Aortic-root aneurysm

[Judy12205]

Just wondering -- are aortic-root aneurysm topics appropriate on this list?

Judy
Albany, NY

 

[pellicle]

Hey Judy

yes ... sure are. I've had one replaced, a few of us have here too ... what's up?

 

[AZ Don]

Yep, I had mine replaced as well.

 

[camgough]

My aortic root is also replaced.

 

[cldlhd]

Mine is "freshly" replaced, a little over 3 weeks ago.

 

[RobThatsMe]

Yup, mine ruptured, in March of 2000, emergency surgery, 3-6% chance of surviving, and I made it.
(hint)... don't wait till it ruptures..

 

[Judy12205]

1. Is there a way to be notified of replies?

2. As for the aortic aneurysm -- about ten years ago I asked my internist to order an echocardiogram to rule out a particular cause of migraine. After he received the results, he called me and said that he had good news and bad news: I didn't have the patent foramen ovale (PFO or "hole in the heart") that can cause migraines, but I did have aortic regurgitation, which I later learned was in my case caused by an aortic aneurysm. I consider myself fortunate that I asked for the echo back then or I might never have learned that I have the aneurysm.

For most of those ten years, the size of the aneurysm remained quite consistent, and my cardiologist felt it might never need repair. But the size of the aneurysm last August (c. 4.8 cm but I'm having another CT scan as soon as it can be scheduled), accompanied by the fact that it has grown more during the past year than the doctors would like, means that I may be a candidate for surgery sooner, rather than later.

Cleveland Clinic's formula (aneurysm size combined with my height) and the first surgeon I've seen (here in Albany) agree that I might already be a candidate for surgery. Other hospitals (e.g., Mass. General) wait until 5.0-5.5 cm. I would prefer not to be a "ticking time bomb" but don't want surgery before I need it!

How did you all choose hospital and surgeon? Did you have a second (or third!) opinion? I have to confirm the number of surgeries this first surgeon has done because the number he gave me on Friday may have included abdominal aneurysms. Due to the stress of travel (for some reason -- perhaps a level of anxiety -- travel is stressful for me, which I learned when my blood pressure spiked during a recent trip) and because my family is in the area, I would much prefer to have the surgery done locally. But I don't want to short-change myself!

I guess that's enough info for now. Questions/comments would be appreciated!

Judy
Albany, NY

 

[cldlhd]

I'm 6'2" , 215lbs and my aneurysm was measured at 4.8 cm but I decided to have it repaired. Interestingly at the time of my surgery the TEE I received at the hospital said it was 4.99cm. I also wanted to avoid the" ticking time bomb ".

 

[AZ Don]

Hi,
You have to manually subscribe to a thread to be notified of replies.

So your aneurysm was the same size for years and then an echo indicated it has suddenly grown. The echo is not particularly accurate and this scenario is very often due to the margin of error in the echo test. The CT scan will clarify.

The current general guidelines for surgery are when the aneurysm reaches 5.5cm, though these are only guidelines and some Dr's will look at it differently:
http://content.onlinejacc.org/articl...icleid=1838843

I've read that once an aneurysm exceeds 4.7cm it virtually always continues to grow, so the way I looked at this is that the risk of surgery was inevitable, but the sooner the surgery the less the risk of dissection. But I was lucky, when my aneurysm was found I met the surgical criteria at the time (5.0 w/ BAV, since raised to 5.5cm in the latest guidelines), so my OHS was scheduled promptly.

Re. Dr/Hospital. Due to insurance changes I can't go back to Mayo Clinic, Phoenix, but my Cardiologist there told me that if I ever need another operation, it's not the type of operation to have just anywhere. Because I was lucky enough to live near the best hospital in the state (see http://health.usnews.com/best-hospitals) and saw a top ranked Dr. (See https://www.castleconnolly.com/), I only saw one surgeon though I did get a 2nd opinion from a Cardiologist. I don't know much about hospitals/Dr's in the Albany area. I suggest you investigate them. Although you don't like traveling, keep in mind you are little over 2 hours away from some of the best Cardiac hospitals in the country (Columbia Presbyterian, Brigham and Women's hospital, and Mass General). Many people travel for OHS and riding in a car was not at all difficult for me, though I only had a 1/2 hour ride.

 

[skeptic49]

I had aneurysmal tissue from the root extending all the way up into the proximal arch. All gone now (Feb. 16.) My ascending aortic dimension was 46mm on film...47mm via interoperative TEE. My surgeon told me that the walls of my aorta were tissue thin. I'm glad it's all gone before it ruptured or caused a stroke.

 

[Judy12205]

Okay. I've subscribed. Thanks for that advice.

