congenital heart Disease

[AH31]

Hi to you all

I was born with a heart condition and I have always been happy and healthy keeping up with my sibling, cousins and friends throughout my life. I enjoy sport and keeping fit but not worried about being competitive.

I have recently experienced symptoms and waiting for a heart replacement.

I have numbness in both arms mainly the left daily, palpitations, chest pains and lightheaded even when I’m sitting down but until I have the surgery It’s the new normal.

Does anyone else have these symptoms xx

[Tos92]

Hi  AH31

Welcome to your first post.

I also have a congenital heart defect in the form of a myocardial bridge. This is when the artery tunnels through the heart muscle instead of sitting on the surface. I only found out about mine last year when I was 29.

What type of congenital heart condition do you have if you don’t mind me asking? There maybe others on here with a similar heart condition to yours that could help you further.

I was able to do most things normally too up until last year when I had a heart attack and the defect was found. I do experience some of the symptoms that you do such as daily heart palpitations and chest pain. I experience arm numbness and dizziness occasionally.

Have they found you a replacement yet, or are you still on a waiting list?

Wishing you all the best.

Tos

[AH31 in reply to Tos92]

Hey my condition is called Truncus arteriosus is a birth defect of the heart. It occurs when the blood vessel coming out of the heart in the developing baby fails to separate completely during development, leaving a connection between the aorta and pulmonary artery.

[Tos92 in reply to AH31]

I haven’t heard of this defect before but I really do hope you get a transplant soon. Will be keeping my fingers crossed for you 🤞🏽. Let us know once you get an update.

[C2sam in reply to Tos92]

Hi Tos,I have the same as you - myocardial bridge - and you're the first person I've seen on here that sounds like they're in a similar situation to me. I'm in my early 30s and been so dizzy all day every day this week along with some ectopics, so just wanted to ask if you've ever had long spells like that, lasting days?

Also out of curiousity, what were your symptoms before your heart attack? Wondering if there's anything I should be aware of or should look out for, because I'm constantly having some kind of symptom or another so I never know when to really take it seriously.

[Tos92 in reply to C2sam]

Hi C2sam

I hope you’re well.

Sorry to hear you are symptomatic from having a myocardial bridge. It really is a niche club.

I don’t have long dizzy spells, but I do have periods of ectopics that come and go. I think the longest I’ve had ectopics has been a week. Mine are more often accompanied by chest pain and sweating as opposed to dizziness. It would be a good idea for you to measure your BP when you’re having dizzy spells and keep a log of this.

Both dizziness and arrhythmias can be symptoms of myocardial bridging due to the compression of the coronary artery. Some also have kinks in their myocardial bridge as a result of being compressed for so long.

Have you been seen by a myocardial bridge specialist?

I had chest pain, upper back pain, arm pain, and pain in the jaw as well for 1.5 years before my heart attack. My symptoms were dismissed as anxiety or long c*vid at the time. I then later flew on holiday for the new year in 2021, and had the heart attack at the beginning of 2022 when my myocardial bridge spasmed. It is thought that I have coronary artery spasms as a result of my bridge now.

There is a Facebook group which is dedicated to myocardial bridging. If you’re not already on it, you may benefit from joining and there’s a lot of good info on there from both patients and surgeons that carry out unroofing on myocardial bridges.

m.facebook.com/groups/Myoca...

If you have any more questions, feel free to PM me :).

Tos

[Hidden]

I have a congenital heart defect of ebsteins anomoly. As you say when younger you do what your peers could do. But as you age things change. Sorry to hear of your problem. Take care.

[Yumz199725]

Hi welcome to the forum. I also have congenital heart disease I do experience dizziness, light-headedness and palpitations but not the numbness. Hope your not waiting too long for your new heart ♥️. What congenital heart defect do you have I have coarctation of the aorta which I had repaired, bicuspid aortic valve severe aortic regurgitation and moderate stenosis, ventricular septal defect I will eventually need valve replacement surgery. If you wanna talk more I'm always available to chat ☺️. Take care and all the best and keep us updated on your heart transplant status and surgery 🥰.

[AH31 in reply to Yumz199725]

Truncus arteriosus is a birth defect of the heart. It occurs when the blood vessel coming out of the heart in the developing baby fails to separate completely during development, leaving a connection between the aorta and pulmonary artery.

I am sorry to hear you have experienced the same symptoms, it is nice to talk so people because my Gp runs a mile and tells me to go to A&E but I’m not that bad to sit up there constantly

[Yumz199725 in reply to AH31]

Ahh I've heard of this heart defect before but I've never understood what it meant you explained it really well. Yeah that's all my GP tells me to do but when I go to A&E they don't have a clue how to help me ☹️. I don't experience these symptoms all the time but I have my good and bad days 💔. Last time I was having breathing problems went to GP and he's like the symptoms your explaining you should go to A&E and I'm there like no way am I going there to sit around for hours just to be sent home at the end of the day anway. I have told my specialist nurse about my symptoms but they feel its not heart related which is fine but what's causing it then I've had blood tests and holter monitors ecgs at hospital and doctors surgery, still remains a mystery 🤷‍♀️. Wish you all the best and if you wanna ask me anything else just private message me x take care!

[Hidden in reply to Yumz199725]

I understand where you are coming from Yumz. When I go to hospital or doctors they don't understand my condition. When I say ebstein anomaly they say never heard of it? Gives you confidence. The only person I have been able to feel, understands me is a lady in America who had her epsteins anomoly found at 55 and she is now 70, she has had no operations and is being looked after on medication. However as she ages then where is the next step? I know the congenital teams understand the issue but normal health service people don't. Sometimes you become the expert over your condition and have to explain it to them. What is incredible is that 1% of all births world wide will have a congenital heart issue of some kind. So there needs to be more research done to help improve the situation. Thanks for listening. You take care.

[Cat04]

I had a bicuspid aortic valve replaced by OHS earlier this year and have pins and needles /numbness in both feet and hands. I have mentioned it to my GP who doesn't seem concerned but it is uncomfortable & irritating. I'm going to mention it to my surgeon when I have a telephone appt with him later this month. Very best wishes for your surgery.

[MillaZ]

I also have a congenital heart defect, and it's called patent foramen ovale (PFO). It is a hole between the left and right atria. This hole exists in everyone before birth, but at birth, it closes. PFO is what the hole is called when it fails to close naturally after a baby is born, as it was my case. I only discovered this at 46 (when I almost popped my clogs!).

I am able to do most things, but when the weather is very hot and humid, I feel completely lifeless; it is very hard to even get out of bed, because my heart feels so heavy and tired. I get brain fog, also.

[Pefki]

I was born with critical aortic stenosis and bicuspid aortic valve which required immediate surgery so I knew I always had an issue with my heart. Like you, I was very active all through school, able to keep up with sports(not allowed to play in very competitive teams), all fine until maybe late last year when I started to feel tired, out of breath, especially going up hills and stairs. Ended up at emergency in February after chest pains just wouldn't go away. Luckily, I had my first consultation at St Barts GUCH scheduled mid March and then it was just a couple of weeks before I was operated on and I am now 4 months post mechanical aortic valve and ascending aorta replacement. It was urgent. Feeling much better apart from some numbness left side of the chest scar which may or may not go away eventually. I can walk without feeling exhausted, I can climb hills, stairs, swim and apart from the annoying medication, things are much better than they were before. I'm 29.