BAV/Aneurysm Study in Canada

[Tdot]

Hi folks

I previously posted in another thread that I've been selected to participate in a new study being run in Canada. This came about after referral to a surgeon for a consult. I thought I would start a new thread that I could update periodically on the study progress for everyone's information.

This study is being commissioned based on the recent positive results that Losartan was found to have on patients with Marfans. The purpose of the study is to evaluate a potential role for beta-blockers or ARBs in delaying the progression of aortic dilatation in patients with BAV. I will either be given Atenolol, Telmisartan or a placebo and the study is double blind so I wont know what I'm taking. They are recruiting over 400 people in Canada, 20 or so in Toronto. Its 5 years starting with a 3 month and 6 month follow-up then yearly thereafter. My first appointment is Jan.24th for MRI, echo and other tests. My current status is BAV with trivial regurg, no stenosis and aortic root 43-45 (to be confirmed with MRI since I had two different echo results).

I'm kind of looking forward to this as it will ensure I'm closely watched and I may benefit from the drugs. I'm also a little scared given my anxiety with my yearly appointments but maybe this will desensitize me and make the visits easier.

Anyway, will keep you posted.

 

[07sti]

Very interesting. I'll be checking back to see how things go. In the meantime, keep busy to help with the anxiety!

 

[njean]

Sounds very interesting.

Good luck and keep us posted!

 

[AZ Don]

Interesting study, thanks for posting. I looked it up and found a description of it here: http://clinicaltrials.gov/ct2/show/...olol+Telmisartan+bicuspid+aortic+valve&rank=1

 

[Tdot]

Quick update. I recieved my MRI rests today and my root baseline dimension is 42mm. I have an appointment for physical next week and I will be given he actual drug for a run in period of 4 weeks to see if I can tolerate it.

 

[ottagal]

Quick update. I recieved my MRI rests today and my root baseline dimension is 42mm. I have an appointment for physical next week and I will be given he actual drug for a run in period of 4 weeks to see if I can tolerate it.

Thanks for sharing the update! I am sorry, but don't recall what your measurements were from your echo. Are they close to your MRI results? Personally, it is great to be a part of study as you will be followed very closely (always nice to get a little extra attention. :wink2

 

[Tdot]

Hey ottagal, I had a strange few months actually. To summarize in 2010 I had an MRI indicating 43. Since then I had 3 echos yearly indicating 43 as well. This past November I went for my annual checkup, same tech and machine, and she got 45mm and 58 for my lved...previous years was 51. My cardio says yup things are changing and you might have cardiomyopathy. So I freak a little(see my previous post which I've updated with this new info). My cardio sends my to a surgeon In December. He measured 44mm root and 51mm lved. He booked my MRI which now shows 42 and lved normal.

The MRI results will also be used for my baseline in the study. THey will also do an echo march 4th and start me on the meds

 

[Tdot]

Hi everyone

Just an update, good news bad news. Bad news is I do not qualify for the study. Good news is because the study dr reviewed my recent MRI and my ascending aorta is only 37mm. Apparently the study doesn't look at the root but only ascending aorta and criteria is larger than 37mm. I believe my last MRI in 2010 was close to 37 also but have to check. So anyway I'll followup with the surgeon and ask if it's worth trying some medication or not but might just be follow ups for now.

 

[Duffey]

That is good news! Best wishes going forward.