I had a CT scan six months ago, and that showed a 4.7-cm aneurysm, which was consistent with the echo. But I'm having another one Wednesday, so we'll see what that tells us. Soon I'll be glowing in the dark. :-(

Again...Cleveland Clinic (and the surgeon I've seen in Albany) has a formula that includes the size of the aneurysm and your height. That formula indicates that I, at 5'4", with an aortic-root aneurysm of 4.7 or 4.8 cm would be a candidate for surgery. Other hospitals, including Mass. General, say 5.0 to 5.5 cm. I'd like to know why there's such a big difference. I sure don't want to feel like a ticking time bomb!

Did any of you travel for several hours to return home following surgery?

How did those of you who had surgery feel a week or so following the procedure?

At this point I'm so confused about what to do! I would love to be closer to home when it's time for surgery to reduce the stress level. I'm receiving mixed messages from friends and family though. I know it's my decision, but...!

It's bad enough to probably need this surgery. What's making it even more stressful is deciding where to have it!

Judy
Albany, NY

 

[Judy12205]

How do I include a tag line? I thought I set it up...but nothing's happening!

Judy

 

[pellicle]

How do I include a tag line? I thought I set it up...but nothing's happening!

what is a tag line?

 

[pellicle]

Did any of you travel for several hours to return home following surgery?

only an hour in the car .. felt like forever ... every bump bothered me ... I was exhausted when we got home

How did those of you who had surgery feel a week or so following the procedure?

did you see that picture of a train the Skeptic held up? Like that ... but each day got better ... but seriously I can't over state this : forget about that stuff, really in 2 years it will be a dim memory and by 10 you won't even recall much of it.

This operation is not about how you will feel in a week, its about living another 30 years.

To be honest unless you're considering having it done in bangladesh every major hospital will do about as good as every other major hospital. This is not new ground breaking stuff its well studied and how to do it is well distributed . If I had a dollar for every person who said "I had my operation done at ******* by Dr ******* and they're the best in the world" I'd buy food for a year.

 

[AZ Don]

I'd like to know why there's such a big difference. I sure don't want to feel like a ticking time bomb!
From the guidelines that I posted earlier:

In patients with bicuspid aortic valves, data are
limited regarding the degree of aortic dilation at which the risk of dissection is high enough to warrant operative
intervention in patients who do not fulfill criteria for AVR on the basis of severe AS or AR. Previous
ACC/AHA guidelines have recommended surgery when the degree of aortic dilation is >5.0 cm at any level,
including sinuses of Valsalva, sinotubular junction, or ascending aorta. The current writing committee considers
the evidence supporting these previous recommendations very limited and anecdotal and endorses a more
individualized approach. Surgery is recommended with aortic dilation of 5.1 cm to 5.5 cm only if there is a
family history of aortic dissection or rapid progression of dilation. In all other patients, operation is indicated if
there is more severe dilation (5.5 cm). The writing committee also does not recommend the application of
formulas to adjust the aortic diameter for body size. Furthermore, prior recommendations were frequently
ambiguous with regard to the level to which they apply (sinus segment versus tubular ascending aorta) and did
not acknowledge the normal difference in diameter at these levels, with the sinus segment 0.5 cm larger in
diameter than the normal ascending aorta. In Heart Valve Centers of Excellence, valve-sparing replacement of
the aortic sinuses and ascending aorta yields excellent results in patients who do not have severely deformed or
dysfunctional valves.

Now I believe that these guidelines are basically developed by committee, and a committee has been described as:

a cul-de-sac down which ideas are lured and then quietly strangled.

I know that not all Dr's agree with the findings above, but this was the conservative guidance that apparently the Dr's on the committee
were able to agree on.

I'll agree with Pellicle and say that every major hospital will be about as good as every other, but about as good is not the same as
"as good". The difference may be small but it's your life in the balance. If you look in the last sentence of the guidelines above,
they specifically call out Heart Valve Centers of Excellence for valve sparing aortic procedures - the type that I had. If you have
your valve changed at the same time I believe the procedure is a little easier. It really is a personal decision. I've read many
stories on this site of people that have jetted across the country to go to the Cleveland Clinic and many that went to their local
hospital, and I've read of people that have had surprising issues with top ranked Dr's and others that have had great success with
their local Dr's.

How did those of you who had surgery feel a week or so following the procedure?
I felt surprisingly good. I was taking 2 half mile walks a day by the time I left the hospital (5 days). I would have increased but was
advised to hold it to that for the first 30 days. Once home I only needed ibuprofen for pain and a recliner to sleep
in. Trying to lie down on my side was quite uncomfortable for at least a month.

 

[Judy12205]

Tag line: that extra text that you see at the bottom of some messages (e.g., "At age 51 diagnosed..." above).

