Coronary Sinus Reducer experience? - British Heart Fou...

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Coronary Sinus Reducer experience?

Wingnutty profile image
19 Replies

I had a adenosine stress perfusion MRI yesterday as a private patient and my consultants secretary phoned me to say that my consultant wants to see me perhaps as early as tomorrow. I asked why he wanted to see me so quickly after yesterdays scan because he said in an e-mail that it would be a week before he got to see the results of the scan himself. She said that it was something to do with getting me in for a coronary sinus reducer (CSR) before March because the NHS is going to stop funding them from March onwards. Not sure why he is talking about the NHS when I am seeing him privately. Anyway, his secretary is going to phone me back this afternoon to arrange a meeting with him. I had never heard of a CSR before, so a quick google of it looks like it is a small implanted device. Minimally invasive which probably means going in through an artery in the arm or leg to get to the part of the heart they want to get to. The results from a study in the Lancet of these CSR devices is less than glowing with patients reporting no improvement in angina symptoms while physicians report that angina has improved by the tests they make, so I don't know what to make of it. Has anyone ever had one of these devices? I can't help wondering if the NHS is withdrawing funding because they don't appear to work.

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Wingnutty
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19 Replies
10gingercats profile image
10gingercats

when you get to see the surgeon you will need to ask him why he is so convinced this is a good idea for you to have this implanted device.You need to know why it will be good for you and not good generally.....in my opinion.If possible get a second surgical opinion on the device .Also you could ask the opinion of one of the Brit Heart F. nurses.

Wingnutty profile image
Wingnutty in reply to10gingercats

Yes I will do. I'd like a first hand account of the device if possible before I see him, but his secretary hasn't got back to me yet, so maybe I'm not seeing him tomorrow now.

Milkfairy profile image
MilkfairyHeart Star

Hello,

I am aware of coronary sinus reducers.

Many years ago, before my diagnosis of vasospastic angina was confirmed, I was offered a CSR. I decided it wasn't for me. A good choice, as anybody with vasospastic angina is excluded from any the trials, as a CSR could potentially make coronary vasospasms worse.

Nobody is sure how a CSR actually works.

The coronary sinus reducer is an hour glass shaped stent, that is placed in the coronary sinus, this is a vein where the blood flows to from the heart.

It's thought that the coronary sinus reducer works by making the blood pool in the heart for longer.

The CSR is implanted by an Interventional Cardiologist.

There is a recent research study carried out at Imperial Health Trust, London that seems to show that the CSR can help reduce the symptoms of angina for some patients with refractory angina.

It seems to be better suited for people with ongoing angina following stents or coronary bypass surgery rather than people with microvascular and vasospastic angina.

I suggest you look at the authors of the research study I have linked from Imperial.

They perhaps are a possible route to a second opinion.

At the end of the list of authors you'll see the email address of the lead author.

thelancet.com/journals/lanc...

Good luck

Wingnutty profile image
Wingnutty in reply toMilkfairy

Thanks Milkfairy. That Lancet study you refer to is the one I was talking about in my initial post. The consultant's secretary never got back to me this afternoon, so I won't be seeing the consultant tomorrow after all which gives me a bit more time to look into it.

Z3tea profile image
Z3tea

good morning, I had a CSR for refractory angina with regard to my MVA , 6 months ago , I knew that it would not help my CAS. My experience has been very positive . The difference is definitely medically significant and I am pleased that I had it and feel very grateful and lucky and blessed . Please do ask me anything more if you would like to

Milkfairy profile image
MilkfairyHeart Star in reply toZ3tea

Just out of interest were you offered a functional angiogram using adenosine and guidewires along with acetylcholine to confirm your diagnosis?

Did you have the coronary sinus reducer implanted during a trial?

Are you in the UK?

Z3tea profile image
Z3tea in reply toMilkfairy

Good morning Milkfairy , can I first say thank you for all your posts I have felt so supported by you .

Yes I had the functional angiogram with adenosine and acetylcholine with wires and I went to the Bristol Heart Clinic as they have a equipment which allows results to be measured by computer rather than visually by the cardiologist . Interestingly the computer came up with the same levels .

This was not the first instance of functional angiogram to confirm diagnosis . I have had a diagnosis since 2009 . I also had functional angiogram with my cardiology team two years ago .

Milkfairy profile image
MilkfairyHeart Star in reply toZ3tea

Thank you for your kind words.

As the forum don't allow us to post Cardiologist's names.

Could you message me the names of the Cardiologists involved?

Z3tea profile image
Z3tea in reply toMilkfairy

I am not sure how to message rather than post , please how do I do that ?

Milkfairy profile image
MilkfairyHeart Star in reply toZ3tea

I have sent you a message

Maltise profile image
Maltise in reply toZ3tea

Hello . Could you please give me the info as well . As I wrote before I am struggling with angina probably vasospastic and am not able to tolerate any meds . Thanks .

