Mysterious u-turn: After all the usual... - British Heart Fou...

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Mysterious u-turn

Gden67 profile image
33 Replies

After all the usual tests late last year I was diagnosed with angina and severe heart disease. I was told that due to the nature of my condition stents were not an option and by pass surgery was required.Towards the end of April this year I was told the surgery was scheduled for the following week. I was not too happy about this as I was feeling really well and cycling almost daily. Also I wasn't happy about the prospect of missing a complete summer's camping and cycling. I asked if the surgery could be postponed till October which they agreed to.

Anyway, after a great summer of camping and cycling during the three heat waves we enjoyed I finally receive a message to say my surgery was scheduled for today the 7th of November . All was well until I received a phone call last Wednesday to tell me the surgeon had gone to Canada and the new surgeon didnt think I needed surgery and one stent would be sufficient.

Given the fact I was told many times by two cardiologists, the surgeon and two of his assistants and my GP that surgery was the only option and that my arteries were too blocked for stents to be suitable, plus the same advice given by a team of doctors who looked at my test results, I was mystyfied.

It seems like quite a turnaround and it has left me very confused.

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Gden67 profile image
Gden67
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33 Replies

Hello :-)

It would be quite confusing for any of us I think it seems quite a big U turn and you need answers as to why such a big change or I would want some

Try and get an appointment to speak to them if you can you need to know why and make sure you are getting the best treatment

Let us know how you get on :-) x

Gden67 profile image
Gden67 in reply to

Thanks BeKind, One of my concerns now is, should I get this decision overturned I don't think I would have confidence in the surgeon if she was going to carry out the surgery.

in reply toGden67

Hello :-)

I think I would start at getting the answers I needed first and why they have now come to this conclusion when a few months ago they were adamant Bypass surgery was needed

See what they have to say and then think about what you want to do next when you have the answers

I know this must be a shock and so confusing but you have a right to a full explanation and if you do not trust this new Surgeon you can ask for a different one to look at your case :-) x

Gden67 profile image
Gden67 in reply to

It wasn't even a few moths ago. I had a phone call out of the blue from a cadiologist (not my regular cardiologist who I see on a regular basis to monotor my medication) on the 5th October. He spoke to me at length, for at least 20 minutes. He was very pleased I was having the surgery and impressed upon me how important is was. He wrote to my GP and sent me a copy of the letter, on which he wrote this about my condition...Two vessel coronary diease on angiogram 27/10/21.

Severe LVSD

It was made clear to me that the blockage in the left vessel was too long to be treared with a stent and give the amout of other blockages, my heart would end ul surrounded by metal should stents be used.

I just dont understand why this new surgeon claims there is just one blockage and that can be treated with a stent.

in reply toGden67

Hello :-)

You need to get a telephone appointment with her or him and ask that I feel is the only way you are going to find out and you need to find out

I hope you get the answers and will let us know :-) x

Gden67 profile image
Gden67 in reply to

Thanks BeKind, I will make some enquiries.

in reply toGden67

:-) x

devonian186 profile image
devonian186 in reply toGden67

Bekind is right, clearly you need sensible answers and probably from several sources, which means proper access to your medical notes then discussions with those who can interpret it. I know it would be an extra cost but I wonder if it would be worth paying out for an independent private consultation? The diagnosis are just so different I can understand your concern and that you have lost faith in the system.

Are they trying to put off operations due to pressures and costs? I would hope not as surgery is a serious matter and quite a different thing to a stent or medication

Gden67 profile image
Gden67 in reply todevonian186

It could well be that a cost cutting exercise is behind this....either that or they've mixed my notes up with someone else's. lol

Gden67 profile image
Gden67

Thanks Gimble, I was certainly thinking along those lines, it makes sense I guess. My sister, who spent all her working life nursing came up with that possible expanation also. She advised me to contact my GP rather that the hospital, which I will be doing this week.

I haven't seen the post you mentioned, I will see if I can find it.

Thanks again.

Mountwood profile image
Mountwood in reply toGden67

I have to say Gden67, as another nurse, I agree with your sister and Gimble. After my experience over my husband's death in the hospital I had worked in I do not trust the NHS to always put the patient's good first though it pain me to feel so cynical.

I do know what you mean. I am a little confused with everything, trying to understand why I got it, then it went. But can it come back? No one can give me the answers. Anyway I hope you get sorted. Thanks.

Jongemini profile image
Jongemini

I would definitely get a second opinion once you have spoken to the new surgeon who doesn’t think you need the bypass. You will need to get hold of the angiogram pictures and medical records so that you can discuss with the new cardiologist. It might cost you £250 or so to speak to a private cardiologist if you can’t get a referral from the NHS for quite a while.

The good news is that at least someone (the new surgeon) has a more optimistic view of your condition and feels a stent and medication is sufficient.

