newbie...recently diagnosed aortic aneurysm

[harleygirl528]

I was just diagnosed with an aortic root aneurysm as in incidental finding. I fractured my spine and was having an MRI of the spine a couple of weeks ago when they discovered the aneurysm. I was immediately referred to a cardiothoracic surgeon who did an additional CT Scan and Echo...and determined that the aneurysm is on the aortic root and is currently about 4.8 cm...he is not qualified to do the procedure so is referring me out. I have only mild aortic insufficiency and not sure if my valve is bicuspid or tricuspid...they will probably replace the valve as well though not sure.
I found out today that Tricare (my husband is active duty military and this is our insurance) participates with The Cleveland Clinic and was hoping to be evaluated and treated there. Anyone have any experience with this institution? I hear they are very highly rated in this area.
I am totally freaking out...I am only 41 years old and have 3 children at home still...I look at it this way though...if it was my time then I never would have found out about it and I would have just been gone...it must not be my time because I found out in time to do something about it.
Very worried about the surgery itself...my cardio at Madigan said it will take 7-8 hrs and will involve deep hypothermic arrest? Lots of scary terms...will be on ventilatory when I get out of surgery...stuff that I really don't want to think about. This is my first time on this post so please...any advice or words or widsom would be greatly appreciated...looks like I will be having surgery very soon due to the size of the aneurysm.
Thanks in advance!

 

[PJmomrunner]

Harleygirl, welcome! You are not longer even the teensiest bit alone. So many on VR.com have gone where you are about to go. (And some of us are hanging back and letting you go first! ) Many have gone to Cleveland Clinic and I'm sure they'll respond if they see your post.

 

[Ross]

The Cleveland Clinic is the #1 heart surgery hospital in the United States. You can not find better. Mayo is a close 2nd.

Don't worry yourself over what they do during surgery. Take it from me, worry about that aneurysm being there and get it fixed as soon as possible. Mine ruptured around the size yours is now and I should not be alive today to type this warning to you, but I am!

 

[kbheart]

participates with The Cleveland Clinic and was hoping to be evaluated and treated there. Anyone have any experience with this institution? I hear they are very highly rated in this area.
I am totally freaking out...I am only 41 years old and have 3 children at home still...I look at it this way though...if it was my time then I never would have found out about it and I would have just been gone...it must not be my time because I found out in time to do something about it.
Very worried about the surgery itself...my cardio at Madigan said it will take 7-8 hrs and will involve deep hypothermic arrest? Lots of scary terms...will be on ventilatory when I get out of surgery...stuff that I really don't want to think about. This is my first time on this post so please...any advice or words or widsom would be greatly appreciated...looks like I will be having surgery very soon due to the size of the aneurysm.
Thanks in advance!

I had my surgery at the Cleveland clinic one year ago. They were great! It seems scary but it wasn't nearly as bad as I thought it would be. They replaced the ascending aorta and the aortic valve. Make sure they see how fast the aneurysm is growing. Mine grew very quickly since I had 2 dissections. My local cardiologist missed the dissections and said it would probably be years before I needed surgery but it was only 2 weeks. If you have chest pain or are short of breath, get to a hospital quickly. I wish you the best!

 

[Adrienne]

Fracturing one's spine is usually not a good thing, but in your case it is like a Godsend. Just think - it permitted you to be able to take care of this thing before it is too late! Good luck!

 

[Phyllis]

So glad you found us and you will hear from many soon who will extol Cleveland Clinic- they are the best. Stay with us and let us help you over this mountain. As you will see, it's not as bad as you first imagine and knowledge is empowerment.

