My appointment results.

[themalteser]

Hi all - just to update you all. Today I had my follow up, basically, the aorta is pretty much the same 46-47mm, but said has increased from 44mm since 2009. He said that my heart is deep and couldn't really see further up, so he wants to rule any enlargement further up by performing an MRI in 9 months time. He said that I have a leak which seems to increased slightly.

He now changed my medication from atenolol to irbersatan. He said about studies that are being performed on Marfams at the moment (i am not Marfan)

He then mentioned that he will probably recommend a valve sparing procedure to preserve the valve, but replace my aorta. That really made me anxious. Has anyone of you done a valve sparing procedure? .. I asked about the time scales, he said that, best case scenario could be 7-10 years he said that this will be providing that I exercise, eat properly etc. he said that he will know better once he reviews MRI. Could be as short as couple of years. I asked about mortality rates, he said less than 1% without a tear, but further more if they have to do emergency. I asked about my risks at the moment, he said that he cannot say that I'm 100% risk free, but I should carry on as normal and watch my lifestyle.

I just feel sad. Not sure whether the above is positive or alarming. I Just came out so feel my brain priobably absorbed more the 'negative' issues! ... I don't know much about valve sparing procedure, but looked at some internet literature and looks awful. Detaching the coronaries, attaching them again, putting a graft stitches with the rest of aorta and stitch the valve... it just sounds too complicated and too risky. Any help will be great.

Thank you in advance everyone

 

[dornole]

Gee, this sounds more positive than alarming. You don't have to go back for 9 months, you have somewhere between 2-10 years before surgery, you might actually be able to help yourself somewhat via lifestyle stuff.

I don't speak Aorta so I will leave that for others . . . but I think anytime you get a reprieve that's good. It's a mental shift from being sad or angry you have this heart thing, to "whoohoo!" that you're still around and don't have really do anything yet.

 

[cldlhd]

I'm having basically the same procedure on Feb. 6th. My aorta is 48mm and although I'm not eager to have surgery I decided to get it over with . As I see it a 1% risk isn't bad and having it done under controlled circumstances with the surgeon of my choice is much preferred to an emergency situation at the local hospital. My BAV has minimal leakage and no stenosis (gradient of 5? Not sure what that means ) so I'll let you know how it goes after my quick , smooth recovery - knock on wood.

 

[themalteser]

Yes you are right cldlhd, I am thinking about it to be honest. I'm in a lot of fear now, I hate it. Please keep updating cldlhd. Is there anyone else with the same root measurement who has been like this for quite some time or who had aortic root replacement ?

Today, I contacted extent ltd about the aortic sleeve procedure. He said that I should seriously consider doing this procedure.

Too much to think about. I restarted researching over the internet about risk percentages etc and just worried overall. I'm sure I will get better....

Thanks Dornole for your reply aswell, It is positive, but its the uncertainty which I alarm myself. Example 46mm is considered to be mild to moderate dilation, Cardiologist used to tell me don't worry about it and lets keep monitoring, now he is talking about getting it replaced etc. Even on the internet, some literature says 46mm should be left alone, some literature says replace.

When the sonographer was doing my echo, she was explaining to her student what everything means and she sounded really positive, like, great flow, mild regurgitation, no ripple over the arch, great contraction and then she said, that she cannot see any dilation. So when I finished I asked her, is my root still at 46mm, she said she cannot see it, she told me that she didn't think they shrink, but maybe operator error. So I was happy in a way, until my cardiologist told me that my root is 46/47mm and he cannot see further above because my heart is very deep ? I don't understand that and I cannot comprehend what it means that my heart is deep! So maybe I was expecting to hear, that they had an error previously! and turned out to be actually worse in a way.... I think this is why I am upset in probably.

 

[cldlhd]

So you've only had an echo and not an MRI or a CT angio? From what I've heard an echo isn't nearly as accurate for measuring aorta size but it's great for seeing the operation of the valve. Maybe I'm making the right choice I guess I'll find out, unless it goes really sideways then I won't know anything but better not to entertain those thoughts.

 

[themalteser]

Just to let you know that on Monday I have my cardiac MRI scheduled, so hopefully this will show pretty much either the same or better results!

 

[camgough]

Hi Malteser,
I had the valve sparing aortic root replacement surgery in July 2010 at 30 years old. I am now facing another surgery next week as my spared aortic valve has slowly deteriorated. I am going mechanical this time, in hopes of not needing any more surgeries.

The sparing procedure is more technical than an AVR, but if you need an ascending aorta graft , there is not much difference. The coronry arteries are involved with both.

Results are good for both procedures, and I believe issues with the coronary arteries are less than 1% as well, and is usually a bleed that can be fixed.

