What really happened?

[Bullsrlfc]

Apologies in advance for this ramble on something which is probably not a very comfortable topic on this forum but it's something I have been wondering about for some time and I just thought I'd ask you guys for any thoughts you may have.

In August 2022 I had an angiogram which didn't go well and resulted in a 'guide catheter induced coronary dissection' which had to be immediately repaired with 2 stents (plus a further stent to sort out the blockage they had gone in to look at in the first place). This procedure took some 3 hours (a far cry from the usual 30-40 minutes) and I had to have it repeated a few days later to 'optimise' the work they had done. Since then I generally feel somewhat worse than I did before the procedure although I have now managed to get back to quite a lot of exercise (20 miles walking a week) and recently even some running which I am delighted about (eg Park Run once a week c.31 minutes and improving).

My question is does this happen often? Was the dissection simply 'one of those things' that happens sometimes, as I was told, or could there more to it? I know I signed an agreement to the procedure as you always do but that doesn't absolve the medics of responsibility to do the job well. I was told at the time that mine was the longest angioplasty they had done in 3 years and that the doctor who performed it was 'not the usual doctor' so I've wondered ever since what really happened and why. Does anyone know whether there will be more detailed notes / information on file somewhere that would tell me more and how I might access it?

I also wonder about the future since I was prescribed ticagrelor, as seems normal, but having taken it for the usual 12 months, my cardiologist has told me I need to continue to take it, albeit at a lower dose, for a further 3 years. I don't feel all that happy about this and it seems to indicate something but I'm not quite sure what.

Sorry for the ramble. Any thoughts very welcome.

[Milkfairy Heart Star]

Hello,

I am sorry you have had such an experience. An induced coronary dissection is a possible risk of any interventional angiogram.

You can request a copy of your notes and the video recording of your procedure.

The best way to do this is by contacting the Patient Advisory Liaison Service PALS of the hospital concerned.

Usually you have a year to raise a concern, however this can be extended in certain situations.

Every procedure, such as an angiogram is audited. Each Cardiologist has the number of adverse events occurring during

any procedure they perform recorded.

You can ask for the outcome audit report of the Cardiologist who performed the angiogram.

Do you have a good relationship with your Cardiologist?

Have you been able to discuss your concerns with them or do you feel you would like a second opinion from another Cardiologist ?

You do have the right to ask for a second opinion. You could ask your GP to refer you to a different Cardiologist at a different hospital for a review of your procedure and subsequent care.

[Bullsrlfc in reply to Milkfairy]

Thank you so much for this information. I didn't know any of this so it's really helpful. I think I will try the PALS at my hospital in the first instance and see what they can offer. Do you know whether such an inquiry is confidential? I have a good relationship with my cardiologist (who didn't do the procedure) so I wouldn't want to damage that.

[Milkfairy Heart Star in reply to Bullsrlfc]

As far as I know everything is done securely and in confidence

When I requested my medical records, I had to prove my identity, then I was sent a secure email with the medical records attached. I had to use a special code to access the attachment.

[Bullsrlfc in reply to Milkfairy]

Thank you. That's really helpful.

[Sljp0000]

Sorry you went through all that. Are you thinking negligence took place? What I would say is PALs is only the first step towards complaint. The maximum you'll get is a sorry. If you want that apology they will need to look at your records and talk to the team who were involved in your procedure.

If you feel you want to take things further you have 3 years to do so either by complaining to the trust or through a solicitor.

Nothing is going to take away the fact you feel worse and feel like you've been damaged. Maybe you at least need a meeting with the Cardiologist who did the procedure and Pals team to go through exactly what happened and why before you think about taking things further.

Hope you feel better soon

Susie

[Bullsrlfc in reply to Sljp0000]

Thank you for your thoughts and advice which are very helpful. I really don’t know if there was negligence but the thought has crossed my mind especially as dissection is by all accounts rare.

[fishonabike]

In response to your question about whether coronary artery dissection during angiography is a common event: no, it is rare- you might find this article helpful:

ahajournals.org/doi/10.1161....

and this older one: ncbi.nlm.nih.gov/pmc/articl....

I would urge you to consider your motivation before you contact PALS. It is important to be clear about what you hope to find out and achieve. If you decide to pursue the issue through PALS, complete anonymity is unlikely to be guaranteed as the cardiology team will have had very few cases and are likely to recognise it.

I hope you resolve your concerns about how this happened to you, and that you eventually make a good recovery after all you have been through.

[Bullsrlfc in reply to fishonabike]

Thank you so much for your response. I’ve read the articles and they offer a lot of food for thought and are very enlightening about what happened to me, how I was treated and the risks involved. I actually found it quite scary to read about! I also appreciate your advice about next steps and will weight this up carefully before proceeding.

[Efka]

Great advice above! And bless you it sounds a horrific experience for you.

I can’t add anymore I just wanted to share our story as with age/wisdom I get more and more aware of so called “routine surgeries” etc.

My husband also did not have a smooth echo experience. They attempted and failed access in both wrists/arms. Once back at home he developed a pseudoaneurysm (blood pooling) at one wrist incision. It didn’t go away and he ended up with a one week hospital stay and an operation.

Not to put anyone off just a little “things happen” and any intervention (surgical or pharmaceutical) comes with risks - of course as well as the hoped benefits.

As an aside… I though most/all were put on some type of “blood thinning/anti clotting” after stents?! I hope you find more answers and keep improving.

[Bullsrlfc in reply to Efka]

Thanks for your reply. Much appreciated. I do hope your husband is doing much better now.

[beardy_chris]

If you decide to investigate further, I would recommend talking with AVMA (Action Against Medical Accidents) they can be a source of information and support. See avma.org.uk/. From my own experience, I wouldn't necessarily recommend going down the legal route but it is your decision.

[Bullsrlfc in reply to beardy_chris]

Thank you. This is very helpful.

[Qualipop]

Since you have a good relationship with your cardiologist, I would be tempted to talk to him first before you decide what to do, You really need a different cardiologist to take a look at the whole procedure. A solicitor would probably provide one but they would be expected to look for malpractice so could be biased. I know when I was in a car accident and made a claim, a specialist was provided to assess me and the future probable impact of my injuries. It took 2 years and I wish I'd waited longer before settling because I developed more problems. I have also lodged a complaint against a pain consultant who didn't follow correct procedure and made me very ill. There was no claim involved. I just wanted procedure to be tightened up. I did that at first through PALS who were utterly useless and I ended up having to redo it myself. That also took 2 years but I did get the result I wanted.

[Bullsrlfc in reply to Qualipop]

Thank you for the advice

[serenfach]

You dont have to go through PALS, you can phone the hospital and ask for your notes. They will give you the right number or address to request your notes. You dont have to give a reason, but if you want just say you find the whole thing fascinating. If you ask for your full notes (legally entitled and no cost) your cardiologist may not be asked as there will be other stuff in there.

Be prepared to see stuff that is not true though. There is little or no comeback for "mistakes" in your notes. Mine said my prostate results were OK, but I am female...

I had an op to remove a kidney which went completely wrong and I ended up on life support. I complained and it was found to be my fault as I "made my artery go into spasm under general anaesthetic"!

The only comfort is that your cardiologist will be a lot more careful in future. Hope you feel better soon.

[Bullsrlfc in reply to serenfach]

Thank you for your help. So glad your prostate is OK (that made me smile)!!