 

[harleygirl528]

Thanks so much to everyone for your incredible words of encouragment and support. It honestly brings tears to my eyes just to know that there are others out there than know what I am going through and have come out ahead on the other end. To say that I am scared is an absolute understatement! I am having so many issues with my insurance right now and getting sent to the right doctors etc...turns out I will literally have to move to the Cleveland area, get assigned a new Primary care doctor who will then refer me to the Cleveland Clinic. My husband is active duty military so they are used to these kinds of changes...doesn't have to be permanent...I can come back to Seattle after appropriate recovery, etc. I haven't thought it through completely but it seems like I need to make a decision fast... Right now I am working on compiling all my medical records to forward to The Cleveland Clinic for evaluation. I just can't get over this overwhelming feeling that I am walking around with a time bomb ticking in my chest, you know? I'm having a hard time sleeping and can't seem to think of anything else. I know I should be embracing life and enjoying all the little things but this thing has completely overwhelmed my life right now! Thanks again to all of you....I will definitely stay connected as I am sure as I move through this process the resources available here will continue to benefit me immensely!
Lorie
P.S. How do I add a signature line and picture?

 

[Mary]

Welcome, Harley.
It's good that you're here, but we all wish we could have met under different circumstances.
I think you're fortunate that Tricare uses Cleveland Clinic as a provider. It is probably the best you could get, so that is a blessing.
We're here to answer any questions or to be a sounding board if, and when, you want to vent.

 

[shellyb]

My husband had his aortic valve replaced on Oct. 3rd at the Cleveland Clinic. We were very impressed with the surgeon and the facility. It's huge! LOL We live in SD so we flew. My husband was able to fly home 6 days after having his surgery and didn't have any problems. We figured if you're going to have to have heart surgery go to the place that's #1.

shellyb

 

[ALCapshaw2]

Greetings Harley,

There's no question that the Cleveland Clinic is a "Best of the Best" kind of place, BUT, while you are 'getting your ducks in a row' it may behoove you to look around locally to see if you can find the Best Aortic Aneurism Surgeon(s) in Washington, 'just in case' you need to go ASAP. Some of our members have received Valve Replacements at the University of Washington. (Johnny Stephens received 2 there)

After receiving a different valve than my surgeon and I had agreed to originally, I have come to the conclusion that it is ALWAYS a good idea to have a "Plan B", just in case something unexpected crops up.

'AL Capshaw'

 

[WayneGM]

Welcome to the VR community, Lorie. Sorry for the circumstances, but glad you found us. We'll help you through this. Lots of information, advice, support, commaraderie, and inspiration here, that's for sure. I was feeling perfectly fine when my doc determined I needed OHS during my annual check-up. I was worried too as I'd never been seriously sick or injured a day in my life. It was scary but ultimately it wasn't as bad as I thought it would be. Even the hospital stay was better than what I expected (except the food....that was pretty much as bland as I expected).

BTW, I see from your profile you ride a Heritage.....me too!!! There's a few Riders around here.

Cheers!

 

[swim mom]

Do remember there are also very good surgeons in the Seattle area, in fact several of our members have had their surgery in Seattle and Tacoma. It may be less stressful for all of you if you have the support of having the surgery near home. My husband is also active duty and one thing I have learned navigating the system is unless your surgeons are completely in agreement you can get tricare to allow 3 opinions without problems according to our tricare office. You can also get a lot more "exceptions" approved than you think especially if you are calm and firm but in a nice way. My husband keeps trying to remind me you get alot further being nice but firm.

 

[aussigal]

Welcome to our family...

So many of us have been through the same worrying & sleepless stage you are now in...I personally recommend going to see your Doc and asking about something for the anxiety , maybe Valium or similar...I found this to be a HUGE help for a couple of weeks while I adjusted mentally to all that was about to happen to me. It really helped me stay relatively calm and capable while I attended to pre-surgery appointments and all the other stuff I needed/wanted to do before the OP.

anyway...call on us for any questions no matter how silly or obvious you think they are...there is someone here 24/7.

