Scared Stiff About Dilated Aortic Root

[cldlhd]

Can't she get a tan "standing in the English rain" ? Ya thats something but I guess the wedding gives her a pardon.
I'm fully back to normal activities wise the only thing I notice is the odd muscle pain -shoulders,back etc..that I don't remember from before but maybe things are still setting out. Even if they don't go away its not a big deal as it's occasional and it doesn't stop me from doing anything. My surgeon told me I'd be restriction free at 3 months . He's very confident in his work which can be off putting to some but didn't bother me at all- hey Muhammad Ali ran his mouth pretty good but for the most part he backed it up.

 

[Superbob]

You've gotten some great responses in this thread. I'll just toss in that I had a combined aortic valve and root replacement 10 1/2 years ago when I was 63 and an internist originally had detected my leaky valve when I was in my 20s and told me that eventually I would have to have valve replacement. IN the intervening years, I was very active, even did some long-distance running -- but we are all different, would be good idea to get professional advice about right kind of exercise to take on. Just personally, I would be cautious about weight-lifting. 5.0 was the magic number, I was told, and in final year I was watched closely with repeat echoes. I believe it was 5.5 on day of surgery. It does not seem that 4.0 would be cause for a lot of anxiety -- but again get well-informed advice -- if you are getting other opinions, that's great.

 

[pearjas]

I couldn't help but laughing out loud regarding the spray tan thing! Well, I am going to try to get back into the gym routine soon (cardio). I was thinking I'd perhaps let my HR get to a max of 150-160 beats per minute, which typically only happens when I job/run on the treadmill.

I actually had to go to the ER (probably the 3rd time going to the ER in my life) because of anxiety a couple weeks ago. This whole situation has really turned me inside out. Having to wait a year to find out what's going on, and not knowing what I can/can't do exercise wise is pretty stressful.. I do have a second opinion with a cardiologist more familiar with my condition, but it's not until Christmas Eve!! What a Christmas Eve it will be this year! lol. So until then, I'm going to be just feeling around at the gym...

Bob - thank you for your post. It's good to hear that you remained active in the intervening years. Hopeful I will be able to do the same.

I have done some looking around on the florida sleeve.. very interesting. What's odd is if you do a search on this forum for it, you only get 2 relevant posts, and one is this one! I was surprised there wasn't more on that. Even though it's new, it's good (for anxiety) sake to know that IF I get to the point of surgery, I will have additional options. I'm just wired that way.

 

[cldlhd]

I'm getting flashbacks. My wife took me to the ER once prior to my surgery because I took a migraine medication that shot my usually normal bp thru the roof. Afterwards my cardiologist said " ya you shouldn't be taking that" . Would have been nice if she told me beforehand especially seeing that she had all of my medications listed and the only thing I was on was 2 migraine meds taken as needed.
At my last pre surgery appointment my surgeon told me either get it done now or I'll see you in a year. If they feel you don't need it done right away I guess they look at like they're busy so.

 

[DachsieMom]

Hi! I noticed someone referenced Dr. Elefteriades at Yale. He was my surgeon, and although I don't lift weights, I have read his articles on the risk of weightlifting with a dilated aorta. You can google him and find them on line. I had surgery at 42 - dilated aortic root (sinus of valsalva) and thoracic aortic aneurysm - I now have an artificial valve (with connected sleeve). You could consider requesting a second opinion from Dr E. He was fabulous. My aorta was thought to be small - I think around 3.4-3.8 - but the pathology report post-surgery measured it at 4.5. I opted for surgery even with the small measurement because I was having odd symptoms every day (haven't had them since surgery) and my sister had an aortic aneurysm of 4.8 that was apparently caught in a knick of time - Dr E saved her life. Also, I am freakishly small (4'9") - Dr. E and others have researched body size and have concluded that there should not be a "one size fits all" gross measurement approach, where everyone must wait until 5.0 for surgery. I am an active runner, and I really pared back my exercise the prior several months out of fear. I am so happy I had the surgery. I feel great (I am 5 months post op). No restrictions, back to running, and most importantly, no fear. I am not saying you have to be worried with your measurements - I am probably unique because I am child-sized - but you should speak with someone familiar with your condition re: whether this is one of the conditions that can lead to dissection at smaller aortic size (Marfans is the classic example, but there are a host of other genetic mutations and conditions currently recognized as predisposing one to aneurysm or earlier dissection). And I am not saying the first few weeks weren't rough. They were. But so worth it. Ps both my sister and I had cardiologists who disagreed - said come back when it is at least 5.0. And she would have died had she waited. Not sure about me but not willing to risk it. My point is that cardiologists don't always know the most recent research (ie body surface area research) or differences with other conditions.

 

[pearjas]

It just seems like doctors don’t really pay much attention to things they should. I am in the middle of trying to get a “team” of doctors that are detail oriented and know my condition, and that’s much harder than expected. I do have a second opinion scheduled, but with a cardiologist at KU. I can’t believe he was booked until late December, but apparently he’s the only cardiologist around here with knowledge of connective tissue disorders.

I’ve read a lot of conflicting reports on the right size for operation as well, as I am not a big person either. I’m 5’6”, about 135 pounds or so. A genetics doctor is also in my future to rule out any other possible causes (such as Marfans), but obviously it’s going to take a while to get all of this scheduled and actually get in. There is also one genetics doctor at KU that I’m going to be scheduling an appointment with soon. Very frustrating how everything seems to drag on when you just want it to be over with and you want to know the answers!!

 

[Dan Zulu]

I also saw a genetic doctor (M.D.) at a major hospital, and she could not detect any genetic explanation for my dilated aortic root.

