Aortic Dissection / Aneurysm Survery

[RobThatsMe]

Hi Everyone,

As many of you know, I had to have my aortic valve replaced due to a dissection that tore into my aortic valve. I now have a St Judes Valve, and 4 inches of dacron for a graft.

I am trying to find out how many of us out there also had or have a dissection that lead to valve replacement. I have not been able to find much information regarding Dissections. Most are associated with aneurysms, which, if both are involved, usually occur after the dissection, as mine did.

I am specificly looking for some good sites that provide detail information regarding dissections, possible reoocurance, life expectancy, etc.

The reason I thought I woukld start to look more closely at this hs because I found a site recently that talked about only a 46% survival rate at 10 yrs post op. Of course, I realize that there are many factors that probably went into that percentage. None the less, it sure sparked an interest in me to do more research.

Thanks,

Rob

 

[DickV]

Dissection

Dissection

Rob, I have the same valve and graph but pls. explain just what is a "dissection."

 

[RobThatsMe]

Hi Dick,


An aortic dissection is a tear in the inner lining of the aorta (the main artery that carries oxygen-rich blood from the heart to the rest of the body), creating a space between the inner and outer layers. If blood leaks into that space, then a variety of potentially fatal conditions could result, including heart attack or stroke.

There are two types of aortic dissections: acute and subacute. Acute aortic dissections involve sudden, severe symptoms and may require emergency open-heart surgery. Subacute aortic dissections involve more gradual symptoms and may be treated with medications (e.g., antihypertensives). Aside from diagnosing and treating underlying conditions that could increase a person?s risk of developing an aortic dissection (e.g., Marfan syndrome), there is no known strategy for preventing an aortic dissection.

I had an acute dissection.

All they can say is that it was congenital, they can't isolate the actual cause.


Rob

 

[fdegranville]

Dear Fabio,

I never got a chance to comment on your glamour shot........wow
!!!!! But seriously, how often do you go for echos?? and did they tell you to take it easy on the weight lifting? Even with that tiny image and my poor eyesight, I can tell you are doing SOMETHING to keep in shape. Whatever the stats are, you will definitely beat the odds. Have a happy 4th.
Francesca

 

[RobThatsMe]

Hi Francesca,

Yes I do have restrictions. My cardiologist does not want me lifting anything over 45 lbs for the rest of my life and my vascular surgeon basically agrees, however, he says I should lift light and that I should know my limits as to what "light" is. They both want me to do more cardio workouts at the gym. Bottom line, I don't lift anything over 60 lbs at the gym. I do high reps with light weights instead. That is a major change from what I used to lift for well over 14 years. I also walk at a 4.4 mph pace on the treadmill and get 2 miles in 30 min.

I have lost some bulk, but I can stay toned using this exercise routine. As for having echos, I had a base line echo done after surgery. I also had a CT, and have had a CT twice since, 6 month and 1 yr annivsary. They now want me to have a CT once a year, unless they see any red flags. I seem to be stable for now. CT scans give a more accurate look at dissection and aneurysm development once they have been discovered. They recommend the echo to start with because it is less expensive, but the CT is the most accurate method.

I feel great! I workout 5 days a week, and try to manage my situation, while still leading a wonderful life. <smile>

Hope things are well with you, I see you have been traveling often too. Next week I start traveling again, Monday through Fri, and also over a few weekends. I'll be mostly in East TN near Chattanooga, and also have to go out to Los Angeles for awhile.

Take care, Happy 4th!

Rob

 

[Braveheart]

Aortic Valve + Root Replacement

Aortic Valve + Root Replacement

Hi Rob

I too have been wondering what the long term prosnosis is for this kind of surgery. I did not have a dissection thankfully. But, I did have my aortic valve and first 5inches or so of the ascending aorta replaced with a Dacron Conduit. My surgery was nearly 3yrs ago now.

No one has given me any information about the future i.e. will the graft and/or valve need replacing. I really no nothing about what to expect. I guess they don't want me to worry about things that are a long way off. However, I feel it's good to know a little of what to expect.

On Monday I had an MRI scan of my aortic arch. The doctors were checking my ascending aortic graft and also the new graft in my upper descending aorta (at the site of a 2nd aneurysm). All seems to be well, though I need to see my Cardiologist in a couple of weeks for the full report.

