Update on my medical saga

[Jenzhearts]

Received my medical notes on Friday,well some of them, the ones from the 2 Angiograms I’ve queried and my “bedside meeting” ambush appear to be missing.

But on reading a letter that I didn’t receive a copy of about my failed Angiogram it says I have “severe subclavian tortuosity“ and that the wire kinked (yes I know I felt it) so of course I’ve googled but I don’t really understand so il phone the bhf tomorrow.

My provocation Angio says I have “significant apical disease of small vessels”

Now he also says some of the flow is restricted by the apical disease but then switches his attention to my LAD which we all knew is only mildly diseased.

So I’m confused as to why I had to have a CMR scan it just doesn’t make sense!!

Thanks for reading this is the latest in my ongoing battle to get the correct diagnosis.

[Weetabixie]

Hi. I had tortuosity and spasms in left arm and right subclavian occlusion in right arm. Both attempts at radial angioplasty had to stop the purpose was to carry out having a stent placed. Instead they then went through the right femoral arte. I am just finding out more about mine myself too as in what some of the phrases mean. I don't know what a CMR is I'm afraid. x

[Jenzhearts in reply to Weetabixie]

CMR is a cardiac MRI Scan.I was supposed to have Angioplasty as well.My right radial artery is very feeble and almost not palpable which doesn’t sound too good.I’m just waiting to hear back from the hospital re my Diagnosis xx

[Weetabixie in reply to Jenzhearts]

Did they attempt the femoral artery for angioplasty?

[Jenzhearts in reply to Weetabixie]

They were going to then decided to go through my left radial which now I know about my veins makes me wonder why they did xx

[Weetabixie in reply to Jenzhearts]

The interventional cardiologist who went through both my wrists then groin in the same sitting was ori told to go through the groin wanted to try wrists first. Since then blood pressure not read in right arm no more, pulse really hard to find and done on my neck occasionally found in left wrist weakly and have been pale. Stents were however placed but only one in first sitting as had been nearly 3 hours and an emergency came in so second one was a month later. Also used was the guided pressure wire. I'm now awaiting a myocardial perfusion scan.It's awful to be treated in such a way as you have, I just read your profile. I hope you do get answers 🤞

[Jenzhearts in reply to Weetabixie]

Thank you good luck for your scan xx

[Weetabixie in reply to Jenzhearts]

Thank you 🙏 x

[Milkfairy Heart Star]

"My provocation Angio says I have “significant apical disease of small vessels”

Do your notes actually say you were given adenosine and a guide wire used during the angiogram?

Have you been provided with your coronary flow reserve and index of microvascular resistence?

These are important, as these measurements are used to determine whether your small blood vessels are working properly.

Then acetylcholine is used to assess the reactivity of the coronary arteries?

If acetylcholine was not used then you didn’t have a functional angiogram which is the correct term to use rather than provocative angiogram.

Functional angiograms are only offered in a few places in the UK at present.

Here's the British Heart Foundation/National Institute for Health Research Partnership

consensus document on how to assess the function of coronary blood vessels with patients with angina and non obstructive coronary arteries.

heart.bmj.com/content/109/2/88

A cardiac MRI can be useful to look at the heart muscle itself as well as detecting possible microvascular dysfunction.

Tortuosity is when the artery has extra twists and bends.

I would definitely keep pushing for the notes of the bedside meeting and other missing notes.

When I had my angiogram with acetylcholine in 2014, I was given a copy of all the measurements taken of the blood flow through my small and large blood vessels when adenosine and acetylcholine were injected.

My CFR was borderline and I had spontaneous and acetylcholine induced coronary vasospasms.

[Jenzhearts in reply to Milkfairy]

Hi, it says a pressure wire was used, RFR of 0.75, then FFR of 0.81 with IV Adenosine.that was the left radial artery.

Then LAD RFR of 0.92 and FFR of 0.87 then he goes onto say some of the flow beyond the mid segment will be restricted by the significant apical disease where the vessel is of small calibre. Nevertheless this is negative and consistent with non flowing disease.

[Noodlesalad]

That's disappointing on the missing notes especially as they are the ones I'd be particularly wanting after being treated the way you were.It's a start what you have got and a step forward in your quest for answers. Well done for sticking with it 😊

[Jenzhearts in reply to Noodlesalad]

Thank you xx

[dierama]

Hi, Glad you will speak to BHF however caught sight of your post and was intrigued. 'Severe subclavian tortuosity', imagine a winding, twisting path instead of fairly straight path, hence wires and catheters kinking. Low flow (see my post) can lead to angina symptoms even though there is little and no blockage. 'Cardiac MRI scan is used specifically to provide an image of the heart structure and blood vessels; looking at the whole picture. Good Luck

[Jenzhearts]

I’ve now spoken to the bhf, Diffuse CAD can be a more severe form of CAD,but we don’t know as my letter doesn’t say.

The tortuosity- it’s Genetic and I was born with it, it makes me more prone to blood clots.

They told me to ask the following

Why haven’t I been referred to a specialist in the condition as there can be a case for surgery.

Why do I have a diagnosis of non cardiac chest pain that is NOT applicable given the extensive history/ severity of my disease.

That the MRI cmr scan often doesn’t show Microvascular Disease.

I need my medication reviewed regularly.

she said she cannot believe what’s gone on and said I have been severely mismanaged and kept saying I’m sorry you are going through this.

So I’ve emailed my mp, yes there is an investigation going on but I need to be seen asap given this new information.

[Milkfairy Heart Star in reply to Jenzhearts]

Glad to hear that you had a good response from the BHF cardiac nurse.She is absolutely spot on !