Aorta up to 5cm

[Davidcv67]

Hi...havent talked to you all in a WHILE!!

I just found out my aortic measurement is at 5cm. Marfan related enlargement is benchmarked at 5 to operate. Hell of a op too. However doc said he will wait to 5.5 to do it. According to my calcs I am growing .5cm per 2 years.

This is the BIG one. Elephant trunk procedure. Wish me luck.

Dave

 

[Ross]

Dave is he completely nuts? Your in danger now, why push it?

 

[heartyone]

David,

Am with Ross here, why the heck wait? You are healthy now and feeling okay, what better time to tackle and fix this? You don't want to wait for a crisis, when your physical and mental energy may be low. It sounds as if surgery is inevitable, and it sure sounds good to be in control of the timing. My wife had an aortic root aneurysm (also marfan's related) that we did not know about and it dissected, causing damage into the arch and branches. All replaced now with nuts, bolts, dacron and valves. Trust me, you don't want to go into the surgery on an emergency basis or even on the basis of "I don't feel as good as I used to." You will recovery much better if you go into it strong. And, yes, you are right, it isn't nice surgery, don't know of a surgery that it. But, they all beat the alternative!! We are lucky to live when we do.

 

[Tom F.]

I have checked a couple of medical web site about Marfans, and from what I read the indication for surgery is between 4.5 and 4.7. You are beyond that, and I agree with the others, you should get it fixed.

 

[RickKiem]

I agree also. My anuerysm was non-marfans and we did surgery to repair it a 5.0. My cardio was thinking 5.5 but my surgeon felt much different. I also remember reading that in patients with Marfan's the risk ws higher and surgery was indicated at 4.5cm or higher. I think I read this in several places and you might check the Texas Heart Institute web site and the Mayo Clinic web site. If I remember they both had some good info on them. Also Cleavland Clinic.

Good luck with all of this. Remember that we must be proactive in our healthcare and I would strongly recommend a second opinion and seek out an opinion from your surgeon.

Happy Holidays and here is hoping for a great New Year.

Rick

 

[Davidcv67]

Yes it was the Texas (Doctor Coselli) to wait to 5.5. I just do not want to stop life now. I came really close to dying on the last surgery that was supposed to be a lot more routine. Going into this one I just have a bad feeling.

I believe it is a Risk vs. Benefit scenario. This is such a complicated surgery that they are not pushing it.

I also have been thinking of trying to retire on disability...not because I don't want to work but because the stresss my job creates with me.....I am NOT whining about my job & stress...I LIKE to work and have been since I was very young BUT, I'm sure the stress is not helping my BP, and the high BP just stretchs my aorta more....(Marfans is a connective tissue disorder and similar to a rubber band that won't snap back. That is why a lot of Marfaniods get aneurysms.)

Does anyone have any experience on the legalities of Long Term Disability offered by employers? Specifically can they just terminate me if I am on it for a LONG time? If I can take a downgrade to a less stressful position in the same company I want to do that but I don't believe they have any positions....and I have to work!!

Dave

 

[Nancy]

I don't know about your employer's long term disability, but if you are going to go for SS disability, the wait is about 2 years and at least a couple of appeals, even with an attorney. Once you get it, the payments are retroactive, but it still is not an easy thing to do. Gather all your records and have all your doctors in your corner, because they do contact ALL of them eventually.

Joe was told that he would never get it because he "looked" too good. Forget about what was going on inside. He didn't have neck braces and a cane or walker. But, he was imminently qualified. They said that he could probably sit and take tickets somewhere (he was a corporate manager). It wasn't until I pointed out that his stamina was very low, and he'd probably fall or pass out if he stood or sat for too long doing any one thing, that he got it. He also needed corroboration from all of his docs.

He was on it for quite a while, and now is fully retired.

So plan on having quite a fight.