I was diagnosed with a leaking bicuspid aortic valve in December 2021. I am waiting on further tests to confirm how severe.
Sadly, I have been getting chest pain for a very long time (since March 2020) and I was initially told by an NHS GP that I was suffering from Post Viral Fatigue.
I was getting nowhere with the NHS over several months so decided to go private and have spent thousands and thousands of pounds trying to find out what’s wrong with me.
Anyway, to cut a long story short I found out that my heart valve was leaking. I am getting bad heart palpitations and stinging pain in my chest. I know my heart is enlarged from my echocardiogram, however don’t know anything more yet.
I am worried and more frustrated at the length of time it has taken to diagnose and the fact I’m still waiting on further tests.
Can anyone recommend anything I can do, or if they have a better experience going private?
Any advice or information would be greatly welcome 🙏🏻.
All the best,
Adam
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AdamJames157
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It is sad you had to pay to go private to get this far
I am not as experienced as some members on here that will no doubt have better advise but I would talk with my Doctor even though they sound like they let you down before but ask for a referral and that you feel you need one urgent rather than waiting
If you do not get anywhere and you can afford it and the Doctor lets you down than I suppose private is a route you can go down but I would push to get through our system first
I am just concerned. Particularly as I keep experiencing a fast pulse in the area of my left nipple. I have pain too, but not sure what either really are.
Hi Adam . Where do you live ?? My son Shane was left with a leaking valve since he was 16 after a procedure to have the valve stretched . He was bicuspid . He is now 34 and has just had the valve replaced in December . We live in the uk .
Many thanks for your reply. I live in Edinburgh. I am sorry to hear about your son but I hope he is doing well. What type of operation did your son have? I hope you don’t mind me asking, but I know there is a lot of information out there about different procedures and different valves. Please send my best wishes to your son.
Ask away Adam that’s what’s this site is for.A brief history … he was born with aortic stenosis and we were told he was bi cuspid .
He had valvularplasty to stretch the narrow valve when he was 12 and again at 16 when his aortic valve started to leak .
This didn’t give him any bother until he had a routine MRI two years ago and then covid hit so he didn’t get a face to face with his consultant.
He had a face to face in November with an associate of his consultant who explained the valve was in bad shape . This was a shock to us all so rang the consultant who organised an echo scan which confirmed our fears .
He had an onyx mechanical valve replacement on December 29th and is doing extremely well.
I’m only telling you the story so you take things into your own hands now . I assume you have a consultant that you see every year or so . Call him and tell him how you are feeling and don’t talk around it all tell him you are in pain . No one should have to go private in the UK especially at your age !
Hi Adam, I would bring the results of thef private investigation to your GP and ask them to urgently refer you to a consultant cardiologist. Probably you would Nedd an MRI to assess how severe is the leak. Do you live in London?
Many thanks for your reply. I will certainly do that. My GP is pretty hopeless sadly but I will try. I live in Edinburgh. I just want further answers now and to get surgery if I need it.
Hi Adam,I will write long about my experience so you won’t feel too bad about your case.
I had similar situation to you. Since Jan 2020 my GP prescribed me with acid reflux tablets and sent me to post covid clinic. I went to 4 different london hospitals and went through detailed lungs, stomach and throat checks snd tests (ct, endoscopy, biopsies ets). And they said my issue was acid reflux and anxiety at UCLH. I went to A&E twice since last July. Final one was in September. Again they did ecg and sent me home with gaviacon. I could see the ecg says “abbormal”.
So giving up my hopes here I went to Turkey last October as private was way too expensive to afford in UK.
In Turkey a gastroenterologist diagnosed something was wrong with my heart so he referred me to cardio there. There it was discovered my mitral valve needed replacing urgently (leaking and stenosis). It was causing enlargement in my heart as well. So i missed 2 years going from one place to another in NHS basically.
Upon arrival I called my GP and he said UK doctors needed to diagnose me to make sure it was accurate??? I thought this was arrogant and rude. He referred me to eco but said you might have to wait 8 weeks plus. In Turkey I was told to have the op by Christmas.
As a result I found a private doctor and clinic that does eco and ecg. He diagnosed me straight away and wrote to my GP a detailed report about the urgency of the operation. I was then referred to Barts in London where a surgeon put me on his waiting list in November. He also said my situation was severe and quite urgent. In the mean time they did CT angiogram to see if anything else is wrong. Nobody called me since then which makes me think other things are ok.
Last week i got a call while at work and told my op is on 10th february so i should start shielding/isolating myself straight away.
So here i am working from home and waiting for my operation.
Basically i went to private cardio doctor and asked him to refer me to nhs. Thats how I got where i am in two years. Don’t stress. Once you get the diagnosis everything moves smooth and fast. You will be fine. Just go easy on your heart. Take things easy until your heart is sorted.
I'm 67, but have known I had a bicuspid valve since I was 17.
Just before Christmas 2020, I decided to see a cardiologist privately because of worsening symptoms and getting nowhere with the NHS after seven months of waiting.
It cost me £220 and was the best £220 I have ever spent in my life. He diagnosed heart failure and the need for a replacement aortic valve. He sent an urgent email to my GP for immediate medication which I got the next day. I told him I couldn't afford to have the operation done privately as I was self funding.
He managed to get me a clinic appointment in the NHS and I was put on the urgent list for valve replacement. In May 2021, I had the operation as well as a replaced section of my enlarged aorta.
A few days after discharge, I collapsed for some reason, was blue-lighted to hospital and given a cardiac rehabilitation pacemaker under local anaesthetic.