I guess with any of these operations it's important to have regular/periodic follow-up to assess things.

Please let me know if you find any useful information relating to this surgery.

Regards - Jonathan

 

[Beverley]

Hi Rob - I suffered a large tear in my descending aorta which has not been repaired and a smaller tear in my ascending aorta which was repaired with the dacron graft when I got my valve replaced. I have Marfan syndrome and my disection occured while I was at work totally out of the blue moon. I am told that there is a remote chance that I could still suffer an aneurysm in my descending aorta but that the chances are slim since I have had a valve replacement. I have been told that I am VERY lucky to still be here. Hopefully, We'll still be around in 10 years.

Beverley in Houston

 

[Beverley]

PS Rob there is information regarding aortic dissections on the Marfan website a marfan. org

Beverley

 

[Bob Gleason]

Aortic Replacement to Rob

Aortic Replacement to Rob

I had my root and arch replaced due to an ascending aortic anuerysm.....7inches of dacron tubing and a St Jude Mechanical. I did not have an aortic dissection and I welcome finding out about longevity issues regarding the conduit.

Rob what was the site that gave you the 46% survival rate after ten years?

 

[RobThatsMe]

To Bob Gleason

To Bob Gleason

Hi Bob,

This is the site that I found the information.

http://www.ctsnet.org/residents/ctsn/archives/not75.html


I'll let you know if I find any info regarding the issue of life expectancy for us folks with grafts..

Rob

 

[RobThatsMe]

PS Rob there is information regarding aortic dissections on the Marfan website a marfan. org

Beverley

Hi Beverley,

Thanks for the information. I'll check it out. Also, Have you visited Bill Maples site for people with aneurysms and dissections?

I also have my narrative posted there. It is also posted here on this site.

Check out Bills;' site. The Address is:

http://www.westga.edu/~wmaples/aneurysm.html


Let me know if you have any trouble getting there.

Rob

 

[Gail in Ca]

I had a dacron graft done in '89 along with a
porcine valve. The surgeon took out the piece of
ascending aorta as it fell apart in his hands when
he was trying to cut into it to place the graft.
The pathology report showed granulomatous aortitis
(I had an aneurism of 6cm). However,no one can really give me any info on this as it is rare.
Doctors haven't mentioned that the graft will ever
be a problem as the aorta grows thru it and around it accepting it as it's own.
Rob do you not know what caused the disection, was there an aneurism that you didn't know you had
that ripped?
When I had my redo avr to mechanical the surgeon had to cut into the graft, thru the aorta wall that had grown over it, to get to the valve to replace it. It was just sewn back together and I assume the aorta will grow to repair that cut also. I wonder why the site you read about gives a
bad prognosis for the graft? Or is it that you may have aneurisms along the arteries that could pose a problem. For 2 years after my '89 surgery I had
tests done along my arteries in stomach and legs (echo-type) to make sure I had no more aneurisms
but then they decided that it must have been a one
time problem and stopped.
I know it is very frustrating to not know why something happened and then to wonder if it will occur again somewhere else. I gave up worrying about it many years ago.
It seems like we can get just enough info to make us curious and even worry a bit, but no good answers.
Gail

 

[Freddie24]

Hi Rob,

I was diagnosed with an ascending aortic aneurysm about 2 years ago and just had the David Procedure a little over 6 weeks ago. The replaced the portion of my ascending aorta that had the aneurysm with a dacron graft but spared by valve since it was in good shape. After talked with Dr. David, he answered all my questions like the one you just posted. According to him, he said that the chances of developing future aneurysms was very slim since they would likely have shown up by now if they were going to be a problem. He also said that my life expectancy and quality of life would be completely normal after this surgery since they basically just excised my 'problem'. Now please understand that I did not have a dissection, nor did I have a valve replacement but I would imagine that the prognosis would be relatively similar for people who experienced either of these things in addition to, or instead of, an aneurysm.

There will always be a slight chance of developing future aneurysms (or dissections) but as long as the chance is slight, and since there's not much we can do about it anyway, I'm not overly concerned. If you're having regular check-ups, I would imagine that the doctors would catch anything out of the ordinary long before it ever becomes a problem.

Keep the faith.
-Freddie24