There is no guarantee with a repair job or replacement , and I'm not sure if I would have taken the repair knowing I would have only gotten 4.5 years out of it.

 

[AZ Don]

Hi,
I had a valve sparing aneurysm graft done a little less than 2 years ago. At the time my BAV was well functioning, no stenosis or regurgitation at all. The surgeon seemed to prefer replacing the valve but if the valve was spared he estimated a 50% chance I would need a replacement someday, most likely 15 years or so in the future. I tried to research the odds myself but the numbers were all over the place and 50% seemed a reasonable estimate based on the numbers I saw. The Cardio said it was the standard of care to have the valve sparing procedure given that my valve was well functioning. The procedure is a little more complex but my surgeon said after that there was no aneurysm on the side of the root where the coronaries are, so he notched the graft and spared that part of my root as well, simplifying the procedure. Just as well because he said my coronary was short and he didn't think he would have enough to work with, so he may have to take an artery from my leg and graft the coronary.

I viewed the decision as similar to the tissue vs. mechanical question, except that I had a fair chance for never needing another surgery or anticoagulants, and that was the deciding factor. Secondary was that if I did need another valve perhaps I would buy enough time to take advantage of future technologies (valves grown with one's own stem cells or upcoming mechanical valves that don't need anti-coagulants). I believe the procedure may be more complex than a valve replacement done with an aneurysm graft, but mine took only 3.5 hours, less than most I've heard about. It's not a procedure I would have done anywhere. I would look for one of the better hospitals in your region. I had my done at the Mayo Clinic in Phoenix.

After the surgery the Dr. said the valve was not leaking but my first echo showed mild leakage and my recent appointment showed it is now moderate with my EF now below 50 and my LV has increased in size as well. My Dr. said that a leaking valve is generally going to get worse and require replacement, but the timing is unknown. Based on the sudden changes I'm thinking I may need another surgery within a couple years but my Dr. said there is a chance it could be as long as a decade - I'm hoping I can hold out for some of the newer technologies but will take what I can get when the time comes.

Re. risks of living with an aneurysm. I was all over this when I first got the news and I started a thread with what info I found here: http://www.valvereplacement.org/for...2576-exercise-and-stress-with-aortic-aneurysm. Net is that exercise is good but best to avoid strenuous exercise as well as high stress - as much as possible.

 

[themalteser]

Thank you very much for your posts. Are you facing surgery soon camgough? How was life in general after your surgeries? Did you do normal activities? Thank you also for the link AZ Don, I'm going to read it this eve. Started reading it, but was getting anxious! It happens a lot when I read about heart stuff.

Im nervous about tomorrows MRI, but hopefullu should be quick. I hate the tube thing and the noises it makes! Might take my ipod and ask them to put my music on, if it's allowed.

 

[pellicle]

Hi

I hate the tube thing and the noises it makes! Might take my ipod and ask them to put my music on, if it's allowed.

due to the massive magnetic fields I'm of the view it won't be ... but be keen to know I'm wrong (as always).

I'm just setting you up for not being disappointed should they say no.

 

[camgough]

Hey Malteser,
My surgery was not typical, as I had a few complications, but I did return to a good level of health. One of my complications was bleeding after surgery at the attachment site of the coronary artery. I was reopened and the bleeding was stopped.

Prior to surgery I was in really good shape. I would say after 2 years I was about 80% back to my runs, workouts and ice hockey. My valve began to leak more and more and I think this slowed my progress. As far as day to day energy, that was back to normal after a few months and was not an issue.

I am having another surgery this week, on Wednesday to have my repaired valve replaced. I was told that a repair should last at leat 10 years, in 90% of people. Mine didn't quite last 5 years. I'm not sure if it's because I'm younger (34) or more active, or bicuspid aortic valve.

Let me know if you have any questions, and please wish me luck on Wednesday !

 

[themalteser]

Hi Camgough, thank you for your reply. Of course I wish you all the luck, you'll be fine mate. It's annoying having to go to another surgery, but I think you're doing the right thing having mechanical as that should stop giving you problems. It's great to know that quality of life wasn't compromised after this surgery. Was your valve leaking prior to having your first surgery? How did they find out about the bleed?

I went to my cardiac MRI. You were right Pellicle, no music! The MRI machine however had lights all over, was a bit wiser and there was nature sounds like birds etc from my headphones. It took 45minutes... Waiting for results now.

 

[Rods]

I wish I had inffluence or even money to improve science tests like this one you all probably know because you research a lot...

https://www.ted.com/talks/tal_golesw...heart#t-266896


Things like the afraid of people with anneurism surgery will for sure go away a lot.
=/
themalteser, I am sure it will everything be ok in your procedure.