Milkfairy profile image
MilkfairyHeart Star in reply toMaltise

Here are some details of the trial in the UK about using a coronary sinus reducer to potentially treat microvascular dysfunction.I spoke to the Principal Investigator and he was very clear that anybody with vasospastic angina is excluded from the trial as CSR could potentially make coronary vasospasms worse.

The use of CSR is experimental.

Before being considered for he treatment, a person has a functional angiogram using adenosine and guidewires along with acetylcholine.

The coronary sinus reducer is an hour glass stent which is inserted into a vein of the heart.

clinicaltrials.gov/study/NC...

You might be interested in taking part in this survey being carried out by a world leading expert Cardiologist and a patient group.

surveys.adelaide.edu.au/red...

Maltise profile image
Maltise in reply toMilkfairy

Thank you very much for all the info . You are always so kind to answer and indeed a very accurate source of information . I started looking at the survey .

Wingnutty profile image
Wingnutty in reply toZ3tea

Thanks Z3tea, good to hear from someone who has had one of these devices. I was very sceptical of them after scan reading the Lancet article, but your experience has swung me back to at least listening to any advice the cardiologist gives me, which I think will be to get it done.

Wingnutty profile image
Wingnutty

There was miscommunication between the cardiologist's secretary and everyone else which meant I missed my original slot to see the cardiologist today, but he saw me later anyway.

It turns out that the NHS end of financial year is 31st March and after that date, instead of funding the CSR devices (13K each) in the way they have been doing, they are going to have a big discussion about how they will be funded in the future. I think this is called kicking the can down the road and my cardiologist believes it is so they won't have to fund them for about 18 months, so if I am going to get one, I have to get it done soon or I would have to fund the 13K myself.

The American FDA has asked the CSR manufacturers to run a study for angina patients whereby they would have either a CSR or a placebo device inserted. If you were to receive a placebo, they would tell you 12 months later, then offer you the real CSR device free of charge. In return you have to log your angina symptoms on a telephone app each day. They have had trouble recruiting patients in the USA and Canada, so they are extending it to the UK and that was one of the options open to me if I wanted to go down that route, but it would probably take longer and I would have a 50% chance of being stuck with a placebo device for 12 months. I think he said there would be no fees though if I did this.

My adenosine perfusion MRI scan results show that I have significant areas of the heart which are ischaemic under stress which is the likely cause of my angina, but I need an angiogram to determine the exact source of the flow restriction. It's possible that I could get this as early as the end of this month. Amazing how fast things can happen when you get your wallet out. During the angiogram, they may put in a single stent in one of the arteries depending on the results. If it looks like that wouldn't help, I will go down the CSR route and hopefully get it done before the end of March but with the list of patients he has, the timing will be tight.

I was told that on average the CSR devices will improve angina symptoms by one class. There are four classes whereby class 4 is pain at rest, Class 1 is no pain except in extreme exertion such as running a half marathon. Not everyone benefits from the device though. Some have no improvement in symptoms at all while others have 2 classes of improvement.

I recorded the meeting, so I will go through the recording tonight and see if there is anything worth adding to this that I might have forgotten about.

Milkfairy profile image
MilkfairyHeart Star in reply toWingnutty

There is a trial taking place at the Royal Brompton in London into using a CSR to treat microvascular dysfunction. Again there are problems recruiting to this trial too.

clinicaltrials.gov/study/NC...

It's a difficult decision as there are so few studies available to help make an informed decision.

Living with frequent episodes of chest pain is no fun.

I live with refractory vasospastic angina. I am struggling again as it's so cold at the moment.

I end up in hospital at least once or twice a year for 10 days, on IV GTN and morphine to settle my vasospasms.

I hope you are able to make the decision that is best for you as an individual.

Milkfairy profile image
MilkfairyHeart Star in reply toWingnutty

Here are the latest National Institute of Clinical Excellence NICE guidelines for Coronary sinus reducer use.

nice.org.uk/guidance/IPG712...

Are you going to be offered a functional angiogram?

Reversible myocardial ischaemia can be caused by a permanent cholesterol blockage or microvascular angina.

Wingnutty profile image
Wingnutty in reply toMilkfairy

Thanks Milkfairy. I must admit he didn't talk about the safety outcomes part of that guidance concerning potential worsening of symptoms, device migration, vascular perforation (not good for someone on warfarin) and procedure related mortality. I will be having a functional angiogram before CSR implantation and if they find a blockage that looks like it would benefit from a stent then they will do that and review me at that stage before making a decision on CSR implantation.

Milkfairy profile image
MilkfairyHeart Star in reply toWingnutty

It's good to see that more people are being offered functional angiograms. It was very rare, 10 years ago, to be able to have a functional angiogram, when I had mine done. It was how my vasospastic angina was confirmed.

The NICE guidelines also suggest that a multidisciplinary team makes the decision, which is common best practice in the NHS.

If you are found to have microvascular or vasospastic angina, it may be helpful to see an expert in these conditions too.

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