 

[harleygirl528]

Thanks to all for the continued words of support and encouragement. I agree, there are probably good resources here in the Seattle area but getting the appropriate referrals has been challenging! My initial reaction was try for the best...The Cleveland Clinic...but the logistics may be just too much. I am sure I would be reassured if I could only find someone here locally that has experience with the aortic root reconstruction...it makes the procedure more complex than a typical aortic root aneurysm because of the location...a couple of names that have been given to me are Dr. Verrier and Dr. Aldea at Univ of Washington...I have the referring cardiologist on my side and he will be contacting Tricare himself and speaking directly with the medical director to make sure they get me where I need to be soon...because of the size if my aneurysm (4.8 cm) it looks like it needs to be soon...at the very least I want to consult with a local surgeon "just in case" and still consider The Cleveland Clinic. At any rate, I am plugging along and since I just got the formal diagnosis on 10/19 (seems like months ago but it was only 6 days ago!) I guess I am doing okay. Thanks again for all the support...I don't feel so alone anymore! No matter how much someone tries to understand unless they have been through something like this it really isn't the same.
You guys are awesome and I can't until I am on the other side giving advice and reassuring others!

 

[ALCapshaw2]

It sounds like you are doing all the right things and on the right track Lorie.

You are absolutely right: If you haven't been there, you just don't get it. We hear that all the time. That's what makes VR.com such a GREAT place for advice and support.

You know where to find us when you need us.

'AL Capshaw'

 

[Cooker]

Harleygirl.....I want to welcome you to vr.com. You have come to the right place for information and support. Wishing you the best.

 

[Tom F.]

I was 49 when I learned that I had the exect same aneurysm as you, at 4.8. One thing I would suggest that you investigate is the possibility of a valve sparing procedure. If your aortic valve is normal they may be able to replace the diseased portion of the aorta but allow you to keep your valve. It is referred to as a "David type" valve sparing procedure. It is what I had done in 2002, and everything is holding up find. They will do them at Cleveland, they also do then at Cedars in Los Angeles. If you google the term you will find that there is a great deal of published information on the net. Good luck.

 

[harleygirl528]

aortic root aneurysm

aortic root aneurysm

Tom: Thanks so much for your reply...it is good to hear from someone who went through the same thing. Unfortunately, I already know my aortic valve will probably need to be replaced since I was diagnosed with aortic regurgitation about 7 years ago. It is mild, however, if they are in there I think their philosophy will be to go ahead and replace it. I am familiar with the valve sparing technique and will be sure to ask my surgeon about that. How soon after you were diagnosed did you actually go in for the surgery? I am expecting to be operated on soon due to the size but I have heard of others waiting until it is even bigger. I am not very comfortable waiting, however, since the stress of feeling like I have a ticking time bomb in my chest is driving me absolutely crazy! The only thing I can do is continue to research and hear from wonderful people who have been through this and can share their experiences with me!

 

[Tom F.]

A good and very young doctor heard my aortic valve leak, which led to a bunch of tests. By August of 2002 I knew I had a problem. I did a lot of research and doctor shopping, probably for too long. Surgery was 20December 2002. Relatively speaking, an uneventful surgery.

Please consider this. In my case my aneurysm, which is an expansion of the aorta, caused my aortic valve to pull apart, or open up if you will. It was the aneurysm that caused the regurgitation by causing the valve to be spread beyond the normal size of the valve. My valve was not bicuspid. So they cleaned up the aorta, and sewed my own valve into a properly sized dacron replacement. By pulling the valve back to its normal size the regurgitation largely ceased. The test for you will be whether the valve is calcified or bicuspid, in which case a repair is unlikely. But if the valve is otherwise normal they may be able to pull it together inside the dacron, fix the regurgitation, and leave you with your own valve.

 

[harleygirl528]

aortic root aneurysm

aortic root aneurysm

Wow, basically that would mean that I have had this aneuryms brewing potentially for years causing the leak...the leak is still pretty mild even on my last echo which was just last week so that would be an incredible stroke of good fortune if I could keep my valve and not have to go on Coumadin. Thanks so much for suggesting that...it is encouraging to think that maybe I won't need the valve replaced...of course you never know until you get in there I guess, but at any rate it is something to bring up with my doctor. By the way, what criteria did you use while you were doctor shopping? I noticed in your picture that you have a navy uniform on? My husband is active duty navy and we are forced to work within the confines of the Tricare healthcare system...which can be somewhat limiting at times....I could, of course, temporarily move to Cleveland because the Cleveland Clinic does participate with Tricare...
Thanks again for your input...it is much appreciated!