Concern about a week or so following the procedure: If I do travel a distance for the surgery, I will have a very long ride home. There's no nonstop flight, and I think I'd be better off dividing the long ride into two days, rather than taking two airline flights. I'm just wondering how rotten I might feel during that ride.

No one has said that I have a bicuspid aortic valve, but my last echo showed an increase in regurgitation. I'm having a CT scan tomorrow. If the results are similar to those of the echo, I will need to have the valve replaced.

Regarding using a recliner to sleep: I have sleep apnea and use a CPAP machine. Since that reduces the possibility of my not breathing for an extended period of time, I'm quite sure that I will be expected to use it. I'll have to see how it goes and determine whether moving a recliner to a position where it can be near an electrical outlet for the CPAP machine is a solution. Typically, however, I can't sleep in a recliner...or even on my back. I'll have to play that one by "ear."

I agree that the "best" hospitals and surgeons aren't the only really good ones. The surgeon I've seen so far locally has an excellent track record. The question is whether the hospital itself provides the same level of care as some of the larger ones. My family (including "doctor relatives") are strongly urging me to go out of the area. I realize it's my life, but their "advice" is resulting in stress and anxiety.

I truly appreciate your input. I don't know anyone who has had aortic-root-aneurysm surgery, so thanks for being here!

Oh, and I'm still not being notified of new messages even though I've "subscribed." :-( Okay, I see that I haven't entered an email address. I'll have to figure out how to do that.

Judy
Albany, NY

 

[cldlhd]

I didn't see you mention your valve,is it bicuspid? If you get something more complicated like aortic valve repair I would factor in the surgeons experience in that specific operation a lot more. I agree with pellicle that if it was an aneurysm/ valve replacement than Its probably a more common procedure. Having said that if I had a choice between the best surgeon in my area or the 7th best I'd still prefer the best. He'll I'm picky when choosing a mechanic to work in my car- usually do it myself.

 

[pellicle]

Hi

Tag line: that extra text that you see at the bottom of some messages (e.g., "At age 51 diagnosed..." above).

I think that's in the persons settings ... never bothered with it, I thought it was called a signature ...

Concern about a week or so following the procedure: If I do travel a distance for the surgery, I will have a very long ride home. There's no nonstop flight, and I think I'd be better off dividing the long ride into two days, rather than taking two airline flights. I'm just wondering how rotten I might feel during that ride.

it can vary (as you've read) but I wouldn't be doing it unless the local hospital was winning the score chart on hospital acquired infections and mortality. (winning meaning high scores meaning bad)

Regarding using a recliner to sleep: I have sleep apnea and use a CPAP machine. Since that reduces the possibility of my not breathing for an extended period of time, I'm quite sure that I will be expected to use it. I'll have to see how it goes and determine whether moving a recliner to a position where it can be near an electrical outlet for the CPAP machine is a solution. Typically, however, I can't sleep in a recliner...or even on my back. I'll have to play that one by "ear."

there is no need to sleep in a recliner ... personally I hate the bloody things. I just don't like the struggle to get in and out of them (ever in my life).

I slept in a bed (after surgery) and apart from when I sleep on the couch and sleep on the floor I always sleep in a bed.

best wishes

 

[Judy12205]

Finally solved the tag-line and email-notification issues.

My aortic valve is trileaflet. I have confidence in the surgeon I've seen so far (but will get second opinion). He is the Chief of Cardiac and Vascular Services at St. Peter's Hospital here in Albany. The question is whether the hospital is as good as he is.

I will try to find more information about complications, infections, etc., at the above hospital. I am not confident that my Web searches have produced as much information as I would like, although I do have New York State statistics. One thing that can be deceiving regarding complications and mortality is whether a hospital takes high-risk cases. Fortunately, I've been told I'm a low-risk candidate. Of course, that doesn't mean that I'm "home free."

Stress affects your body and your ability to heal. So I have to find a balance between finding the best place to have surgery...and limiting stress. Any advantages to traveling to the "best" hospital could be wiped out by my unfortunate reaction to travel (e.g., my blood pressure spiked during two different pleasure trips!). I hope that nothing changes for the worse so that I have plenty of time to make the location decision.

And I'm happy to hear that at least one person didn't need a recliner. I guess there's not too much difference between attempting to sleep on my back (if necessary) and sleeping in a recliner.

 

[AZ Don]

FYI, you can find some specific info on hospitals here: http://www.healthgrades.com/hospita...ghborhood=&locType=|state|city&locIsSolrCity=

and here: http://www.hospitalsafetyscore.org/...ty=albany&state_prov=NY&hospital=&agree=agree