Scared Stiff About Dilated Aortic Root

[cldlhd]

Question (Pellicle, anyone), would an ascending aortic Dacron sleeve repair and mechanical aortic valve replacement reduce the odds of any potential future aortic root dilation (where the aortic root is left intact, and connective tissue conditions like Marfans are not extant)?

I know this doesn't exactly answer your question but if you're getting a mechanical valve I would think you would just get the dacron graft that replaces from the root up to and including the ascending that already has the valve sewed in. You wouldn't have to worry about the root and I imagine the operation would be shorter.

 

[W. Carter]

W Carter - I'm curious, how tall are you and how much do you weigh? (If you don't mind me asking)

6' 180 lbs.

@ cldlhd, Your correct, that is the easiest way. Mine is one piece that does it all from root to valve.

 

[cldlhd]

6' 180 lbs.

@ cldlhd, Your correct, that is the easiest way. Mine is one piece that does it all from root to valve.

That was the route I was going if the valve wasn't repairable, it was, so I ended up having the root, ascending and hemi arch replaced with dacron while keeping my valve.

 

[MethodAir]

I know this doesn't exactly answer your question but if you're getting a mechanical valve I would think you would just get the dacron graft that replaces from the root up to and including the ascending that already has the valve sewed in. You wouldn't have to worry about the root and I imagine the operation would be shorter.

That does make sense. That looks like what I had done. Thanks cldlhd.
.

 

[pearjas]

There sure appears to be a lot of options. Given I've never spoken to a surgeon, I wonder what my route would be with just an aortic root dilation, but everything else is 'normal'. Like the carbo-seal above - is there any cutting or anything involved? I sure wish I could find out about these operations, but there are so many, with such little info available.

 

[Richie Rich]

Hi pearjas - your situation sounds like mine. I'm currently at 45mm (sometimes 45 , sometimes 46 or 47) been like this since I discovered it back in 2009. I take 300mg of Irbesartan per day (since January. Was on atenolol before) Irbesartan is similar to losartan.. Apparently the trick is to have the highest dose, I.e 300mg. Like you, this is in my mind on a daily basis and I am currently thinking about some decisions I need to make which includes:

1. PEARS procedure. This is a procedure developed here in the UK by Tal Golsworthy an engineer who 'fixed his own heart'. He is Marfan. The problem with this procedure that it's not been fully tested in bicuspids and I don't think it's been tested in Ehlers. The added issue with bicuspid is because of the valve! The procedure makes complete sense to me! Wrap the aorta and hopefully no more enlargement. For me the what if issue is whether my bicuspid valve will leak more on the future? However, get in touch with Tal. Honestly he is extremely good and a very nice chap. I am in the process of talking about this procedure more with one of the surgeons (Conal).

2. Wait till it reaches 5.0! And cross that bridge when I get there. My cardiologist did say that sometimes, the aorta stops dilating and especially with the Irbesartan, it's proving some great results! ... Who knows!

The issues around the above for me are:

1. I am scared shi * about surgery; and
2. I am scared shi * living like this!

So like you, I got no idea what to do! My cardiologist thinks I should wait and see. No real restrictions apart from usual heavy weights etc.... But I understand, these "what if?" questions eat me alive.

P.s I am 32.

Hi Malteser,
I'm a UK member too but I've not heard of the treatments you mentioned, are you a private patient or are these available on the NHS. My Aorta is only 4.1 and I don't worry about it anymore my cardiologist told me when the valve or aorta is ready then both will be replaced. I don't look foreward to surgery but I'd like to have it done before something goes wrong, my concern is that as an NHS patient things will be left too long & my health will deteriorate.

 

[pearjas]

I wanted to again thank everyone who has responded. I sometimes get to feeling anxious, or just down in general, and I'll go back through here and read some of the messages.

 

[pellicle]

I wanted to again thank everyone who has responded. I sometimes get to feeling anxious, or just down in general, and I'll go back through here and read some of the messages.

I think that describes us all at some point. As one who still has days (should that be daze) of anxious feeling and uncertainty about a great "many things" I hope you see them for what they are and wait till the shadows pass before making decisions.

Best wishes

 

[pearjas]

Hey everyone,
It's been a while since i've updated. I finally had my cardiologist appointment on Christmas Eve with Dr. Mulhern at KU (I hand-picked him given he had experience with connective tissue disorders). I wasn't sure how I was going to feel after this appointment, but I am somewhat relieved. I did get "officially" diagnosed - ehlers danlos hypermobility type. My aorta measures 3.9mm at it's highest point, and he said that I continue to run and lift weights - as long as I'm not struggling or straining with the weight, which increases BP. He said heart rate doesn't really matter, so I don't need to monitor that as closely.

I am going back for another echo in June. I asked what the likelihood is that I will need surgery. He said if I came back in June and it was larger, there was a decent chance, but otherwise it wouldn't unusual if I was an old man and this never became a problem. He was up to date on studies, and I discussed the possibility of medications with him. Here are the other major points I gathered, which I wanted to share (some I already mentioned):
-He said he could tell I was not likely vascular type EDS or Marphan's or Loeys-Dietz based on my physical features and clinical features.
-He said it's all about blood pressure as far as monitoring this and I could continue running and weight lifting, as long as I wasn't straining, which typically increased BP.
-He said his medication of choice would be a beta blocker and was familiar with several studies, though I was hoping to hear him say Losortan instead.
-He examined my chest, mouth/teeth, face, skin, legs, hands, arms, and everything in between (at least it seemed like it).

I am relieved that I finally found a doctor who knows what Ehlers Danlos Syndrome is!!! Hopefully everyone had a good Christmas?

 

[AZ Don]

Glad to hear that you got some good news and found a Dr that understands your condition. What a nice Christmas present!

 

[pearjas]

Exactly - that's exactly what I was thinking too! I guess in June I will find out if the dilation is growing or not....

 

[pearjas]

I would like to thank everyone who contributed to this discussion. When I originally started it, I was literally scared stiff... I was wondering how I would EVER be able to cope with the anxiety. I still obviously have it, but I actually have saved every message from everyone in this thread and re-read the responses from time to time. I can't thank everyone enough. I should also mention that on July 14 I will have my follow-up echo at KU, followed by a review of it with my cardiologist about an hour or so later. We'll see how everything is doing from there.

 

[Catie]

That's coming up soon, Pearjas. Hoping you get the best possible report next month.

I totally understand feeling great anxiety surrounding heart issues. But having support and encouragement and reading about other people who have walked the same road helps.

 

[pearjas]

Thank you Catie.