Abdominal aortic aneurysm (AAA), anyone?

[EOLHPC]

Hello all

Am seeing my GP this week about symptoms that set in some time ago & increased over the past few weeks...these seem to indicate I need screening for AAA. Am wondering: has anyone here got experience of this type of aneurysm &/or been screened for it?

Apparently men over 65 do get NHS AAA screening, but women tend not to unless (like me) there is reasonable cause. I think my profile constitutes reasonable cause:

-immediate family history of AAA: my father was Marfan with severe early onset cardiac disease & died of a ruptured AAA

-my ehlers danlos type hypermobility gives me frequent paroxysmal haematomas in my hands, feet, mouth etc

-I have chronic complex multisystem immune dysfunction including peripheral vascular conditions and long standing bronchiectasis type issues

-my diagnoses include early onset immunodeficiency as well as infant onset lupus

Any advice & experiences please?

XO🍀🌻 coco

[cuttysark]

Probably barking up the completely wrong tree BC , but about ten years ago I had an emergency scan in A&E for just that.

I had a gnawing pain in the mid abdomen and a very obvious pulsating that could be seen just by looking, so had alarmed the doctor.

It turned out I had pancreatitis and there was lower abdominal swelling which in turn had made the pulsating of the aorta more obvious. My heart rate was also up with the inflammation.

It was then established it was pancreatitis but I was in for ten days with it and they repeated the AAscan again twice just to be sure.

I still can see it at times when the pancreas is grumbling.

My husband had it done last year as he was having symptoms and is over 60, but all was well thankfully.

With your family history and your own multi system illnesses it would seem vital that they check it out and keep an eye on it.

Good luck with it all and hope you won't have to wait long.

C xx

[EOLHPC in reply to cuttysark]

Thanks C! VERY helpful & encouraging. My thought is that although these symptoms I'm experiencing "mostly" seem relatively mild, my history etc virtually make these symptoms irrelevant: on the basis of history & diagnoses alone, I deserve AAA screening. We'll see what my GP says. She is usually very sensible & cooperative. My contingency plan is to get the screening done privately if the NHS refuses.

Please would you let me know what type of AAA scan you & your husband had: ultrasound, CT, MRI etc?

XO coco

[cuttysark in reply to EOLHPC]

My husband had only ultrasound but I had both ultrasound and MRI, I think maybe to look into the pancreas issue also with me.

Would be a good idea with your history to look up what would be best, don't leave it for them just to decide!!!

Mind you it is great you have a good GP . We are in La La land here with ours!!

If I hadn't pushed for private over last two years I would never have advanced to the point I have reached now. Our old retired GP was a diamond, now just dross, so have to look out for ourselves!!!

C xx

[EOLHPC in reply to cuttysark]

Great advice! JACKPOT! Am V grateful! 👏👏👏😘

[EOLHPC in reply to cuttysark]

Hello again: saw my good GP yesterday and just want to say thanks again: she volunteered to refer me for the scan for both AAA & ovaries. I barely had to even present my case...I just reminded her of my ehlersdanlos & IBS + my father's rupture and she immediately wanted to examine me. so, I guess the AAA thing is relevant. She is the GP I see most consistently (say 90% of the time for nearly 10 years). She knows me & my stuff so well....am feeling very lucky. Hope things are going well for you too, all things considered XO

[cuttysark in reply to EOLHPC]

So delighted everything worked out for you re the referral.

With your family history it will be a huge relief to have it all checked out.

All the best, hope you won't have to wait long.

C xx

[misty14]

Hi Barnclown

Sorry to read of your concerns surrounding AAA!. As if you haven't enough to worry about!. Whilst I can't give any experience of this thankfully, I just want to wish you luck for seeing your GP . When do you go?. I think with your medical history there won't be a problem in you getting the screening and or she will put your mind at rest as she's a good GP. Your being very responsible asking about this and it's right to have screening with doctors knowledge as they are better placed to put the results in context rather than these private firms!.

Good luck and let us know how you get on. X

[EOLHPC in reply to misty14]

Many thanks misty: I vvvv much like the way you've thought this through: you've helped me a lot. I see my GP on Thursday...as usual, we have a lot to cover in 10 min, so I may not get to the AAA issue this week, but I certainly will at the next appt.

as I've said before here, the past 4 years have been about prioritising which issues to tackle when...am now down to 2 basic issues: dermatology (my GP referred me recently and I already have a clinic date in Jan) and this AAA thing. If my GP isn't informed enough to recognise my case deserves NHS AAA scanning (even if only to establish baselines) then I'll ask my lupus rheumatology clinic to refer me.

And, you're right: I'll avoid those private firms! If I do go private, it'll be at our local BMI via GP referral to see a vascular consultant there who also practices at our local NHS hospital.

👏👍👌XO coco

[cuttysark in reply to EOLHPC]

Couldn't agree more re private tests and those companies who advertise.

Although I have seen consultants privately all my tests were done under NHS at their referral. They felt I had waited too long and symptoms were being missed by GP and were becoming increasingly alarming.

I think there should be no problem at all in getting an abdominal ultrasound arranged by your GP .

Good idea to bring it up with them soon. X

[Kaspinallsgr8]

Hi. My only experience unfortunately is not so good. My late husband's mother died from an AAA. For several months she had complained of abdominal pain but the GP told her it was likely a rumbling appendix and they would keep an eye on it. She died in her sleep so she wasn't aware of what happened. Thank god. This was in 1980 so hoping GPs are a little more savvy now and will get you the scan/ test ASAP. It is not an expensive test and there isn't any reason to deny you with you family history and your health conditions. Any they have hesitation though just keep pushing for it. Better to know and not worry.

[EOLHPC in reply to Kaspinallsgr8]

Thanks kaspin. That is so sad. Those months feeling such pain, and being misdiagnosed...so hard. I sense there is a kind of a mercy in that she died at home. Am remembering my father whose AAA symptoms were also misdiagnosed, but he'd had a fall and both he & the dr thought his sore back was due to that. Finally he was rushed into hospital. To this day I'm not sure exactly what happened back then in '95, but it took perhaps 2 weeks as an inpatient...involved surgery and great suffering. Meanwhile I was on this side of the Atlantic, very poorly with my lupus unrecognised, in a lot of severe pain and being tested for MS. I couldn't travel to say goodbye. I know you're right: better to know, don't rely on physical examination...but part of me is thinking: why bother to get the imaging when any possible intervention/treatment is so problematic in its own right. This is all very sobering. Well, at least I've stopped ignoring this issue and am finally discussing it with my family & my drs. Thanks again. Wishing you all the best

[sunshine16]

All the best coco wishing you the very best 🌻🌻

[EOLHPC in reply to sunshine16]

👋🌞😘