An introduction

[Stowegirl]

Hi
Im from England but my second home is in Stowe Vermont where I have a property that I try to get to when I can.
Two years ago it was found I had a faulty valve at the age of 59, nearly 60. I thought I should get a couple of things sorted before I reached 60 and what I wasnt expecting was this valve problem because I had no symptoms. I have always had a heart murmur and told that it was benign. I have never had any follow ups. So, when my GP decided to order an echocardiogram, Im not sure if I was expecting to hear that the valve was critical? I was immediately referred to a surgeon in London. He doubted it was as serious as the measurements indicated and repeated the tests.
Anyway, critical it was not, moderate severe at 1.1cm and I have been having 6 monthly tests since.
In September, my surgeon decided that it had now worsened and 0.82cm and that "now is the time". I asked if I could have it done by TAVR because I had elderly parents 90 and 94 and couldn't afford to be recovering for as long as they indicated. Also, I had other issues I felt warranted a less intrusive surgery.
I was sent for an angiogram (all fine) and a CT scan (not fine because it showed up a couple of things that have delayed surgery). It also showed that I have a tricuspid valve and that there is no calcification? What on earth does that mean? Why is the valve reducing in size?
It is now February and I have heard nothing else.
Should I be worried? I have seen on here that somebody has a similar valve size and they were told surgery in 1 to 2 years?
I have just come back from a counselling session that I organised myself because the worry of it all is affecting me badly. Not sure if it can help too much.
Comments welcomed please.

 

[Paleowoman]

Hi - I haven't any answers to your questions, except to say can you contact the surgeon since, on the one hand he told you in September that "now is the time" and on the other hand it's now nearing the end of February and you've heard nothing.

I do know that the valve size is worked out using a calculation which can be influenced by several factors during the echocardiogram. Did the CT scan give a measurement of the valve ? Again, you need to contact your surgeon. Or your cardiologist ? Or aren't you under a cardiologist as you say a GP originally referred you to a surgeon.

All the very best in getting some answers quickly, anxiety is not something you need to have.

 

[tom in MO]

Hi
Im from England but my second home is in Stowe Vermont where I have a property that I try to get to when I can.
Two years ago it was found I had a faulty valve at the age of 59, nearly 60. I thought I should get a couple of things sorted before I reached 60 and what I wasnt expecting was this valve problem because I had no symptoms. I have always had a heart murmur and told that it was benign. I have never had any follow ups. So, when my GP decided to order an echocardiogram, Im not sure if I was expecting to hear that the valve was critical? I was immediately referred to a surgeon in London. He doubted it was as serious as the measurements indicated and repeated the tests.
Anyway, critical it was not, moderate severe at 1.1cm and I have been having 6 monthly tests since.
In September, my surgeon decided that it had now worsened and 0.82cm and that "now is the time". I asked if I could have it done by TAVR because I had elderly parents 90 and 94 and couldn't afford to be recovering for as long as they indicated. Also, I had other issues I felt warranted a less intrusive surgery.
I was sent for an angiogram (all fine) and a CT scan (not fine because it showed up a couple of things that have delayed surgery). It also showed that I have a tricuspid valve and that there is no calcification? What on earth does that mean? Why is the valve reducing in size?
It is now February and I have heard nothing else.
Should I be worried? I have seen on here that somebody has a similar valve size and they were told surgery in 1 to 2 years?
I have just come back from a counselling session that I organised myself because the worry of it all is affecting me badly. Not sure if it can help too much.
Comments welcomed please.

Welcome to the forum. Sorry you are here We can offer hope and advice, take the advice with a grain of salt.

I wouldn't worry, because worry can't solve anything A plan of action and information is what you need.

I don't know anything about the British NHS except it seems they are sometimes not as responsive or quick as the US systems. In the US, I would say to talk to the surgical nurse and tell them your concerns and that you want to see the surgeon ASAP since in September you were told you needed surgery and have not been contacted.

In the US, we usually have a cardiologist who works with you along with the surgeon, I would also contact my cardiologist and tell the cardio's nurse the same thing. The cardiologist can help you vet what the surgeon has recommended. They should have been copied on your tests done for the surgeon.

When it comes to TAVR vs. full open heart surgery, TAVR is not the answer in all cases although it may be in yours. You need to pick the solution that will keep you alive the longest, not have the least amount of recovery time. Recovery from full OHS w/o complications is about 6-8 weeks back to work w/o heavy physical labor.

 

[Stowegirl]

Hi - I haven't any answers to your questions, except to say can you contact the surgeon since, on the one hand he told you in September that "now is the time" and on the other hand it's now nearing the end of February and you've heard nothing.

I do know that the valve size is worked out using a calculation which can be influenced by several factors during the echocardiogram. Did the CT scan give a measurement of the valve ? Again, you need to contact your surgeon. Or your cardiologist ? Or aren't you under a cardiologist as you say a GP originally referred you to a surgeon.

All the very best in getting some answers quickly, anxiety is not something you need to have.

Hi
The valve size is 0.82cm. I don't have a cardiologist because I was referred directly to a surgeon based on the severity (wrongly at the time) of the valve condition. I don't think TAVR has been approved either. It went to the multi disciplinary team for assessent and their report is that I should have surgical intervention so I guess the answer is no. The trouble is nobody has called me back in to tell me that.

 

[Stowegirl]

Also my biggest problem is that I don't understand how it can be a tricuspid valve with no calcification and yet it is reducing in size. What is causing that?

 

[Paleowoman]

It went to the multi disciplinary team for assessent and their report is that I should have surgical intervention so I guess the answer is no. The trouble is nobody has called me back in to tell me that.

