Dissected aortic aneurysm

[Bananacar]

After reading some of the posts I realise that I am not alone in not having much information about my condition. My dissection was not traumatic, in fact I didn't realise I had it until I had an echo cardiographer and then a ct scan,. Naturally I 'googled' the condition afterbeing told by my GP that he didn't know anything about aneurysms, I must admit it scared me silly especially the statistics on open heartsurgery. I am now 18 months after diagnosis and have been advised to have surgery, which I declined on the grounds of my age (76) and fear of becoming disabled post surgery. I have never had high blood pressure or smoked and I am at a loss to know what could have caused my condition. Are there any others who have refused surgery and are just trying to live with the condition ?

[Vanilla88]

I am a little confused by your condition, I thought a dissection was a life threading situation where you can bleed out in minutes. I have a dilated aorta which makes me at risk of dissection.

Currently not awaiting surgery as not yet eligible.

My understanding is surgery is th he only option if you have a dissection ?

[JulianM in reply to Vanilla88]

There's a big difference between dissection and rupture.

Dissection is bleeding between the layers of the arterial wall, forming a second channel for blood to flow through.

Rupture is the breakdown of the outer layer of the arterial wall.

Dissections can lead to rupture, which is why any dissection is a medical emergency, but an increasing number of people are being treated for, and surviving, dissections.

Some dissections are only detected on scans, though this is rarely reported, and some can be medically managed with careful blood pressure control, especially when they are limited to the lower parts of the aorta.

[Bananacar in reply to Vanilla88]

My dissection was already present when I was diagnosed 18 months ago, it is in the descending aorta, I also have an aneurysm in the ascending aorta -not dissected and also dodgy heart valves so you see I won the lottery when it comes to heart problems. The recommended surgery is for the ascending aneurysm but because of the other problems I would probably need further surgery I turned it down. According to the stats I would have a1 inb3 chance of dying on the table and if I survived a 1 in 3 chance of being disabled. I know this is only numbers but I have not been told anything different by my doctors.

[Blackcatsooty]

Dear Banana,

Welcome on board. Love the name.

I am 76 and had open heart surgery three years ago, to replace the aortic valve. Admittedly I had possibly the best regarded heart surgeon, and the op was observed by several cardiac staff, so they couldn’t wait to tell me all about the op. What came across was that the success rate for a replacement valve op was better than 99.5%.

The care in the cardiac ward was wonderful and the staff excellent. There was a long recovery at home, almost three months. But recovery was easy to cope with because I felt better every couple of days. And at the end I had my life back. Being old it was an easy choice to have a tissue valve. Which has behaved itself very well. I don’t know it’s there. Just the faintest scar if I use a magnifying glass under bright light.

I didn’t have a realistic option to the op, I was fading away rapidly and would be dead within a couple of months.

I was so exhausted that I was only active for two hours per day. Talk about last minute panic.

Doctors train for years. I listen to them, not the internet. Many well meaning people write on uncontrolled internet sites but there are also a few who write negative uninformed comments which cause fear and stress. So stick to NHS or BHF sites.

I was bicuspid. Simply an issue I was born with.

Best wishes

Sooty

[Bananacar in reply to Blackcatsooty]

Thank you for your encouraging comments, as you will read on my reply to 'cliff' I am a bit complicated. I only resorted to 'google' because of the lack of information from my medics, I only looked at stats not comments, I don't do Facebook because I quite agree that a lot of the comments are uninformed and downright dangerous but the Mayo clinic site is very helpful and the NHS and bhf are great but I needed to know what the chances were. Unlike you I am fairly well, I do get tired and struggle to walk far and at 76 think I have had a fair cracking of the whip. My main fear is of being disabled, my mother had 2 very serious operations at age 78 which enabled her to survive but her quality of life was poor she 'lived' until she was 93 but spent her days in a chair in front of the TV. I would rather go out with a bang than go through that. I like your name too, I had a cat named Sooty, my name comes from my grandkids name for my yellow car. My grandson aged 2 asked his older brother if he liked going in grandma's banana car. So that's what it has always been. It's been lovely to talk to you, take care,

Bananacar

[Blackcatsooty in reply to Bananacar]

Wise words. I can only tell you what I experienced, but the great thing about AVR was that I got complete recovery. No issue of any impairment after.

My walking started to rapidly deteriorate and a notable feature was an inclination to stumble forward. I had the usual annual tests and they showed my heart would not last much longer. The NHS responded fast, but covid was rampant and the heart hospitals were closing down. So I paid to go to The Cromwell in West London. Initially it was The Brompton but that closed.

If you are going to Oxford I imagine you will attend JRH which has a good reputation. So Brompton or JRH should be good locations. Can I suggest you monitor your decreasing walking. My valve slowly failed over about five years then suddenly worsened over about six months.

Admittedly my case was just the valve without any apparent side issues, but when they operated they did need a bit of patchwork.

I can’t describe the elation when, after careful rehab, I was fit. It gave me my life back.

Sooty is a very big black cat. Over 6kg. He adopted us when the next door neighbour died. I have never had any other pet, but Sooty is just lovely. He makes my day. He is very gentle and seems to like humans. Especially the regular Sainsbury delivery, the window cleaner and postman etc. as the weather gets colder, he sits on our laps which is so warm.

One little tip. Ask the surgeon or consultant what you can do to make his task less difficult. That goes down very well.

Sooty

[Cliff_G]

Bananacar,

Have you had a type A or a type B dissection, and what surgery were you advised to have? And the 18 months, is that after diagnosis of an aneurysm, or after the dissection?

80% of type Bs are treated medically, i.e. just medication (mainly beta blockers). With a type A, which is rightly pointed out above as usually life-threatening, there is a very small proportion who don't always need surgery

[Bananacar in reply to Cliff_G]

I have a type b dissected aneurysm and also a type a aneurysm, the surgery advised was for the ascending one apparently the type b one would be treated afterwards I.e 2 procedures. As my aortic and mitral valves are dodgy too it would be a big op. My cardiologist said it would need to be a 'supersurgeon' at a London hospital although it was Oxford who advised the surgery ( I am under Northampton General for cardiology -they were the hospital who diagnosed me, and Oxford for vascular ). The dissection was already present when I was diagnosed although I had not had any trauma previously. Since diagnosis 18 months ago I have had 2 ct scans 1 at each hospital, I had the last in July at Northampton and am still awaiting the results, another planned at Oxford for Jan 24.

[Cliff_G in reply to Bananacar]

Hi, thanks, and that's quite a challenge you've got there.

To answer your original question, yes, it's common to treat a type B medically only. If your ascending is 'only' an aneurysm, then the question becomes more one of should I get it done or risk an emergency type A? Having had an emergency type A dissection at age 63, I can say confidently that I wish I had been given the chance to have it repaired before, but I was 'too small' by the simple diameter criterion back then (5.5 cm - it's now 5.0 for surgery at a major aortic centre). Elective is always better than emergency.

I'd suggest the best way is to discuss with the surgeon who might be able to do the surgery (as you say, a top aortic surgeon is needed). See what he or she says as to the risks of elective surgery vs emergency, and what your risk of dissecting is in the interim. Surgery, especially planned, is a lot safer than it used to be 20 or even 10 years ago.

No easy answers, but I hope you find an answer you're happy enough with. Best wishes, Cliff

[Cliff_G]

Regarding your GP not knowing anything about the condition, it's good they they actually admitted that. You could give them the following link: aorticdissectioncharitablet...