Interatrial Septal Aneurysm (ASA) - anyone with knowledge or experience of this condition or relevant recent research?

[ozziebob]

I am 75, with 2 years of paroxysmal AF, and looking again at my first Echocardiogram I had in May 2022, I notice there was a finding of an "interatrial septal aneurysm". This finding was mentioned almost in passing, without further emphasis or mention in the Report's Conclusions.

However, while such a condition seems to be associated with arrythmias and increased stroke risk, it has never been discussed with me by a Cardiologist (seen by an Arrhythmia Nurse) re stroke risk, nor my GP, nor anyone in Haematology concerning my choice about anticoagulation or not.

I am currently not anticoagulated, by choice, because of previous unexplained chronic bilateral subdural haematomas.

I am concerned as to whether this medical condition is one that would require further investigations or at least ongoing monitoring?

So is there anyone out there who has personal experience or knowledge of this condition, and is able to share what understanding they have gleaned regarding its potential to cause future harm?

[sassy59]

I’ve just read up about your problem and understand it to be quite rare, needing anti coagulants and monitoring. I’d be speaking to a cardiologist if you have one, today. If not, get your GP to refer you. Clearly nobody is panicked by this diagnosis but it needs clarifying I feel.

Good luck

[ozziebob in reply to sassy59]

Thanks for replying. The issue initially is definitely re Anticoagulation because I have only recently decided not to take anticoagulation because of my previous chronic bilateral subdural haematomas, but this latest finding (of mine!), together with my AF, seems to raise the stroke risk higher than I had previously assumed. But no medical "expert" who has looked at my Echocardiogram, presuming it hasn't been missed, has deemed it worth mentioning to me or doing anything about.

I have no way of contacting either Cardiologist or Haematology directly (quickly signed off recently from both), and will need to get re-referred via my GP. And I'm not looking forward to a speedy resolution on that journey.

I am reduced to sending an eConsult to my GP asap.

[sassy59 in reply to ozziebob]

Please let us know how things go.

[secondtry in reply to ozziebob]

Worth a private consult.

[JOY2THEWORLD49 in reply to ozziebob]

Hi

I feel we with AF even controlled should be kept in the out-patients

list for an appointment once a year.

We all have questions or things happen that we want clarifying and followed

up. Dr say or initiate higher doses and we want verification that this right instead of a change or introduction of a different drug.

I was in a situation whereby Metroprolol left me with a 186 H/R average during the day on monitor

I demanded referral to Cardiac Specialist. She changed me.

Still left uncontrolled. Now at 156 H/R average day and LEFT.

I was advised by a Locum to attend a well known Private Specialist.

Result Diltiazem great now controlled.

The moral of this story is 'no quality of life' was not listened to.

That's why at least oce a year we AFers should have a regular review of our life, with ?s answered and meds reviewed.

It is then we will be advised research uptodate about our meds.

cheri JOY. 73. (NZ)

[10gingercats]

Do not be fobbed off by this. At 70 I was found to have a hole in my heart and then had a TIA. I was not anticoagulated . Cardio. thought the TIA was possibly caused by an embolism in the same area. and quite quickly arranged closing the hole...a simple procedure done under sedation. I am now taking Apixaban. ...right after the closure i took Warfarin.I would be chasing this and not sitting back waiting for things to happen .

[ozziebob in reply to 10gingercats]

Thanks for your interest.So was your condition what is known as an "atrial septum defect"? The research I saw said both strokes and TIAs were more likely with both the defect and the aneurysm. Bummer, as as because of my previous brain bleeds, I wanted to choose to be uncoagulated. The balance of risks would seem to have suddenly changed, but none of the "experts" mentioned this ASA to me re risk, or anything at all. Nothing since my May Echo, which is a long time ago now.

I'm hoping that the lack of attention paid to this Echo finding is because it's below a certain size.

But what do I know? I've now sent an eConsult to my GP Surgery and asked to be re-referred to an actual Cardiologist.

How long is a piece of string!

