Search results

Hi Manuel, your English is perfect! I'm Maltese and live in the UK, now moving to the Netherlands :) I was in Dunblane a few weeks ago, stayed at the Hydro park Double Tree. Beautiful area. I also loved Glasgow, but not so much Edinburgh. What a story! 3rd Marathon and at 3 hours 31 mins...

Hi Manual_Scotland. Please may I ask, the decision for doctors not to give you a PEARS, was it because your valve is leaky or because the aorta is large? I know that there have been Marfan patients, whom their aorta was 54 mm or so and they still had PEARS. So I guess its because your valve is...

One last thing, my cardiologist ordered a genetic test for me. Has anyone done that?

Thank you, Paleo; I asked my cardiologist, and he said that he would actually record the images on his phone so that I will be able to send it the specialist in Holland. Today, I had some more time with my cardiologist. Basically, because of the PEARS procedure, the NHS guidelines for bicuspid...

I called a surgeon in the NL. He wants my echo readings, etc. to evaluate. Because its the NHS, however, I have to jump a lot of hoops before I can get the reading!

Not great is it? I have the appointment tomorrow. It's going to cost me money, but I need to clarify a few things. I don't want to suddenly jump into surgery when it been relatively stable for now. I may be arguing against the benefit of preventing an untoward event, but the way I see it is that...

Thank you so much all. As always, very helpful. Below is a bit of a vent. I hope you do not mind. I had some time to think by staying awake all night! :) I am still moving to the Netherlands; I don't see the point in putting my life and my family life on-hold just because of a glitch! The...

Oh Lord... its time!! I cannot believe it. Couldn't be at the worst of the worst time! My cardiologist said that there had been a minimal change, he stated that last year it was 46mm and it's now 47mm. He said that at 47mm, he thinks that it's best if I got it over and done. He like me to go for...

Hello to everyone. Another year has passed, and so I have another check up in a few hours time! I'm okay, just a bit nervous because next month I'm emigrating for a year or so the Netherlands. I'm hoping that everything is stable so I can start focusing on my move, and not worry about this...

manuel_Scotland I think it's a no brainer. Stats are excellent and the procedure seems less risky than others. It's NHS funded and I think surgery is performed by Mr Austin. I don't know where I read it, but professor treasure, now retired who was one of the first surgeons with professor...

3.0 is within the normal range! The root is always a bit larger than the rest of the aorta.

Hello mate! Yep I was in touch (and still am) with Tal Golesworthy. Incredible guy. I also talked to professor pepper and made some research including discussing with my cardiologist. The PEARS is definitely the way forward and outlook is great, 100% success as you said apart from the guy who...

Hi Paleowoman - I have private insurance as well, but I pay a lot of premium and I'm quite reluctant to use it until i really need to, as I will lose a lot of my NCB! NHS is very good, but so time limited, everything feels a rush and when I have my appointment, first I get the tests, height...

Hello - this is the thing, because cardiologists waters this condition down, they make you believe that it is not serious, but 'Googlemed' says otherwise! In regards to my wife, we had another chat and she said that she was searching about my condition, reading abstracts and research papers in...

Hi Paleogirl, thank you for your post; I did not know that heart is cooled; there is also a total circulatory arrest? Literarily doctors cools down the whole body to around 14 degrees, but don't use bypass? I'm sure that's for aortic arch repair though. I'll look for the book by Carol you...

Thank you . My surgery, when I ever need it will be for the aortic root replacement and possibly valve if it starts going south. I think statistically speaking, the risk of surgery is low. My wife was talking about that she seen somewhere they will cool me down for 20 minutes or so, but I...

So my wife got a bit tipsy yesterday and so to speak, she opened up to me saying that she is too scared to lose me for this condition on the operating table! Whilst crying; WTF? She never talked like this in 7 years I known about my condition and always told me you're exaggerating etc. etc...

Hello valdab- how are you doing? Yes, I remember, we do have exactly the same issue at exactly the same size. What does your cardiologists tell you to do? Mine keep saying to continue as normal, not to worry about it, it may be years till surgery etc etc. , but then I think , I'm only like 3mm...

Pellicle: I must admit, i did ruminate about the whole story quite a bit and it did question my resolve, so I now have to work harder and learn more how to quiet my mind. It's just the coincidence of it all took me by surprised, but I do feel "better", much better. :) You must be hectic with...

Hello all and thank you, as always, this forum is amazing for all support given. Agian - that is very true, I guess if she had to write a book about it, it must be very rare indeed! The coincidence though of opening a book that had some similarities to my conditions, from all millions of books...