Info on aneurysm repair

[hoodie978]

Hello,

I came across your web page when searching for information regarding aortic aneurysm repair. My boyfriend is 37 and has a history of congenital aortic stenosis and had a mechanical valve, St Judes, replacement 15 years ago. He has been asymptomatic and went in for a routine cardiology check up. A CTA was ordered due to some dilation noted on the ECHO. His aorta was noted at 5.5 cm and warranted a referral to a surgeon.
The general consensus from the surgeons, we got a second opinion, is for the Bentall procedure, with buttons for the coronary artery grafts. The operation is thought to last 6-12 hours and has increased risks because of his previous open heart surgery.
They agree that is needs to be done now. Here is the catch, he had an ECHO done 4 years ago that showed the dilation to measure 5.7. If there had been no growth in 4 years, does that change the situation? Does the fact that is has been stable for four years change anything? Is his situation so rare, 37 on open heart number 2, unseen? Would it be in our best interest to go to a specialized research center, or stay local?
It is my understanding that the operation itself, a standstill, is a rarity. I just want to make sure that all avenues are exhausted before a decision is made.
Jon is 6'6", normal weight, otherwise good health, on Atenolol and Coumadin. His family history includes an Aunt with an aortic valve replacement and a Grandfather that died from a ruptured aortic aneurysm.

Any advice would be much appreciated.
Jodie White

 

[Tom F.]

Hoodie - Cedars in LA is a noted and respected heart center hospital, he should try there.

Yes, second surgeries do carry a bit more risk, but he has to get it done. I am sure he will be fine.

 

[Arlyss]

Hi Jodie,

Since Tom has mentioned Cedars-Sinai, here is a link to the program there.

www.cedars-sinai.edu/aorta

Dr. Sharo Raissi is the aortic surgeon there.

Arlyss

 

[Arlyss]

Hi Jodie,

I wanted to respond to some of your points regarding your boyfriend:

1) There is another option that is possible in some people - rather than the Bentall with buttons, the root may be remodeled. My husband has this - it is done only by surgeons who have developed expertise in this approach. My husband also had a mechanical valve first. That mechanical was later replaced, but the "remodeling" stayed in tact. The advantage is that the blood supply to the heart muscle - the coronary arteries - are not disturbed.

2) Up to 12 hours sounds very long to me - perhaps the surgeons quoting these times do not do these surgeries routinely? Generally with practice, surgery times decrease.

3) There is some increased risk in a second surgery, especially with an aortic aneurysm. One thing they should know is if the aneurysm is very close to the sternum - if the surgeon does not know what to do in that situation, it is possible to cut into the aorta, not something that should happen. There is a way to avoid this.

4) No, this situation is not that rare amongst bicuspids. It may be rare in the typcial surgical center that does primarily bypass and valve replacement surgeries.

5) The echo that said 5.7 cm four years ago may not be accurate. Images from echos just are not as clear.
A CT scan has much sharper detail and if measured properly by the reader will be accurate.

Your boy friend needs a comprehensive consultation with a surgeon specializing in aortic surgery.

Best wishes in your search for help,
Arlyss

 

[Arlyss]

Hi Jodie,

I responded on another thread but will repeat it here also. Regarding your boyfriend:

1) There is another option that is possible in some people - rather than the Bentall with buttons, the root may be remodeled. My husband has this - it is done only by surgeons who have developed expertise in this approach. My husband also had a mechanical valve first. That mechanical was later replaced, but the "remodeling" stayed in tact. The advantage is that arteries that supply the heart itself - the coronary arteries - are not disturbed. If a Bentall is absolutely required of course it would be done.

2) Up to 12 hours sounds very long to me - perhaps the surgeons quoting these times do not do these surgeries routinely? Generally with practice, surgery times decrease.

3) There is some increased risk in a second surgery, especially with an aortic aneurysm. One thing they should know is if the aneurysm is very close to the sternum - if the surgeon does not know what to do in that situation, it is possible to cut into the aorta, not something that should happen. There is a way to avoid this.

4) No, this situation is not that rare amongst bicuspids. It may be rare in the typcial surgical center that does primarily bypass and valve replacement surgeries.

5) The echo that said 5.7 cm four years ago may not be accurate. Images from echos just are not as clear.
A CT scan has much sharper detail and if measured properly by the reader will be accurate.