[10gingercats in reply to ozziebob]

Glad to hear you are seeking action on this.At the very least you need to know the details of this as understood and analysed by the experts and explained to you. They can quite easily want to ignore it and not close it but closing it would probably be an easy option. I write as a non medic .I think if they decided not to close it i would want a second opinion bearing in mind your underlying history.

[10gingercats in reply to ozziebob]

Yes. Mine was an atrial septum defect.I was warned that a stroke was likely if they did not close it.Mine was not large but the embolism aspect of it rather put the wind up the surgeon.

[ozziebob in reply to 10gingercats]

Now I am confused. You seem to think I have a septum defect, which is a hole that allows blood to pass between the atria. But I don't have that, I have a septum aneurysm, possibly congenital is my understanding, and hopefully small enough not to cause concern.You seem to be saying it might suddenly develop into a defect, a hole! That's not my amateur understanding at the moment. I hope I'm not wrong.

[10gingercats in reply to ozziebob]

No intention of confusing you. You asked in your reply to me if I had had an atrial septal defect and I replied that that is what I had had and how it had been dealt with. As there are so many patients now needing treatment and not getting it it occured to me, perhaps incorrectly, that you may end up falling into that category as it sounded from what you had written that things were progressing rather slowly for you . I had no intention of interfering and only offered advice/guidance based upon my own experience.

[ozziebob in reply to 10gingercats]

No problems, thanks for your concern.

[Tapanac]

I have had a subdural haemorrhage but I have still been advised to take my apixaban it does have a reversal drug by cannula which the hospital gave me and I didn’t take The apixaban for two weeks

Good luck and please maybe get a private consult if you can manage it. It costs about £250

[ozziebob in reply to Tapanac]

Thanks for your feedback.My haematomas were chronic, bilateral and unexplained. When I looked at the scan I had 6 weeks after my original scan, and after 10 days of steroids, the blood pooled across my brain was truly a shock to me. It "shows near complete resolution of the left-sided chronic subdural haematoma and moderate reduction in the size of the right-sided collection which is now approximately 20 mm in maximum depth compared to 24 mm" (6 weeks ago). That's exactly 1" deep. Like you, I don't want that again, but unlike you I have so far not taken up the Apixaban recommended.

My issue re that is that I haven't spoken to any of the medical "decision makers" about my risk situation, and now the ASA seems to add further risk factors, or not. I have just been told about decisions taken by experts off stage. I don't feel I am able to give "informed consent" either way. Perhaps the ASA been there since birth, but a discussion would be helpful.

Did you ever understand why you had the subdural haematoma?

Is your Apixaban tolerated OK?

[Tapanac in reply to ozziebob]

yes my apixaban is fine. I was on rivaroxaban before but I kept getting UTIs so hospital changed to apixaban that was in about 2018

Goodness you do sound as if you’ve been through the mill so I can understand your reluctance to be on an anticoagulant.

My haemorrhage was caused through a really bad fall where I crashed my head on paving. I was rushed to hospital as blood everywhere (mostly my nose and face I thought) and they immediately gave me the reversal drug for apixaban. Then I had to wait for it to heal. I was going to be sent to St. George’s tooting for them to go in and seal it, but I had had brain tumour surgery a couple of years before so they thought better to wait until it healed itself. I presume it has as haven’t had another CT scan

So different to yours which does sound scary so even more in my opinion you should see an EP or cardiologist as soon as possible

Good luck to you and I do wish you well

Pat x

[ozziebob in reply to Tapanac]

Thanks for your helpful further explanation.Of course I fear a congenital weakness in my brain bloods vessels as the cause, in which case that would still be a vulnerability for me now. And living alone, I fear not being able to call for assistance in time if a new more persistent chronic intracranial bleed occurs and I'm taking anticoagulants.

If not a congenital weakness, one suggestion was "straining on the toilet" as a possible cause. So if I can avoid the toilet for the remainder of my life, that should do it !!!!!