I'm doing well now and enjoying normal activities including riding my new Harley motorbike! I see the consultant cardiologist privately every few months because I trust him. It only costs £110 each time. Money well spent.
I would insist on proper NHS care, using the medically professional assessment you have had. If your GP is unhelpful, get a second opinion or, if all else fails, go to a private cardiologist.
I hope you get the treatment you deserve very soon. Good luck.
Many thanks for getting back to me and for displaying your own symptoms. I hope you’re doing well. It sounds like you are and I previously rode a motorbike too so it’s something that I am very much looking forward to doing in the future. Prior to March 2020 my health was good and I was very fit. I exercised six times a week with no medical issues whatsoever.
However, sadly my symptoms have got worse and I am no further forward as of yet. I am getting a bit frustrated to say the least.
I appreciate you getting back to me and wish you all the very best.
I’m so sad but not too surprised to hear that although you’ve already had a few exams privately, they still haven’t given you an exact and clear solution to your problem.I have very low esteem for the private medical sector, I feel that they’re trying to squeeze you dry and the best specialist work in the public sector too.
If I were you at this point, armed with my data, I’d visit my gp and demand to be urgently referred to a specialist.
An enlarged heart is a sign that your heart is struggling to pump blood for your body demand.
You probably need corrective surgery but that will be decided and discussed with the cardiologist.
When I was seen for the first time during an outpatient clinic, on the same day, just a detailed echo gave enough information to the consultant for telling me I was in a critical state and would have needed surgery ASAP, he saved my life.
Thank you for your reply. I will try. My GP is hopeless sadly. I am sorry to hear about your own experience too. The private sector has its problems too and I feel like the NHS is as bad as it can be.
I requested my medical notes and my own GP repeatedly commented that I appeared fit and healthy. I clearly haven’t been and I would expect much better from health care professionals to be honest.
They shouldn’t go on appearances and I know myself that at times I have looked dreadful.
It’s just so disappointing and frustrating to say the least.
Wow, I consider myself a touch luckier than you Adam, my cardiac consultant came to see me soon after an echocardiogram to tell me my heart was enlarged too. I too have a bicuspid aortic heart valve with an ejection fraction of 54%.
I’m going to have another echocardiogram this February.
As for medication I take ramipril as this can lessen the expansion of the heart.
Is there another hospital within reach of you? I would certainly ask to be referred somewhere else if possible. Take your results to your GP and insist on getting an urgent referral I suspect if he private consultant you saw thought it was immediately urgent, he could have admitted you on the NHS. That happened to me some years ago with a spinal problem. After being bedridden in horrific pain for months and getting absolutely nowhere with the NHS I saw a specialist privately although the appointment was at the NHS hospital where he worked. He admitted me there and then on his NHS list.
Thanks for your reply. There is another hospital which is where I am going on the 10th February for a Transesophageal echocardiogram And I’m still waiting on an appt for a cardiac mri scan.
Not feeling the best however in the meantime. My heart keeps doing silly things, although my heart rate is relatively normal . I keep a fast pulsating sensation in my left nipple and stinging chest pain.
I just want to get to the bottom of it and quickly. Many thanks for your comment. Best wishes to you. I hope spine is better and that you’re doing well.
Hi Adam, so sorry to hear about your experiences, unfortunately it sounds a common story. I am 61y and bicuspid diagnosed when 57y. I had a mechanical valve fitted in 2018 and lead a normal lifestyle except extreme sports! I recommend Minimal Invasive Surgery which is what I had. The recovery was much faster and the scar is small in comparison to the norm. Only downside is that I have to take Warfarin daily to stop the valve clotting. When I was in my ward there were 2 young men in of similar age to yourself and they have recovered well also. I almost went private because of the NHS wait but it all unravelled very quickly in the end with NHS. I suggest you pay for private consultation and hopefully he/she will recommend urgent NHS treatment. If pains persist I would check in to A&E and bypass GP. Keep us all posted. All the Best. Simon
Thanks Simon. Do you mind me asking what your experience was like?
I went private for diagnosis, however my consultant has referred me back to NHS for TTE and cardiac MRI scan. TTE is next week and MRI scan following Monday.
Is Minimal Invasive surgery available on the NHS? I live in Scotland l, however I’m going to ask for this type of surgery if it available.
I’d rather get the surgery done as quickly as possible as I’ve been getting some unpleasant symptoms.
Glad to hear you’re doing well and thank you for replying to my message. Much appreciated. All the best.
Hi Adam I have just come across your post sorry for an extremely late reply. Hope you was able to get your surgery. I also have bicuspid aortic valve severe aortic regurgitation and moderate stenosis so will eventually need valve replacement surgery. I have cardiac MRI at some point this month or next (still waiting for appointment). Wish you all the best.
I am well, thank you. I had surgery 10 months ago and have a new aortic valve (Edwards Inspiris Resilia). Hope you’re well. Sending best wishes to you too.
Ah so glad you got your surgery! Glad your doing well. I was looking at your post about pulsitle tintis is this when you can hear your heart beating in your ear? I've had that problem for years don't even notice it anymore thought that was normal? My regurgitation is severe has been for bout 5 or 6 years now I'm stable which is the main thing. Is there any other issues you had leading up to your surgery that turned out to be caused by your leaky valve? I been getting acid reflux and upper back pain and my legs hurt so much in the morning did this happen to you before your surgery. And also noticed on one of your posts you said you had pain in your neck I have that aswell it's every day! 💔. On minimal exertion I have told my consultant bout this but he didn't seem concerned which is good but just don't understand why I feel like this ☹️.
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