You can contact the cardiac surgery department at the hospital where you saw the multidisciplinary team. You will have a hospital or NHS number so that a secretary can get your information to find out what is happening. Your GP will also have had a report which you should have got a copy of. Chase them up ! I live in England too so know the NHS.

 

[pellicle]

Hi and welcome

I don't understand how it can be a tricuspid valve with no calcification and yet it is reducing in size. What is causing that?

I suspect that there is calcification going on, but they missed it. I'll comment on your other post too

 

[Stowegirl]

Hi - I haven't any answers to your questions, except to say can you contact the surgeon since, on the one hand he told you in September that "now is the time" and on the other hand it's now nearing the end of February and you've heard nothing.

I do know that the valve size is worked out using a calculation which can be influenced by several factors during the echocardiogram. Did the CT scan give a measurement of the valve ? Again, you need to contact your surgeon. Or your cardiologist ? Or aren't you under a cardiologist as you say a GP originally referred you to a surgeon.

All the very best in getting some answers quickly, anxiety is not something you need to have.

Hi Paleowoman. I see you're in Surrey. Im in Kent.

 

[Stowegirl]

Hi and welcome


I suspect that there is calcification going on, but they missed it. I'll comment on your other post too

Ive always been told that there is major calcification so Im thinking has it disappeared?

 

[pellicle]

Ive always been told that there is major calcification so Im thinking has it disappeared?

I've never heard of it going away ... its a bit like my age... its not going away either ;-)

 

[Paleowoman]

Hi Paleowoman. I see you're in Surrey. Im in Kent.

Hi @Stowegirl - which hospital did you see the surgeon/multidisciplinary team at ?

 

[AZ Don]

Can you not call the office to ask for an update, or schedule a follow-up to ask your questions? Perhaps a 2nd opinion would be something to consider, though it sounds like you don't really have the full 1st opinion yet. I had a meeting with my surgeon specifically to review everything again and to ask additional questions prior to scheduling my surgery for an aortic aneurysm.

 

[Stowegirl]

Hi @Stowegirl - which hospital did you see the surgeon/multidisciplinary team at ?

I am under Kings. Im beginning to think I should seek a second opinion?

 

[pellicle]

I am under Kings. Im beginning to think I should seek a second opinion?

always a good option

 

[dornole]

Schedule an actual office visit with the surgeon to get in front of them again. It sounds like somebody dropped the ball on scheduling, maybe because of the TAVR detour. You need to ask them your questions, hear your options, and choose a treatment plan (and it sounds like an OHS surgery date). Ask specifically when you can expect to hear back and whose responsibility it is to take next steps - and what to do if you don't hear within the specified time.

I'm assuming you are talking about an aortic valve?

 

[LondonAndy]

Hi Stowegirl from another Brit! And I am from Kent originally too. I agree with the comment made by TomInMO that I suspect we NHS users know only too well - that for non-urgent treatment the delay between appointments can be long. I wish that I had been more proactive when I developed shortness of breath and was going off for different tests etc - sometimes there were months between them. (In my case the situation came to a head when I had a "Cardiac Event" [not a heart attack, apparently] and went in by ambulance - a week later I was operated on and things have looked up ever since)

I would urge you to go back to your GP and get them to chase - they sound sensible, and a letter from them will make more of a difference to the surgeon, or they can refer you to a different surgeon or cardiologist of course if you wish. Or they can start the NHS referral system, giving you a choice as explained on this page from a Portsmouth doctors' practice .

I wish you well. If you are looking for other hospitals then I would definitely recommend Barts (St Bartholomew's) who have fantastic facilities and a wonderful team.

 

[Stowegirl]

Hi Stowegirl from another Brit! And I am from Kent originally too. I agree with the comment made by TomInMO that I suspect we NHS users know only too well - that for non-urgent treatment the delay between appointments can be long. I wish that I had been more proactive when I developed shortness of breath and was going off for different tests etc - sometimes there were months between them. (In my case the situation came to a head when I had a "Cardiac Event" [not a heart attack, apparently] and went in by ambulance - a week later I was operated on and things have looked up ever since)

I would urge you to go back to your GP and get them to chase - they sound sensible, and a letter from them will make more of a difference to the surgeon, or they can refer you to a different surgeon or cardiologist of course if you wish. Or they can start the NHS referral system, giving you a choice as explained on this page from a Portsmouth doctors' practice .

I wish you well. If you are looking for other hospitals then I would definitely recommend Barts (St Bartholomew's) who have fantastic facilities and a wonderful team.

Thank you for your input. Are you no longer in Britain. I have so far been very happy with the NHS but the admin isnt so good. My surgeon is lovely and I don't really want to go elsewhere. I am at Kings which also is fab but Ive heard St Barts is good too. I may try to get a second opinion there.
I cannot criticise the thoroughness of the NHS. I needed a thyroid scan too and my GP pushed it through just so we can get moving on this.
I think that after my surgeon saying the time is now last September, it does worry me. I don't even know if Im on a waiting list. Ive had all sorts of scans because I asked if TAVR. This brought up other things and they have been acted on. But now I feel deserted. I will chase via my GP because I don't have a cardiologist. To be honest I still have travel insurance and I want to know if I can travel again as Ive kind of put it on hold for a while.

Where in Kent are you from?

 

[LondonAndy]

I am from a village near Rochester, and although I posted a couple of things whilst on holiday in the Canaries I am back in wintry London.

I so agree with you about it being the admin of the NHS. And it is a constant source of disappointment that there is a lack of a national computer system where different hospitals and clinics have access to medical records. But when you get to see the actual medical people they are indeed excellent.

 

[Stowegirl]

Well you will know Meopham then.