If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Receiving too many notifications? Adjust your notification settings.
Marfan Syndrome

Hello, I need some advice please, my 16 year old grandson has been diagnosed with Marfan, he has a video consultation with a heart specialist in early February, he has curvature of the spine and an indentation in his rib cage, letter received today from this specialist says he may have to wear a brace for six months or perhaps he will need surgery to insert rods into his chest, we are still reeling with the news he has this, ok, he’s very tall and thin, but never suspected anything wrong. The reason I am posting this is because the letter says her mother, my daughter is responsible for paying the 20k for surgery, this news on top of everything else is too much to bear, we don’t have that kind of money, she... my daughter has been told her current work contract will not be renewed in April so how on earth do we fund this?
Replies
Welcome to the community.
It must be hard news to digest when it's about your grand child, I have the greatest sympathy for you.
Hopefully in the best case scenario the surgery will be avoidable and the brace will do the trick. Although I understand why you are worried in the event that the surgery is the decision. Will the health professional give you the final say on it, even if they recommend surgery?
Want to tell us about your experience on the community? Talk to our chatbot and let us know.
Si sorry to hear the news you have had
It doesn't seem right your daughter would have to pay for this surgery
I would try and not worry until you have more details easier said than done I know
If you are in the UK then I would find out why it can't be done for free, and if you don't get a decent answer speak to your MP.
I'm no expert, but my long-term partner has Marfan's, so I know a fair amount about it.
Are you sure that the surgery is lifesaving? Is it the cardiologist who is saying it? Most people with Marfan's have scoliosis (curvature of the spine) to varying degrees, as well as sternum differences. They're very rarely fatal. I don't know for sure, obviously, but the fact that the NHS wouldn't pay for it suggests that the issue isn't thought to be fatal.
The biggest danger to life for people with Marfan's is aneurisms/dissections of major blood vessels, usually the aorta. That happens rarely these days because cardiologists check for signs of it regularly, and surgery can head it off.
Again, I'm no expert! Can you find a Marfan's specialist, or get a second opinion?
That letter sounds really strange... Who was it from?
Did your daughter manage to ring the doctor to ask to speak to another specialist?
Want to tell us about your experience on the community? Talk to our chatbot here and let us know what you think
Want to tell us about your experience on the community? Talk to our chatbot here and let us know what you think
Want to tell us about your experience on the community? Talk to our chatbot here and let us know what you think