Aorta valve disease

[Aortavalvehelp1]

I need help and advice about aorta valve disease doctors and surgeon not doing anything till it gets to a stage of having a heart attack as the condition is classed as mild even though when attacks happen they make the person unresponsive from 20sec to 5min. Online research says a 10yr life expectancy so very worried and stressed please help

[Aortavalvehelp1]

Not even discussed they want it to get worse before they do anything such as heart attack or disease worse than mild?🤯😠

[Farmwife135 in reply to Aortavalvehelp1]

Hello my husband had aortic stenosis and after diagnosis he went to his GP who helped explain it. You should try to have further discussion with your cardiologist. They will usually monitor you with echocardiograms until an operation is needed. My hubby is now 3 1/2 years post op.

[Ageingfast]

Welcome on board.Is your AVD a specific diagnosis ?

I am one of many to have had an operation on my valve and I think i am in the most common category diagnosis of stenosis.

I had scans until the stenosis was classified as severe/urgent, then the doctors moved fast.

I never Google medical matters except NHS or BHF and I recommend others do likewise.

Best wishes

Colin

[Aortavalvehelp1 in reply to Ageingfast]

The only thing that has been mentioned is what the problem is and no treatment given or what will happen only that it mild and won't do anything till heart attack or gets worse even though walking round a shop brings on a attack or sitting watching TV can do the same ?

[Cyprus12]

I agree with the above comments. I was diagnosed with Aortic Stenosis and they monitored it annually, although mine did deteriorate very quickly and I had my gtn spray, but was lucky, as almost had a heart attack? They moved quickly, and I am 5 years post op.Please speak to your GP and ask to consult with your cardiologist, or clinical consultant, or ask them to refer you. It is scary, and I think you need to push and take matters into your own hands! I pestered continually then, but getting treatment in these times must be frustrating? Good luck and keep on it.

[Thonglor]

I understood that Aortic valve Stenosis is graded Mild, Moderate or Severe. Apart from regular monitoring , nothing is usually done until it reaches Severe level, which can take many years, unless there are other complicating factors. I was diagnosed with Moderate AVS in 2013,when I had no symptoms whatsoever, and the diagnosis was a complete surprise, and from that level it took6 years before it became severe, when I started to experience some modest symptoms. In the meantime I had merely been given annual EKGs to track progression. I certainly had no sense that I was in imminent danger of a heart attack during those years.

[Raylpa in reply to Thonglor]

Hi Thonglor I found your contribution to this string very informative. I was diagnosed with mild aortic valve stenosis in 2017 and have since had one follow up echo cardio which was reported to me as no significant change. While this was a comfort I wondered if the cardiologist would have an actual metric to indicate the rate of any progression? If any one knows the answer to this it would be greatly appreciated. For info since a stent in 2014, age 54 and my valve diagnosis I have switched to a largely whole food and plant based diet, kept a healthy BMI and exercise. Doing all I can to push further intervention down the track. Be good to yourself folks.

[Thonglor in reply to Raylpa]

Where I live (Thailand) you are given the full report for the EKG, but unfortunately is a lengthy string of numbers that is incomprehensible to the untrained eye, at least it is to mine. To compare one report to the previous one is useless for me, since I have no idea which items are the important ones. So I just left it to the cardiologist to tell me the significance of the result. Having said that, the impression I had was that those numbers did tell them about the progression of the disease.

[Raylpa in reply to Thonglor]

Thank you, that’s so helpful. I will now be asking the cardiologist to comment on the metrics at my next due condition review on the valve issue October 22 he will know if the progression is nominal or other and it’s only fair I should know too. Thanks again

[Wellington19]

Had my aerotic valve surgery in December at st barts, surgeon Mr Shipolini, great surgeon , plus really nice man

[Maninblack]

My husband was diagnosed with aortic stenosis many years ago. In 2014 he had a triple bypass but they didn’t replace the valve. It wasn’t until the end of 2018 that the valve was successfully replaced via TAVI. His condition was regularly monitored throughout. At no time were we told by Royal Papworth doctors that they wait until you have a heart attack. It was all to do with how much thickening built up reducing the flow of blood through the valve. He was getting very breathless before the op.

[mcmaccy]

Hello, I find it hard to believe that a medical professional would suggest waiting until you have a heart attack before you are offered treatment.I agree with comments made by others, and confirmed by my own experience.

I was monitored for many years after my diagnosis of aortic stenosis/leaky valve, until my condition became moderate/severe. You don't want to have a knife stuck in your chest until it's necessary. The job of your cardiologist is to judge when the time is right.

Until then, take care of your health and don't indulge in very strenuous exercise.

