Hi everyone, Today I had an appointment at LHCH to discuss my next procedure with the cardiologist about my 50mm ascending aortic root aneurysm. I was given the option to either leave it and monitor it every six months or have surgery again. I chose the latter.
I am 11 months post OHS for a mechanical mitral valve replacement damaged through contracting Endocarditis and Sepsis early last year. The cardiologist said they would have repaired the aneurysm at the same time but unfortunately I was too much of a high risk because of the infection.
Is there anybody out there who as been through something similar and how are you getting on?
Thank you in advance.
❤️
Written by
Zipper73
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Bless You. You’ve been through such a lot already and to opt to have more major surgery in such a short space of time - you’re braver than me! I hope everything works out well and that you soon get an op date. Wishing you the swiftest of recoveries.
I’m in a very similar situation with my Aorta, however I’ve had no heart surgery as yet. Mine measures at 49mm, dilation on the arch and ascending.
I am scanned about every 18 months. My last scan includes additional information mentioning dilation to my pulmonary artery and my EF has changed to 47 from 57 since the last scan.
I have no symptoms that I’m aware of.
This latest scan has prompted investigation and I will be having angiogram hopefully in the next few weeks to try to establish the cause of the reduction in EF.
I also have some LV abnormalities.
My aorta has remained stable in size for the past 5 years and I try not to worry about it, I guess like yourself its good to be on the radar and being monitored.
I think we all have similar but individual symptoms and conditions, I don’t really have any words of wisdom for you, other than to remain positive in life.
Hi there, after reading your post, you are so brave, and your positive thinking is remarkable. I wish I could feel like you do, I have been diagnosed with Arotic root And ascending aneurysm since March 2023, the root has stayed the same of 40mm, but the Ascending has grown from 32mm March 2023, October 2023 38mm, October 2024 40mm, since being diagnosed Anxiety and panic attacks has been a real nightmare for me, leaving the house is a big problem too. Waking up with chest tightness and upper back pain 😢 every morning since the 12th January, I was wondering if you get any symptoms with your Arotic ascending aneurysm. Since I haven't been going out bad Cholesterol is 3.8 and total cholesterol is 5.5, I have a GNT spray to take if I need it when iam out and 75mg of asprin to take as we'll. I always worry about my health, it's has been really difficult to cope with life each day, I can't get over having random sharp in the chest area 😢
Hi jayjay 10000, thank you for your reply. That's the reason why I chose to have the surgery instead of monitoring it. I'd rather get it done repaired fixed and get on with my life. I'll only be worried about it and it'll be on my mind all the time if I don't get it sorted. My mental health will be all over the place.
I know positive thinking and tiring to keep fit and healthy is key within our recovery period. Getting out and about with family and friends was a massive help.
Have you connected your cardiac team or even your GP about the random sharp pains your getting in your chest?
Thank you for your reply. Just like you said I have no symptoms also. They only noticed the Aneurysm when I was admitted into hospital for endocarditis. (Which was probably a blessing in disguise).
My EF is at 55, I'm quite an active person i have a physical job as a greenkeeper, i go to gym twice a week and parkrun most Saturday mornings.
I hope you get some positive results from your angiogram test next week.
I think the key is to stay positive as much as you can.
Aneurysms are indeed asymptomatic but only until the point where dissection occurs. In my view, as a dissectee, you're right to opt for surgery, especially at your age with the advantages that confers over a more advanced age. Planned surgery is a whole lot better than an emergency dissection repair, as I had, and they have moved the intervention diameter down from 5.5 to 5.0 cm for treatment at a high-volume centre.
LHCH is one of the top tier aortic centres in the UK, you're in good hands there.
I assume your blood pressure is well controlled, and you're on a med to slow the growth?
Thanks Zipper. Yes, very frightening. The surgery was a complete success aortically (now 7 years) but 14 hrs of open heart surgery re-started my atrial fibrillation so that's what I'm still dealing with, not quite got that under control yet.
That BP is excellent. Beta blockers are one of the two meds used to slow growth. There's good evidence for them for slowing in Marfan patients, though no direct evidence in non-Marfan but thought to help. Also ACE inhibitors or ARBs.
Hi Zipper am currently waiting for open heart surgery to replace the aortic valve. I have bicuspid which often is associated with dilated aorta. Mine is only 45ml (below the level you would normally operate 50ml for biscuspid , 55 in many cases and 45ml for marfan but everyone condition is slightly different. If lower watchful waiting is as you were told the normal approach and I have been monitored now for 7 years but need the valve fixed due to regurgitation The surgeon is minded to fix the aorta as well to avoid a second operation though I am borderline for fixing the aorta at 45ml /46 mlWhat I am finding really hard is waiting for a date . I was told 3-6 months before I would reach the top of the list but am now at 5 months and the wait is stressing me out. I think that they have now scanned virtually every bit of my body so expect that they will give you lots more pre-op tests if they have not done these yet . I have now reached a sort of equilibrium when I really want it sorted but remain really scared, You have done amazingly well having had the first operation already Hope that you get a date soon and everything goes really well best wishes Lexi
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