Gden67 profile image
Gden67 in reply toJongemini

Both cardiologist that I've spoken to have explained why surgery is needed and why stents are not suitable.

HeartyJames profile image
HeartyJames

Hi Great that you enjoyed cyclng and camping. I used to go to Norway cycle camping and once even did 5000 miles tour over 8 weeks pedalling. Also done loads in UK and elsewhere.

Anyway you must get answers, it will play on your mind otherwise. Anyone would feel a total lack of confidence. Good luck with that.. You have a right to see all your medical records and maybe go through pals. Speak to new cardiologist and get a second opinion first.

Gden67 profile image
Gden67 in reply toHeartyJames

Thanks Hearty James, well done, keep up the cycling.

Wooodsie profile image
Wooodsie

Hi, might I suggest you ask the new surgeon for a second opinion. You have that right as far as I'm aware. Haveing a stent now will probably leave you constantly worrying if you have had the treatment you need.

Gden67 profile image
Gden67 in reply toWooodsie

Thanks Woodsie, I'm speaking to my GP about it tomorrow.

Silvertail profile image
Silvertail

I would be asking for another opinion. I know you have had more than one, but this diagnosis is recent.

Gden67 profile image
Gden67 in reply toSilvertail

That's what I will do

I agree this must’ve been an incredible shock for you. However, decisions made by Doctors cardiologist surgeons etc. are often made based on their professional ‘opinion’. This opinion can differ between Doctors . And no assistant would dare to disagree with their seniors, not in front of a patient at least. Within this scenario, it may be best to seek a second opinion from a completely separate team. Good luck.

Gden67 profile image
Gden67 in reply to

Thanks Jar.

It's crazy, I want to trust the medical professions, we do put our life in their hands. I will read up on Endocarditis.

Milkfairy profile image
MilkfairyHeart Star

Hello,

I agree with the other posters. Ask for a second opinion.

You could contact the Patient Advisory Liaison Service PALS of the hospital. Ask for how and why the decision about your care was changed.

Tell them how you feel, including the psychological impact this has had on you.

Usually decisions about surgery is not made by a surgeon alone. A multidisciplinary team is consulted.

I suggest you ask, has this change been made by a multidisciplinary team and could you have the written notes of the meeting summarising how they came to the decision to suggest a stent rather than surgery.

Good luck.

Gden67 profile image
Gden67

Thanks to everyone for your replies and advice. Clearly I need to find more information, if only to clear up any doubts and concerns. The bottom line is, I hope this new surgeon is right as I'm not keen on subjecting myself to such invasive surgery at this stage of my life. It's difficult not to be cynical though, my guess is it's all to do with cost cutting and maybe waiting time lists.

nilmonisikdar40 profile image
nilmonisikdar40

Heart surgery for angina and ischaemic heart disease is constantly changing and modernising all the times. The trend if any type of operation is to minimally traumatise the body and to be minimally invasive. If I was in your shoe, I would say all the professionals who saw you were right and I equally respect their opinions. Since the last surgeon wants to do the minimal, I would take his offer first. See how it goes for a period of time, and if it does not work take the next offer which is coronary artery bypass graft. Regards.

Gden67 profile image
Gden67 in reply tonilmonisikdar40

That is the way I would like to go to be honest.

richard_jw profile image
richard_jw

I think you need another opinion.

Looking at some of these posts I have to suspect that there is some other agenda here.

Like saving money.

Are they basing the opinions on an angiogram?

As I understand it this is the gold standard for looking at coronary arteries

GardenRed profile image
GardenRed

Think yourself lucky - I went through a triple bypass that some weeks later failed and I had to have stents fitted anyway. In addition a comment at the bedside from one consultant: "looks like stents would have been ok after all" - instead of the bypass. The surgery took months out of my life - I could go on.

Gden67 profile image
Gden67 in reply toGardenRed

That is food for thought GardenRed

Prada47 profile image
Prada47

Hello Why did you start along the Cardiology route?

Did you have symptoms which indicated a Heart Problem?

You don't get an Angiogram without a Cardiologist suspecting something is wrong with your Heart. Just looking at this as an outsider it looks to me like you need either Stents or a Bypass maybe your age has been taken into consideration to help with deciding what to do. It is possible that a Multi Discipline Team need to look at all the results to help decide the best way forward. Hope it all works out for.

Regards A Fellow Traveller

Shootist profile image
Shootist

it's the cut backs the surgon will have been told to do it cheap. all NHS now have a shortage of money I have astma and am told only get my inhalers at the last minuet and try to do with out because they are too expensive. The chemist told me this when I whent for my script and allso the Doctor. I had to wait 3 months for a chest exrae 7 months to see a chest specialist there's too many people on the NHS

Gden67 profile image
Gden67 in reply toShootist

That may be the case, although I recently only had to wait two days for a chest xray.

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