Your boy friend needs a comprehensive consultation with a surgeon specializing in aortic surgery. At Cedars-Sinai that is Dr. Sharo Raissi, here is the link to the program there:

www.cedars-sinai.edu/aorta

Best wishes,
Arlyss

 

[ALCapshaw2]

Do a SEARCH on VR.com for Dr. Raissi and Dr. Craig Miller. They have each performed successful surgery of the Aorta on our members recently and are Highly Rated for this type of surgery.

Dr. Raissi operated on "HarleyGirl###". Very Long and thorough thread.
I've forgotten the name of the member that went to Dr. Miller but it should show up in the Search for Dr. Miller. Dr. Miller operates at Stanford.

The Common Theme in high risk surgeries is to find the Most Experienced Surgeon for the procedure YOU (or your BF) need. If they need to use 'total circulatory arrest' (I'm missing another adjective there), you want a VERY EXPERIENCED team doing the surgery! Ask for "number of procedures performed" in selecting a surgeon.

'AL Capshaw'

 

[Duff Man]

and a Grandfather that died from a ruptured aortic aneurysm.

Any advice would be much appreciated.
Jodie White

Get it done soon. A family history of rupture is serious, and so is 5.7 cm.

 

[pamela]

The 6 1/2 hour time frame may include all of the associated surgical procedures that go along with OHS: anesthesia including IV, neck cath, and wrist cath; sternotomy; and other perfussionist work for the bypass machine. Then you need to consider the post valve and graft sugery rewarming, restarting and closure. The surgeons make all effort to perform the actual sewing of the prosthetics as quickly as possible to keep that pump time and super cooled time short.

It's a big deal, isn't it?

Take Heart, the surgeons will do all they can, as best as they can, it's the standard anyone with god-like powers must hold themselves to.

Pamela.

 

[Susan BAV]

Welcome, Jodie.

I haven't read each reply--and probably should before I post this but I'm running short on time--but you mentioned in your post that your boyfriend is 6'6"? Has he ever been diagnosed with Marfans? If so, that may thicken the plot.

Hoping all goes well for him. Take care and best wishes.

 

[hoodie978]

Thank you...from Stanford.

Thank you...from Stanford.

Thank you all so much for the helpful information.

We have all of the steps in order to get the case sent to Dr Craig Millers office at Stanford. Honestly, if it hadnt been for your advice and seeing all of the recovered patients on this forum I cant say we would have sought a higher level of care.

And no Jon doesnt have Marfan Syndrome.

I will keep reading on this site and keep it updated with new information.

~Jodie and Jon~

 

[hoodie978]

By the way...

By the way...

Dr Miller is WONDERFUL and we havent met him yet. I emailed him through the Stanford website, when he office said he was out of the office, but he emailed me back within hours. His office has already been in contact with me as well.

Talk about reassuring.

 

[Leah]

Dr. Raissi operated on "HarleyGirl###". Very Long and thorough thread.
I've forgotten the name of the member that went to Dr. Miller but it should show up in the Search for Dr. Miller. Dr. Miller operates at Stanford.

TomD and Taylor both went to Dr. Craig Miller. They both have been very willing to share their experience, which in both cases was very positive. I have consulted with him as well and am seriously considering him for aortic valve surgery early this fall (but I do not, apparently, have aneurysms or aorta enlargement and may go more local).

 

[DeWayne]

Just remember that the aneurysm in the most serious problem here. You want someone that is an expert in this area. Lots of surgeons can do valve replacements but not all of them would be considered experts at aortic grafting. You want someone that has done a BUNCH of these.
Your boyfriend should have been told not to lift anything over 10# until he has the operation as well. At least that was what they told me when they found my 5.8 cm aneurysm.

I had a 2nd surgery at at 52, for me it was really no big deal, well it was and it wasn't. Of course anything this major is a big deal, but just know that without it death is gonna come knocking at any time. Life will return to pretty much a normal routine, it just takes a few months after surgery for that to happen. there are hundreds of us on this site that have gone through similar stuff so anything you want to know just ask and we will try to help you.

 

[CThrock]

Welcome Jodie, so glad you found us.. I had my OHS at Stanford but I had Dr. Oyer because Dr. Miller was on vacation. But the whole team there is the greatest ever.. They make you feel so good about what they are doing and so experienced. I could'nt of asked for a better place to have my surgery. I had to travel for two days but it was worth it. Tell your boyfriend he is in great hands..
Keep us updated on how he's doing and when the surgery would be done...

