Posted , 6 users are following.
I was diagnosed with a 4.1 cm ascending thoracic aortic aneurysm two years ago. In December it was found to have grown to 4.4 cm. My dr is currently monitoring this but I am now concerned because of the recent change. My blood pressure is good and I exercise most days but find myself worrying about the future. Any recommendations on how to cope with this and stay calm?
0 likes, 22 replies
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steve11598 caroljb12
Posted
Be thankful you know it is there. Keep blood pressure down. I know it is scary mine is in the aortic root. It is at 4.6 cm now. Surgeon says at rate it's growing will most likely fix in 4 to 5 years. Just know you are not alone. Wish you the very best.
caroljb12 steve11598
Posted
xtine caroljb12
Posted
Hi Carol now I know you are from the States a couple of differences in the UK might explain things:
You are much more fully aware of thoracic aortic aneurysms and the term ascending aortic aneurysms - this is still not widely recognised in the UK.
Possibly because of places like Leeds where they contest that a euphemism of swelling is usual up to 5cm and also the confusion that arises as AAA is used solely for abdominal aortic aneurysm which has a much easier prognosis if discovered; less intrusive surgery that is required for the abdomen and ability to use stents which are not possible above the heart in the ascending. Also the NHS only recognises AAA (abdominal aortic aneurysm) and does not list TAA as a condition! So no wonder facts are hard to come by. All males in the UK are offered a scan for abdominal aortic aneurysms at 65 years old at their doctors surgery. This is not offered to women. No-one gets scanned for thoracic aortic aneurysms. (There is another forum Jimbo66 for AAA (abdominal ....) but this forum is for those near the heart.
There is though a specialist centre for ascending aortic aneurysms at the Liverpool Heart and chest hospital - where they publish a lot have a big team and hold master classes for surgeons throughout the world. But this seems to be little known. I hope my 'swelling' never gets to 5 but if when it does I will be asking for a second opinion and see if I can be seen at Liverpool.
The second piece of misunderstaningbetween US and UK is the use of MRI and CT scans. The MRI is more expensive than CT scan in the States where patients or insurance company has to pay. It is less intrusive than the CT scan as it does not use radiation, it uses magnetic resonance.
I have just asked my cardiologist whether my next scan (due in April - I had an MRI in October) could be a CT scan - he said of course if that is what I wanted though I could see he didn't think it favourable because of the radiation. The imagery is excellent in both I believe.
Overall awareness of this is much higher in the States probably due to the Pulitzer prize winning article by Kevin Helliker 18 years ago in the Washington Post raising awareness. Here it seems to be hidden, and misnamed. Part of my mission is to get more publicity and clarity. It is called very rare 5 in a 1000,000 in the UK. This is not true. I feel they allow it to be used as a natural cause of death and are not investing in preventing dissection and rupture. Even private health care in UK will not consider operating till 5.5cm...it is possible to be treated at a much earlier stage in the US.
It is a big issue.
caroljb12 xtine
Posted
Hi xtine, thank you for your response. There does seem to be some differences in how these are diagnosed and treated. I have had two CT scans over the past couple of years but now am being monitored by echocardiogram to cut down on the amount of radiation. I am fine with that. I read the articles by Kevin Helliker and found them very informative. His articles have been instrumental in raising awareness and hopefully correcting some misconceptions. I have been told there is also a blog by Bill Maples that is very good that I plan to check out. [url=http://www.westga.edu/wmaples/aneurysm.html][b]www.westga.edu/wmaples/aneurysm[b].html
That's very interesting that only males in the UK are scanned for aortic aneurysms. I have read that they are more common in men but still very much present in women. In the U.S. they do not routinely scan for thoracic aortic aneurysms. Most, like mine, are found incidentally on scans when checking for something else.
You're correct - it is a big issue with no easy answer.
xtine caroljb12
Posted
xtine caroljb12
Posted
thanks carol I will check out that link.
Just to verify; only abdominal aneurysm are checked here (only in males at 65) I didn't think that either abdominal or thoracic were automatically checked in USA without a reason?
caroljb12 xtine
Posted
They are not routinely screened for however there are some screening programs that a person can do without a dr order that will assess cardiovascular risk. Lifeline is one of the programs that comes to mind. They do various blood tests and an abdominal ultrasound to check for abdominal aneurysms. Physicians don't typically screen for aneurysms at a routine physical unless a person presents with specific symptoms.