subside. I had my operation in Covid time so everything was isolated and bizarre.

I can't make this any easier for you but I can share your feelings, you are not alone, any question or problem you have can be shared in this forum and there will always be someone here to talk to. Try not to get angry with the system but be assertive and polite... the English way. Do your research, inform yourself... knowledge and understanding helps ease anxiety. Be patient and find ways to help yourself when the anxiety overwhelms you,,,, breathing finding ways to calm your mind. Accept the things you can't change and do something about the things you can change. Mostly when there is no pain you can put it to the back of your mind, when the time comes closer you just get on with it and go through it. It's uncomfortable but when you are through it you get on with the re-hab and then come back to full strength and enjoy life like the strong person you are. It gives you strength, mentally and physically, it also adds to your character and makes you a bigger person. We here are glad to know you. All the best Tim

[rfgh20]

You should try to relax and realize you're unlikely to need repair for years. Control blood pressure and don't leave anything heavy. like I was at the gym. I'm bummed about mine because I worked out most every day. Now I have to cut way back.