Aorta Acending Aneurysm

[Safeangel]

Sorry for the long email but feel I need to vent...February went to GP with back and stomach pains .

March sent for CT where they picked up an ascending Aneurysm and sent results back to GP for referral to be made to vascular.

When I called GP for scan results receptionist told me all clear.

Found out by accident whilst looking on my GP access app I had aneurysm.

March called GP and said I wasn't happy I had not been informed. GP informed me referral had been sent.

April went for my yearly heart scan of bicuspid valve and they confirmed I had an aneurysm as well of 4.8cm.

They asked if I had referral to vascular and told them GP has made it and waiting for letter.

April booked appointment with GP as still no letter of appointment. Again informed me one had been made.

May still no letter and called GP they assured me it had been sent and it's for 17th May. I informed them that was my cardiologist appointment not Vascular.

Later in May still no referral and again called GP. This time they looked at my notes and agreed they hadn't sent it.

They said they would send it that day.

17th may saw cardiologist about bicusip and he said I'm likely 1 year away from having to have that fixed.

I explained I now have an aneurysm and he said he would discuss my case with vascular once I've seen them about having both done at same time.

18th May GP receptionist calls saying they won't refer me as I've moved house and I'm out of their area. (Although I told them I have 28 days to find a GP and I am waiting for them to do referral)

They finally do urgent referral.

22nd May see vascular and hopefully some answers. To then be informed they can't do anything as it's complex and I need referral to specialist hospital in Liverpool.

So here I am still scared, nearly 12 weeks in and still not been seen.

Oh and last year they knew I had an aneurysm at 4.4cm and failed to tell me.

My dad had a brain aneurysm at 54 (survived) my grandad 54 didn't survive.

I'm 54 and although mine isn't brain aneurysm I'm still scared. Feel my life is on hold.

Sorry for such a long post but I feel lost and letdown.

[Beta70]

So sorry for you, it really feels like they are wasting precious time and I can understand how anxious you must feel , especially with having been given the wrong information in the first place. Assuming they have not referred you to Liverpool already, I would insist on an urgent appointment with your GP to ensure this happens asap. If they won't do this I would ask to go through the channels of making an official complaint, citing the information that you had initially been given the wrong all clear result, plus then the promised referral did not happen. I appreciate this is not easy to do and suggest keeping calm and being polite, and using the broken record technique (continually repeating your concerns). Best wishes.

[Safeangel in reply to Beta70]

Thankyou I've just heard from the vascular consultant who can't do my referral and they are sending letter out to GP to refer me to Liverpool.

[Alisbabas]

Hi Safeangel,

Who wouldn't be worried in your position, i really hope you get urgent answers / treatment. Keep your chin up and please keep us posted

Take care

Ali x

[JulianM]

Hi Safeangel - having been diagnosed unexpectedly with an enlarged ascending aorta myself, five years ago, then having had an eight week wait to see a cardiologist, I think I have some idea of what you're going through. I do count myself lucky to have had two successive experienced GPs unhesitatingly on my side, so I totally get the frustration ... however, the positive is that the Liverpool team are up there as some of the most experienced aortic specialists in the UK and you are heading to the right place.

Once you get there, and hopefully they have full access to your scans (which, in my experience, can be a battle in itself), it's possible they may offer you earlier surgery based on 3mm+ growth in two successive years as well as your family history. What's best for you will also depend on the state of your aortic valve. Definitely a discussion to have with specialists.

Very best of luck, and hope you'll get better service in the coming months.

[Safeangel in reply to JulianM]

Thankyou for taking the time to reply and I really hope that will be the case. I seem to have spent 3 months fighting with GP to get me referred and even asked at first if I could be referred to Liverpool and they said no I have to go to my local hospital first who don't even do the surgery.

Hard to keep blood pressure down when I'm having to do all the chasing around.

I'm exhausted x

[Cat04]

Hopefully Liverpool hospital will pick this up and expedite due to the delay you have already experienced. Ascending aorta dilitation or aneurysm and bicuspid aortic valves often go hand in hand and I'm sure Liverpool will recognise any urgency.

I've recently had my BAV replaced but my dilated ascending aorta at 4cm was only borderline so did not get repaired or replaced. I believe the threshold for operating on a dilated aorta with BAV is 5cm. My surgeon wanted to see it intraoperatively before making his decision.

[Cat04]

Just read your previous posts and I'm a bit confused as to whether you have an AAA (Abdominal Aortic Aneurysm) or an Ascending Aortic Aneurysm.

[Safeangel in reply to Cat04]

Hi one of the many issues surrounding my GP who told me I had abdominal and found out later I didn't !!

[wischo]

Can only say that is shocking neglect on your GP side of things and you should follow it up with an official complaint. Hard to believe this can happen in a supposed wealthy country and can only be explained by total incompetence. I also feel if your local hospital can not carry this procedure out then they have a duty to refer you to one that can. Wishing you all the best with this.

[Safeangel in reply to wischo]

Thankyou and I hope I receive a referral sooner rather than later x

[Digger0]

If they are sending you to the Liverpool Heart and Chest hospital, it is lovely. Plenty of parking, easy to get to, very friendly staff and no A&E so no broken legs etc holding things up. lhch.nhs.uk They also have a Thoracic Aortic Aneurysm Service lhch.nhs.uk/our-services/th...

[Safeangel in reply to Digger0]

I really hope they do send me there and I've heard very good reports. X

[Digger0 in reply to Safeangel]

I had my complicated atrial septal defect repaired there in August - excellent service!

[Safeangel in reply to Digger0]

That is reassuring to hear x