Anyone else experiencing a delay in screening for a Dilated Aortic root?

[Tonypredarmy]

Hi,

Following a 6 week period of Atrial Fibrillation in February 2023, I had an MRI and an Echocardiogram.

From the scans it was noted that my aortic root was dilated and measured 4.8cm. The consultant advised that I would require an annual scan to monitor the rate of dilation. I was put on the NHS screening list but after 15 months I had heard nothing, so after enquiring with my local hospital I was advised that there was currently a backlog and my repeat scan would be in another 4 months, making it 19 months since first diagnosis.

I decided that I did not want to wait so paid privately for a scan which showed that my Aortic root – sinus level was now 5cm, showing a growth rate of 0.2cm per annum.

If the growth in the aneurism continues at the current rate then I will potentially hit the 5.5cm dilated level in 2 to 3 years, which I was advised would be the point when intervention would be required.

My local hospital has now received the same result from my private scan and as such have advised that my NHS appointment will now be re-arranged, so effectively I'm back down the list, potentially having to wait 19 months for the next scan.

Given the rate of growth I'm not willing to wait so I'll have another scan privately in 12 months but can anybody tell me at what point will the NHS deem my condition serious enough to give me regular scans required and is the 5.5cm level as critical as it is reported?

For info, I'm 59 years old and 6'2" tall.

Thanks in advance.

[10gingercats]

The situation these days is you have keep requesting for all the scans and tests you need.....and don't let up .Ask where you are on the list and most importantly put yourself on the cancellation lists for everthing.When someone drops out you will be called to fill the gap.It works approx 50% of the time so well worth doing. Sometimes it will be a few hours notice and sometimes a day or two. I saved two months of time recently .I was seem at the end of April for an appoint. and had been on the official list for end of June.

[Tonypredarmy in reply to 10gingercats]

Thanks for taking the time to reply. I will keep on to them.

[Lexi72]

Hi Tony , with usual caveats i am not medically qualified and everyone’s condition can differ, there are NICE guidelines for monitoring aortic aneurysms (which you can search online) vary depending on how advanced the anuurysm is . I think 12 month interval monitoring by echo (as your cardiologist recommended) is quite common but the interval may be reduced if the aneurysm gets more advanced. At very early stages the interval can be longer eg every couple of years. MRI monitoring intervals can be longer in my experience. I wa initially monitored by the NHS community cardiology service in my area every 12 months and the interval was later reduced to 6 months in a specialist valve clinic but in addition to the aneurysm I have a bicuspid valve and regurgitation as well and the monitoring was more for the regurgitation. I had MRIs about every 2 /3 years after diagnosis . The 55ml size for considering operations is also in the NICE guidelines (but can be lower if you have a family history of aortic disssection a bicuspid valve or marfans)but whether it is appropriate to operate is a balance of risk judgment call for your cardiologist. They look at things like rate of progression and abnormalities in the aortic wall as well. It is really important that you have regular checks and an assessment of the results by a cardiologist. It is a shame the NHS I. Your area has not provided this . I have been really lucky with my NHS trust but you need to be persistent and make sure you are not forgotten about. Best wishes really hard but try not to worry too much ps I was told not to do high intensity exercises lift weights and watch the blood pressure. I am on blood pressure tablets

[Tonypredarmy in reply to Lexi72]

Thank you so much for taking the time to reply. I'll have a look at the NICE guidelines and keep pushing to ensure that I do get the regular scans. My blood pressure is quite normal (122 / 72) and I have a resting heart rate of 56 so at least I have that going in my favour. plus I am not on medication, other than Statin, which everybody over 55 seems to be on these days.

[StevepH2012]

Hi Tony,

the process that I followed when i discovered that I needed to have dilation growth monitored was that the (NHS) cardiologist referred me to a surgeon when diameter hit what he considered 'entry level for intervention' given that I also had a bicuspid valve. The (NHS) surgeon suggested that I could safely wait with twice yearly ultrasound checks. The dilation grew 0.2 cm between the 2nd & 3rd 6 monthly scans at which point the cardiologist referred me to surgeon a second time and I was then in the queue.

Presumably the NHS appointment you refer to is with cardiologist and not surgeon - as mentioned above, ringing the appointment team to ask if the re-arrangement is to bring date forward and if not why not etc. is 1st thing, also, if you have details of cardiologist that reviewed the first scans contact their admins to ask at what point they are going to refer you to surgeon, given the fact that the dilation is growing...

Although I think my pre-surgery scans/monitoring was actually quite good, post surgery annual scans have typically been that I ring up hospital 2 weeks or so before the anniversary to say I've not heard anything and I'm due annual scan; they say 'oh' - look up my record and say 'oh yes, you should be having one'; and a few days later i get the brown envelope with a date, so far within 3 or 4 weeks of the phone call. trouble is, every NHS trust is different.....

wishing you well

[Tonypredarmy in reply to StevepH2012]

Thanks for the reply. At least I’m not on my own. I suppose it’s getting to me because I’ve seen it grown from 4.4 to 5cm in a relatively short period of time and I’m being told that an annual scan is sufficient (albeit it’s 19 months) and every bit of info I read is telling me that above 5cm needs regular monitoring.