Thanks Pat.

bob

[Sniggetts]

Hi there ,

I have recently been diagnosed with AF and about to swap from bispralol to diltiazem. My echo said I had an atrial septum aneurysmal appearence as well as a few other bits & bobs . Cardiologist thinks it could be because I was having arrhythmias during the echo which distorted the echo , so he has referred me for a CT scan of my heart for a more detailed picture and then to start Flecanide to control the rhythm.

I feel that you need to discuss your echo with a cardiologist , if possible ,to get some clarity on what this means for you . Initially I wasn’t due to be seen for another 8 weeks but my sanity couldn’t take it . So I dug deep into my savings and paid £200 to have a long chat with a recommended specialist, best ever Christmas pressie to myself.

I’m not on any anticoagulant as deemed low risk for now as normal fit / healthy / female & 55.

I really hope this helps a bit, very best wishes to you.

[ozziebob in reply to Sniggetts]

Katomummy,Yes, your experience is very helpful. It seems that research in this area is a bit dated, and estimates of its frequency in the general population still in doubt, as is the stroke risk estimates.

I understand that, at 55, you needed a more urgent response than an uncertain length waiting list, and your £200 was certainly well spent, as you concluded. I agree with your decision to go private, but I'm still hoping the NHS will eventually help in my case. Presumably the CT Scan will be free in the NHS, not an extra expense for you?

I agree about needing/wanting to see a Cardiologist to discuss this finding (of mine) and it's significance going forward and for my current no anticoagulation decision. As a consequence I sent an eConsult to my local Surgery yesterday. This morning I received a text saying my doctor would examine my case in 12 days time. Doh !!!!! No reason was given for the delay, holidays I imagine. But at 75 I'm pretty relaxed about this initial response, knowing my previous tardy dealings with my GP and Surgery, and given that their prompt text this morning was a pleasant novelty in itself. It's whether a re-referral to a Cardiologist is made or not that concerns me most. A battle still to be had.

For now, I have to hope that the medical staff who have examined my echocardiogram have seen this finding and have chosen not to highlight it, as did the cardiac sonographer who performed the Echo. Any other possibility is too appalling to consider. And I have survived until now (75) with this ASA (possibly congenital) without incident, so maybe I do have time to join an NHS waiting queue or 2 for the further explanations I need.

Thanks again, mummy of Kato.

[ozziebob in reply to Sniggetts]

Just an addenda. I Posted the same Post on the BHF Forum and received an interesting Reply you might also appreciate reading ... healthunlocked.com/bhf/post...

bob

[Sniggetts in reply to ozziebob]

Thanks so much for that Bob, fascinating . I had absolutely no idea that sort of thing existed, it’ll be interesting to see what my CT heart scan finds . Which I couldn’t afford privately, so consultant request on NHS but said only 4~6 week wait , so hoping it’s this side of Christmas.

[ozziebob in reply to Sniggetts]

Just rereading this recent Post of mine, I was wondering if your private cardiologist said anything specific about ASAs in general that might be of value to me. Tomorrow I finally have a telephone consult with my GP about my Interatrial Septal Aneurysm, and the more info I have the better questions I can ask.

I realise you are still waiting for a CT scan to understand more about your condition. Let me know when you get the results from that.

bob

[Sniggetts in reply to ozziebob]

Hi Bob,

The private cardiologist said he couldn’t comment at present as it needed looking at further to identify what the ‘bulge ‘ actually is , but said I was safe and it’s not life threatening….. 😬

As soon as I have the cardiac CT scan I’ll update you .

All the very best for tomorrow’s call, hope you get some good info .

[ozziebob in reply to Sniggetts]

I was just intending now to remind you about the importance of Vitamin D, but I checked and it seems I have already mentioned my experience in your only Post. If you read my Bio you will see my health story, and my ongoing "feeling" that raising my serum vitamin D level from "deficiency" to 107 nmol/L is making a vital contribution to reducing my AF going forward.

I do not want to drop below 100 nmol/L.

Do you know your current level? I am interested to know what you think is a "high enough" level.

If not, I suggest you ask for the appropriate blood test.

Good luck with the CT, and the AF.

bob