Pectus Excavatum

[Claire0617]

Hi - new on here. After some advice , anyone got experience of heart problems caused by a chest wall deformity - pectus excavatum? Only recently diagnosed by MRI. Seems it’s mostly considered cosmetic but my ECG is abnormal and I’ve had palpitations for years . Everything else on MRI was normal

[Tos92]

Hi Claire0617

Welcome to the forum.

I’m sorry to hear of your diagnosis. I expect it was a bit of a shock.

I don’t have any experience of the heart condition which you are enquiring about and it does sound like perhaps, it’s quite a niche condition as well. I hope there are others on here who can provide you with some insight and advice into the heart condition.

Wishing you all the best.

Tos

[Claire0617 in reply to Tos92]

Thank you Actually it was bit of a relief as they initially thought it was ARVC which was worrying . I have great experience over the last few months of many diagnostic tests so hopefully I can help others

[MummaSoap]

Hi Claire

I don’t have any personal experience of this but my ex boyfriend’s brother had this and occasionally he used to have difficulty with his breathing but I don’t know if it was related to it and other than that, he led a normal life. I just wanted to drop in though and welcome you to the forum - hi 👋🏻

Hopefully some others will be along soon and may be better positioned to answer your questions.

Best wishes

Soap 🧼

[Claire0617 in reply to MummaSoap]

Thanks Soap hi to you too 👋🏽. Yes I’ve been very healthy until last few months so maybe it is one of those things that gets worse as you get older 🤣

[MummaSoap in reply to Claire0617]

I hope you get some answers and strategies to make you feel more comfortable 🤞🏼🤞🏼

[Silvertail]

I have it, my father had it and one of my sons has it. Some of us have scoliosis to some degree. With us it's hereditary. My son's was very noticeable when he was a baby. He has chronic asthma and was told by one doctor he would need surgery later in life. Another doctor said he wouldn't need it, and he hasn't. I can see that it could compress the lungs/heart.

[Claire0617 in reply to Silvertail]

Thanks for the reply . Yes I’ve read it can run in families but seems to be much more common in men. The surgery looks painful so glad to hear your son is doing fine without it . I think that is the case - my heart is being squished a bit

[Silvertail in reply to Claire0617]

Yes, we were told it is a painful operation. My son, at 50, still has asthma and lung damage, but is much better with the latest meds. He does his own injections (Can’t remember the name) as well as two inhalers. I don’t know how much it has impacted him, but he also has RBBB.

[Ramilia]

Hi Claire0617 ,

A 13-year-old family member of mine has just had surgery for the condition. His concave chest was starting to compress his heart. The NHS said that surgery could wait until he was around 18, but a second opinion (luckily a parent had family BUPA through employment) said now was better.

From the point of view of it being cosmetic, certainly this young man was a bit embarrassed in front of his school mates at sports etc., but the surgery was necessary.

When I read your post last night, I hoped that you weren't being fobbed off with your condition being 'mostly considered cosmetic' simply because you are a 50-year-old woman. I encourage you to ask lots of questions of your doctors. Wishing you well.

[Claire0617 in reply to Ramilia]

Thanks Ramilia ! Yes think I will get fobbed off by the NHS ( when they finally arrange a follow up appointment) but luckily I do have private insurance from work so I’m going to go see a private cardiologist. They can’t really say it’s cosmetic as I’ve never noticed it 🤣. Hope your relative is healing OK , surgery looks pretty painful ! Thanks for your best wishes