as anyone got aortic stenosis?

[hamble99b]

any advice or info welcome.

sandra.

[RichardE Volunteer]

Hi Sandra. I don't know much about Aortic Stenosis other than it mainly occurs with Takayasus Vasculitis. See here on the website :

vasculitis.org.uk/about-vas...

I think Behcets patients can be affected too.

If you don't mind, why do you ask ?

Regards,

Richard.

[hamble99b Volunteer in reply to RichardE]

Thanks Richard,I'm waiting for a cat/ct scan with a view to an op.

I'm upset & frightened.

sandra.

[RichardE Volunteer]

Try not to worry Sandra.

From what I can tell, Aortic Stenosis is very treatable with good outcomes via a variety of different procedures depending on the exact problem. I imagine this is what they want to determine from the CT scan.

Is this something they have just picked up on through routine tests or are you having symptoms of like dizziness, chestpain, breathlessness or fluid retention (puffy ankles) ?

I do have some personal experience of heart problems due to my Vasculitis as it caused a heart attack requiring an op to insert a couple of stents. I then went into heart failure for some time. So I do understand some of the symptoms and fully appreciate the thoughts running through your head. It's only natural but try to remember that these sort of operations are performed much more often nowadays with patients recovering well to live normal lives afterwards.

Not sure if you're a member on the FaceBook group but if not I'd be glad to also ask on there if anyone has had similar problems ? Just let me know.

Regardless, let us know how you get on with the CT scan.

Hope this was of some help.

All the best,

Richard.

[hamble99b Volunteer in reply to RichardE]

I would be grateful if you ask on my behalf.

I've had a cough for a long time that wouldn't go.

I had a chest x-ray that suggested my heart might be slightly enlarged.

I had an ultra-sound that showed that one valve that should have 3 flaps has only 2 - because his ages quicker this will need replacing if it leaks.

It also showed the aortic stenosis.

I asked about the any complications that might arise from surgery and my wegeners [wg] - he shrugged !!

then he said we'd also have to factor in the gpa !!

considering gpa is the new name for wg, I was bothered by it.

regards,

sandra.

[RichardE Volunteer in reply to hamble99b]

Hi Sandra. I'll put a post up on FB this evening and let you know.

I think I'd take the fact that the surgeon is aware of the new name for WG as a good sign and that he's clued in on the latest developments in the disease. But I'd suggest that you insist he has a discussion with your Vasculitis consultant before any operation he might have in mind. Just to make sure that he has the full facts and that between them they can take any possible precautionary measures (like giving you antibiotics beforehand) to help avoid post op infection etc.

[hamble99b Volunteer in reply to RichardE]

I was going to ask my gp to send any reports over to the wg consultant.

I'm getting over the shock more now.

It's not knowing what a symptom is due to that is unsettling - e.g. if I've been bending and get breathless and nauseous, I've always taken solace in knowing that my heart as fine and now...?

I appreciate all your support & advice,

sandra.

[Coffeebix]

Hello I have TAK/GCA and I have Aortic stenosis on both sides in my chest. I have no pulses in either of my arms because if the damage. I am under Addenbrookes Hospital. Basically they won't operate unless they absolutely have no choice, because the operations can be dangerous. In addition, they like to leave the blood vessels grow alternative routes for blood flow where possible. Blood vessels can do this. In addition, you cannot have anything done whilst your inflammation active and according to my Consultant the inflammation has to be stable for 6 months under normal circumstances before they would interfere surgically. Of course, if an emergency happened they would operate but in elective circumstances they prefer the above conditions. My stenosis cause heavy arms and inability to raise arms up for more than half minute.

[Coffeebix]

And tiredness and weakness sorry forgot to add this.

[hamble99b Volunteer]

thank you Coffeebix, that's all very interesting. it's all so new.

regards,

sandra.