In my experience the cardiologists tend to defer detailed aortic aneurysm consultations to aortic surgeons. I received a much more comprehensive discussion with the surgeons than any of the cardiologists.

 

[DachsieMom]

I believe they have identified about 20 percent of the genetic mutations involved which give one a propensity for dilated aorta (not neccesarily associated with a Condition - could just be familial TAAD). Having the mutation does not mean you will develop an issue, either. Both my sister and I have a mutation, but both of our parents are perfectly fine. My father even runs several marathons a year at age 70! Try to find a center which is also conducting genetic research, as they are up on the latest information - ie Yale or others.

 

[AmyBL]

Hi, Pearjas! My name is Amy and I am in Kansas City, too. I am glad you found this site as the people have been so helpful over the past (almost) three years. When I got my diagnosis in December of 2012 (?) I was in shock for a long time. Fortunately, I have a friend who was a cardiac rehab nurse. After fielding many frantic calls from me that went like this, "Anne, I just felt something in my back. Should I go to the ER?" she suggested that I sign up for a program at St. Lukes Center for Health Enhancement. It was called Heart Smart and was designed for people just like us. I went to the program for about 6 months, and worked out at the cardiac rehab gym. When I was there, I was given a personalized workout and periodically "hooked-up" (technical medical word) to machines that measured my heart function while I exercised. The nurses and exercise trainer people were so helpful. It was a fantastic investment in my health.

I am happy to discuss anything I have learned to this point. Please don't hesitate to contact me.

Amy

 

[pearjas]

I am very curious if mine is caused by something involving genetics, but I'm still hoping to get into a genetics doctor. I finally got the referral to see one last week and I'm waiting to hear on that. I don't have any family history of aortic issues. I would sure like to talk to a surgeon, but it doesn't seem like that's an option for me at some point. I have questions that would be better addressed to a surgeon than a cardiologist. The problem with that is I don't know how many aortic surgeons we have around here that would be familiar with this type of thing, though I might be wrong in that..

Amy, it's good to find someone local!! I will definitely send you a private message.

 

[cldlhd]

I am very curious if mine is caused by something involving genetics, but I'm still hoping to get into a genetics doctor. I finally got the referral to see one last week and I'm waiting to hear on that. I don't have any family history of aortic issues. I would sure like to talk to a surgeon, but it doesn't seem like that's an option for me at some point. I have questions that would be better addressed to a surgeon than a cardiologist. The problem with that is I don't know how many aortic surgeons we have around here that would be familiar with this type of thing, though I might be wrong in that..

Amy, it's good to find someone local!! I will definitely send you a private message.

I would think that the vast majority are down to genetics. If you have a BAV then that in and of itself gives you a genetic tendency towards a dilated root and acending aneurysm. I saw a geneticist at Penn and he basically just did some measurements of my skull, palette , the wingspan of my arms etc and checked to see how flexible I was . The measurements pretty much ruled out Marfans and they decided it was just good old BAV.

 

[pearjas]

I believe mine is possibly caused by EDS (Ehler's Danlos Syndrome), as that's about the only thing outside the norm. I don't have a BAV. Of course finding a doctor that knows anything about genetics, EDS, or aortic issues is very difficult around here. I'm currently waiting to hear from a genetics doctor at KU after they were sent the needed referral. They are supposed to call me and let me know if they can see me. Everything is so hard...

 

[cldlhd]

I believe mine is possibly caused by EDS (Ehler's Danlos Syndrome), as that's about the only thing outside the norm. I don't have a BAV. Of course finding a doctor that knows anything about genetics, EDS, or aortic issues is very difficult around here. I'm currently waiting to hear from a genetics doctor at KU after they were sent the needed referral. They are supposed to call me and let me know if they can see me. Everything is so hard...

That's tough, I was a little spoiled I guess. At the University of Pennsylvania right across from the hospital they have one of those big, new shiny medical buildings that has cardiology,a genetics dept.and every other medical specialty I can think of under one roof . The genetic doctors who specialize in connective tissue issues like bav work together with the surgeons who specialize operating in those issues so it's pretty well integrated.

 

[pearjas]

Wow, you are VERY spoiled!!!!

 

[W. Carter]

A 4.4 is not too bad at all although it needs to be monitored yearly. Mine was 5.7 and I continued working hard and lifting anything with no problems for 2 years after diagnosis. I would get fatigued easier but it never popped.

 

[cldlhd]

A 4.4 is not too bad at all although it needs to be monitored yearly. Mine was 5.7 and I continued working hard and lifting anything with no problems for 2 years after diagnosis. I would get fatigued easier but it never popped.

Wow you have more guts than I do. Mine was measured at 4.8cm and I was restricting myself physically somewhat and paranoid about it popping so I had the surgery.I don't think I could have waited once it got up that high.

 

[W. Carter]

Wow you have more guts than I do. Mine was measured at 4.8cm and I was restricting myself physically somewhat and paranoid about it popping so I had the surgery.I don't think I could have waited once it got up that high.

It wasn't guts, it was responsibilities. I couldn't afford to take off from work for surgery and 3-6 mo. recovery. When it got to the point that I could afford to quit working I had the operation. Now i'm retired and not worrying about anything, Ain't life great!

 

[cldlhd]

It wasn't guts, it was responsibilities. I couldn't afford to take off from work for surgery and 3-6 mo. recovery. When it got to the point that I could afford to quit working I had the operation. Now i'm retired and not worrying about anything, Ain't life great!

Congrats! Enjoy your retirement.

 

[MethodAir]

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)?

 

[pearjas]

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