Stent graphs

[Marf]

As some of you might be aware from my previous posts....I made it in to surgery to repair an AAA. I took a poke in the spinal cord getting an epidural and the surgery was cancelled and I was hospitalized for 7 days with a tear in my dura and a painfull hip. I was going to have the traditional open method of repair.

In the beginning, my doctors gave me a choice of the traditional open method, or the endovascular stent graph. Pros and cons considered....I went with the traditional method.

The poke in the spine scared the crap outa me....and I have since changed my mind and asked for the stent. My doc did a 360 and denied ever offering me a stent.... claiming he wouldn't put a stent in someone affected with marfans. I know I wasn't imagining things...without a doubt he offered the stent. I approached the cardiac surgeon (top dog in this area) who did my aortic valve and asked for his opinion. He reviewed my mri and ct scans and said he couldn't see why I can't have a stent. He said he would dicuss my case with the surgeon who was to do the traditional repair (and trained under him). The top surgeon no longer does and vascular work but concentrates on cardiac stuff.

A few weeks went by....and I found out the original doctor dicussed my case and advocated for the stent on my behalf. The second doctor refused the procedure claiming he has reservations about it because of marfans.

I am now awaiting a third opinion to find out if I can have the stent. I wanted to ask all of you....have you, or do you know of anyone who has marfans who has had an endovascular stent graph installed? Does connective tissue disorders automatically eliminate a person from endo stents?

The way I see things....if I have a stent installed and it isn't sucessfull...I don't think i'm likely to suffer anything acute like dropping dead. They could simply revert to the traditional method. I sooo think I deserve a chance at having a wayyyyy less invasive surgery. Any info on marfs having endo stents is appreciated. I see the new surgeon on Dec 3, and i'd love to tell him I know of a dozen or so marfan affected people who have the stents.

[Marf]

Sorry for bumping this thread to the top....but my appointment with the newest vascular surgeon is tommorow.

My goal is to find anyone with marfans that has recieved a endovascular stent graph. (or know of anyone...or can post links suggesting the above)

Any and all help is sincerely appreciated.

[tesla77]

You must not live in the United States, otherwise you could opt for the stent option and easily find someone to do it. To be honest I am not sure if this is the best option if you have previously dissected. The dissection could work around the stent. But on the otherhand I dont think it could hurt.

This falls under the cant hurt might help catagory. Be persistent with you doctor and tell them you want this and are afraid of the open repair.

The concern has to be that the stent is not a permanant fix and I am assuming that you are still pretty young. You really might want to consider sucking it up and getting it fixed for real.

Good luck and let us know how everything goes.

[Marf]

Thanks Tesla77 for the reply.

Heres my problem:

I have one top notch surgeon who thinks I can have it. (but he himself no longer does these procedures but rather concentrates on cardiac transplants etc etc) He is well known and considered to be one of the very best cardiac surgeons in Canada.

I have another surgeon (who trained under the guy above) who has reservations about doing a stent graph on me because of my marfans. He claims the marfanoid aortic tissue may not be able to take the radial force or the metal clips assioated with the endo stent.

My own position.....I don't think i'm likely to suffer any acute problems having a stent. If they install it....and it isn't working like it should.....take it out and revert to the traditional open method. I have been researching stents to the best of my ability for several months. I have only heard of one single case where someone with marfans had one....and his circumstances dictated he was un-fit for the traditional method.

I'm 38 years old. I've already had an aortic valve replacement and ascending graph (8 years ago). I've got a small subclavian anyerism with a small discection that has been stable for many many months. Obviously now have a AAA in need of repair. Major problems with a tarlov cyst (dural ectasia) and currently seeking surgical options which is proving very difficult. I've had my upper and lower jaws advanced for sleep apnea. Few other minor surgeries on knees....etc etc..

To be honest, my first cardiac surgery really took the wind out of my sails. I feel like this AAA repair is the same if not worse. I've also got in my mind that the tissue valve I had put in won't last ....they told me to expect 8 years from it considering my lifestyle and age. Yep....I admit it...I'm simply scared to death of this surgery. I just keep searching....and hoping to catch a break somewheres.

[tesla77]

I am sure it is the small dissection that this other sergeon is worried about. I did some research myself on the subject and my conclusion is that the stent is not the best way to do this but it is certainly better than doing nothing. If you want to go with it than you should be allowd to do so. I hate the american health care system but the only bright spot about it ia that if you want it, then you can always find someone who will do it.

If the stent is properly placed it will provide a channel for blood flow so that even if the dissection ruptures you will still have time and opportunity to get the traditional repair. Its not a bad idea and it keeps you out of the hospital and living your life. The draw back is that the dissection could widen and you could be faced with having to replace a much larger section of your aorta down the road. What ever happens you are going to pull through it so have faith.

[Marf]

I have no dissection at the AAA site.

[Marf]

I just got back from the docs. Here's the scoop for anyone interested.

Mortality for AAA open repair is around 5%.
It's less initally for endo stents, but then pretty much evens out at around the two year mark.

Around 20% of people getting stents for AAA's develope problems within that first two year period.

If a serious problem developes, removing the stent can prove to be a very major problem and technically difficult for surgeons to do. Mortality here rises significantly.

The surgeon I seen today wants to pose the situation to collagues before giving me his final word. I suspect he will offer me the stent, but reccommend the traditional method.

I feel like I should flip a coin to decide. Making a decision like this on a life saving procedure isn't excately my idea of fun.

[Marf]

I have the reply from the other doctor already. For info....my Canadian doctor advised against the stent for aaa repair, but doubled checked with a vascular surgeon at John Hopkins.

This is what my doc e-mailed me tonight:

"I emailed my collegue about the stent graft. he advises against it
strongly. there have been some favourable reports of their use for AAA's
but there have been disasters as well. he treats a lot of marfan
patients and advised that an open surgery would be safer."


I contacted my original surgeon tonight and asked him to re-schedule me for traditional open method surgery to repair my AAA.

All I can say is "double wow"....I never ever counted on such difficult decisions to make. I almost wanted to flip a coin.

[npp33]

I think you're wise for going with the repair. You will do well.

[tesla77]

This is the right move. If the aneurysm were to dissect and spread the stent would not help, then open repair would be a real challenge. You are making the right move rest assured.

[Bek]

I just wanted to let you know that the traditional method is not nearly as bad as you might think. I just had a AAA repair done due to a dissection that ran the length of my aorta. Two years ago I had my ascending aorta replaced, and that surgery was alot tougher for me to recover from. I think that it's because my organs are all getting sufficient blood flow now, and that my heart is not having to work so hard that this recovery is going so smoothly. I wish you the best and my prayers will be with you.

Bek

[RoyBatter]

Hello everybody . I am 41 . I live in UE , went through numerous operations on the entire length of the aorta.
Today I feel very good and I am very happy man.In my case the doctors applied the stent graphs (zenit) with a very good result.
This operation was very complicated. Took place in 2004, and is called a hybrid.
I know that technological advances since then went to the very front, to reduce the problems of patients. Of course, the first upper section Aoty course, I had operated on the classical method
Unfortunately, like me are few. I hope that those few of the very few who managed to beat the disease in its most dangerous aspect will be more . Take care of yourself.

[RoyBatter]

Aneurisma Aorta Abdominal, Fenestrada. animación

http://www.youtube.com/watch?v=aXuEgsT2 ... re=related