If you are still concerned then insist on a referral for a consultation with your cardiologist and get regular echocardiograms.

I hope that helps.

[Aortavalvehelp1 in reply to mcmaccy]

We have told them the severity of attacks but they don't seem bothered 😕 no showing of what I'd happening just a miniscule phone call telling what is wrong

[Jillymo]

Pleased try not to get to distressed about your diagnosis - I have the same !

They will keep an eye on it and keep you monitored by doing regular scans.

I have a scan every 6mnths to a year to check my aorta hasn't enlarged from the previoius scan.

If you have a good cardiologist I can assure you they wont wait until you have a heart attack. The atora is normaly rop end enlarged before they consider putting a sleeve on it.

Try not to worry.

[Aortavalvehelp1 in reply to Jillymo]

Not even been told when the next check will be and the government says still go to work even though the attacks make him unresponsive

[Jillymo in reply to Aortavalvehelp1]

I am suprised the cardiologist has not told your husband more ! My aorta is slightly enlarged and was told they would monitor it by doing regular angiograms !

I am not suffering the attacks you have mentioned that leave your husband unresponsive. Is the cardiologist aware of this ?

Non of us on here are professionally trained. If you need proessional advice I sugest you go back to your Gp or get intouch with the cardiologist who made the diagnosis.

[Rhinos67]

Hi there

Can I ask who the person is, is it you? The reason I'm asking is that when I was diagnosed with severe aortic stenosis in October I was in such a state of shock I hardly heard a word that the Consultant said. The only words I heard were Open Heart Surgery. As a result I cane home and googled 😱, until I found this group.

That made things 10 times worse.

I'm sure that Cardiology will write to the GP and copy you/them in and then when you/they get the letter maybe make an appointment with the GP to discuss.

I'm still waiting for surgery, so date given and I'm now severe to critical.

I found a Facebook group UK Aortic & Heart defects pre and post surgery. Most in the group are on the other side of surgery but they/we all support each other before during and after.

Good luck

Joanne

[Aortavalvehelp1 in reply to Rhinos67]

My husband (I'm the wife)

[Tessie28]

No not a heart attack but it needs to be at a certain stage. For example mine was critical just before operation. You will be monitored and if you disagree ask for a second opinion. 10 years is good.... mine only had a few weeks of life left in it. It doesn't mean you will wait 10 years.

[Aortavalvehelp1]

Are any of these replies from actual professionals as this is what I am looking for, the person I am trying to help is my husband (I am the wife) all he had was a phone call out of the blue no information to look through or follow up date nothing and all he does is look at online information and slump in chair when he has attacks which is distressing for me as well as for him once he comes round

[Rhinos67 in reply to Aortavalvehelp1]

You could maybe ring one of the BHF nurses if you want to speak to a professional. I think that most in this group are going through heart issues or are supporting someone who is.I hope that you get the answers that you need

[Aortavalvehelp1 in reply to Rhinos67]

I have tried they not answering even left a voocemail yesterday and no callback

[Mariawatters]

Hi not sure when you started having issues ?? My son was diagnosed with aortic stenosis when he was 3 . He had the valvuloplasty twice once when he was 12 and another at 16 when the valve started to leak . They explained to us his own valve would always be the best valve so they wouldn’t replace it until they had to . Last year he went from moderate to severe to critical when they replaced the valve on 29 th December . He was checked every year but covid meant he skipped a face to face consult in 2021 so the deterioration of the valve was missed !

I would absolutely ask to speak to your consultant and ask for him to explain to you what their plan is . They go a lot by how you are felling so don’t hold back …

[Annie-blue]

Hi. I understand completely how you feel. I was diagnosed unexpectedly with SEVERE aortic stenosis 3 years ago and thought my world was going to end. I had panic attacks and all sorts. Now, 3 years on I'm still classed as 'severe' and I do have mild symptoms and am on 6 monthly echos to check. My numbers are deteriorating but very slowly and my symptoms are minimal. I have come to terms with the fact that at some point I will need major surgery, but in the meantime I'm getting on with my life.

I have a friend who has a 'mild' condition and she just has check ups every 2 years. Everyone is different and whilst some people deteriorate very quickly others take years to get to the point where intervention is necessary.

My advice, for what it's worth, is to be sensible, understand what the symptoms could be and don't give your heart any shocks (no weight lifting or diving into freezing rivers!) but do keep as fit as you can and don't forget to LIVE - you only get one go at it and I know I wasted too much time panicking.

[Blueshark64]

I have an aneurysm with bicuspid valve and was told the same, I'm at 4.5cm and have to wait until 5.5cm before anything will be done. Try not to read too much research as most of it is conflicting at best.