 

[Arlyss]

I began searching for information regarding aortic aneurysm in the chest in early 2001, particularly any association with bicuspid aortic valves. At that time it was very difficult to find very much. Now a number of centers offering information and treatment options come up via internet search. It is encouraging to see this increased focus on thoracic aortic disease. Doing a search such as "thoracic aortic center" brings up a number of listings.

Here is the link to Stanford's information, a center mentioned in this thread.

http://www.stanfordhospital.com/cli...artSurgery/cardiacSurgeryThoracicAortic2.html

Best wishes,
Arlyss

 

[hoodie978]

well...

well...

its all set up for the specialized CT and the first surgical appointment at Stanford with Dr. Miller. We go Monday afternoon for both. As it turns out they think his aneurysm is a 6.2 not a 5.5.

Keep us in your thoughts and prayers...

 

[Phoenix]

Good luck to us all, I am in a similar boat.

Good luck to us all, I am in a similar boat.

Hi you guys, I also have an aneurysm of the ascending aorta (5.1) with a st judes valve put in 11 years ago. My surgery is scheduled for the 29 th this month at the Brigham and women's hospital in Boston with D. Ralph Bolman. here is whats happening with me. maybe it will be helpful to you. I had no problems with my valve for all this time. I had a slight numbing of the left side of my face ( a TIA) for a very short time. and checked it out. A 4.5 aneurysm was discovered by the echo which is not that accurate leading to a CT scan with contrast that measured the 5.1. Nothing has been found through MRIs of the brain etc. to indicate a stroke. even though I was freaked out by the thought of going into surgery again I consider my self very lucky that they found the aneurysm before it burst or disected . at 5.7 to 6.2 I doubt there will be any question that you will need sugery. I have been told not to lift any thing or put added or dissected. I was about to go climbing in S.America. It might have been my last trip. At 5cm they recommend not puttingpressure on my heart in the weeks to come. Walking even mild aerobics does not add pressure, and it is important to be healthy before your surgery, but quite frankly I feel like a bubble that may bursts at any moment and am taking it easy. At first I was very depressed. This is normal. With very step I take to stay on top this I feel calmer. You have to be your own advocate. I had a bicuspid valve. which is why they replaced it with the st. judes. Bolman said that they have found that this tends to increase the risk of aneurysm and with what they know now they would have replaced my aorta (which measured 4.5) at the time of my valve surgery 11 years ago. Such is life. Because you have a mechanical valve you will have to get off the cumadin before the surgery. They will either stop your dose and bring you in a day or two early , put you on heperin and do the Cath, or as in my case, because I had a possible stroke, stop th cumadin "bridge"you on lovonox. You have to inject your self in the stomach twice a day, but it is a small needle, and you get used to it. It is a great party trick. Just to make life even more interesting you will have to cleared for the surgery by a dentist to make sure you have no active infections which might compromise the surgery. I had not taken this seriously and discovered that i have two teeth in the rear of my mouth that will have to be extracted before the surgery. One of them might be able to be saved but could be a problem. you cannot have any dental work for six months after OHS. I'm going to pull them and have a bridge put in at a later date. I am also timing the dental work so I can start on the lovonx for that and stay on it until I enter the hospital. The good news for me is that Bolman thinks my aortic root looks good and thy will only have to replace the Aorta with a Dacron tube. I asked for spandex. Which got laugh out of him. You want your doctor to like you. The most important thing I have learned is that you have to keep a positive attitude stay on top of things, learn as much as you can and make sure nothing falls through the cracks. Even with the best of doctors there is no one who cars about you as much as you do. But even though I have done my research I tell every one to assume I know nothing. I want to keep them thinking about what the options are and making sure that there are clear well thought out reasons for everything that is done to me but do not want to push them in the wrong direction because of some thing I "think" i know. I am putting my life in the hands of some one I trust because of his knowledge and skill. It is the bureaucracy that you have to watch out for. for example they were originally going to have me stop my cumadin two days before i went in. It was only After I talked with my neurologist and my cardiologist that I call Bolmans assistant and brought up the question of stroke risk. She said " that is an excellent question" and called back within an hour telling me that they would bridge me on the lovnox She ended the call saying "good move". As my father once told me " luck favors the prepared." Good luck to you.keep posting and let us all know how it is going.

 

[DeWayne]

I should mention that my valve replacement and aortic graft was my 2nd open heart surgery. They told my wife 4 hours or so for the operation, it ended up taking 8.