dilated ascending aorta at 4.2cm...

[Gail in Ca]

to taranjit

to taranjit

to answer your ? My surgeon was Dr. Miller at Stanford Hospital.
My cardiologist is at the palo alto clinic, Dr Gradman.
the person reading my echo at washington hospital didn't even see the aneurysm, but I brought the tape to my cardio and he saw it right away.
My aneurysm was at 6 when discovered.
I guess they knew it was tissue problems because the pathology report on the aorta showed granulomatous aortitis.
they determined that i didn't have marfans, but sent me to rheumatologist for many blood tests which didn't ever pinpoint anything.
My surgeon recently told me lifting small amount on the machines is okay but not to do any isometric type lifting, no holding.
Gail

 

[Arlyss]

BAV Disease and the Aorta

BAV Disease and the Aorta

Perhaps sharing some references from the medical literature would be helpful.

Regarding what happens to BAVs following valve replacement:
1) A study of 50 BAV patients who had their valves replaced (compared with 50 "normal" or tricuspid aortic valve patients who also had AVR) between 1975 and 1985 was done by a group in Milan, Italy. They followed what happened to them through 2001. This is what happened to the BAVs:

3 had operations for enlarged ascending aortas
5 died of sudden aortic dissection
7 died suddenly; an autopsy was not done, but this is suspicious of aortic dissection or rupture
The size of the aortas of the BAV survivors was significantly larger than those of the tricuspids (4.84 cm compared to 3.68 cm). Only time will tell how long they may safely avoid aortic surgery.

A group from Osaka, Japan, published in Circulation, Sept 9,2003, a paper titled :"Failure to prevent progressive dilation of ascending aorta by aortic valve replacement in patients with bicuspid aortic valve: comparison with tricuspid aortic valve." Here is their conclusion: "CONCLUSIONS: AVR could not prevent progressive aortic dilation in BAV. Since the aorta did not dilate in TAV, progressive aortic dilation in BAV seems mainly due to the fragility of the aortic wall rather than hemodynamic factors."

I have not found anything in the medical literature indicating that the aorta decreases in size after replacement of a bicuspid aortic valve. If anyone told me that, I would ask them what evidence they base it on.

There is a paper from the U of Toronto that gives a good general overview of both the valve and the aorta and what may cause the aorta to enlarge. The entire article is available on the web. Here is the link
http://circ.ahajournals.org/cgi/content/full/106/8/900?eaf

There is nothing such as a blood test for this condition today; hopefully some day there will be. In the mean time, at least there are better diagnostic tests, more information, and better medical and surgical approaches than ever before!

My husband's BAV story is on the aneurysm support web site. Here is the link

http://www.westga.edu/~wmaples/velebir_arlys.html

Best wishes to everyone in your search for information and help....

Arlyss

 

[hensylee]

I just found out that my female cousin who is one month younger than me has an aortic aneurysm. The doctor is watching it. Three or four yrs ago she had bypass, valve replacement, and has a pacemaker. Now this.

 

[SJJ]

Arlyss,
I've just finished reading the article you wrote regarding your husband's medical experiences. Thank you, so much, for pointing us in that direction. The article was very informative, beautifully written and will serve to educate and inspire any who read it. I wish you and your husband well.
Sue

 

[Granbonny]

Ann

Ann

Which valve did your cousin have replaced? These aneurysms are really scary..I heard if you ever have one..You may have another one to pop up? Yikes..True, with brother-in-law. had one in his stomach..size 11...Did great with removal.. then 1 1/2 years later. had one to dissect in heart. Grew so fast, his doctors never saw it....And to think, there is no test to see them... Daddy has one in his stomach..No pain, no nothing....Can not remove because of his age... We don't even bother to take him to see how much it has grown...Age 90.. Don't want him to think about it..He's so active..Bonnie

 

[bvdr]

What Bonnie said reminded me that I had wanted to ask those of you who have had aortic aneurysms if your aneurysms extended or included the abdominal portion of your aorta. The reason I ask is that about twenty years or so ago AAA (abdominal aortic aneurysm) patients always spent at least a few days post-op in the surgical intensive care I nursed in. It was before the time that our hospital did any heart surgeries. I was wondering the other day if the thoracic surgeons ever ran into ones that actually exceeded their scope of expertise.

 

[Granbonny]

Arrlyss

Arrlyss

I just finished reading your Hubby's BAV story on the aneurysm Support site that you posted.... My Maid of Honor in my wedding died of a brain aneurysm the age of 40... Single and a Senior Flight Attendant for Delta airlines. she was my daughter's God-Mother.. Many years ago...I met Dr. Michael DeBakely at my Aunt's house..in 1959...In Galveston, Texas...She had a week-end home on the Bay. She introduced me to him.. I was age..19..Had NO idea who he was....and to think, all his research at the time..SAVED my life...Last time I posted this tidbit..was told that he was still living..Must be in his 90's..AS MUCH..as I HATE MRI'S..now may think about asking for one..Maybe in next 5 years...Those little stinkers can really pop up...and NO test will show them... Mine was found after 3 months of many doctor's trying to find out why I was burping? ENT, Gastro Man, Pcp and finally Cardio..because of a high top b/p reading. Lower side was normal...then Cat scan, Mri, cath..and bam..surgery in 3 days..Thank you, Lord. ..and Mama..because the burping came on after her sudden death...or, I would have never known I had one..size 5...Bonnie

 

[hensylee]

Bonnie - I don't know where the aneurysm is. When she had her first cath, they punctured the aorta, causing her near death but immediate emergency surgery that saved her. Guess that's how she got the first valve. She actually felt the puncture! I told her she could sue but she was just too tired and sick to do anything but plod on with her life. She's tired all the time now.

 

[bethanne]

arlyss --
thank you for your post. The information presented is well written and very informative. I also read your husband's story on the other site and was curious about the article you mentioned by Dr. Burks. I was not able to find it and wondered if you knew of a link for the article.

My appointment with my cardio is in the morning, I appreciate everyone's post and information. Once again I feel very fortunate to have identified this issue with the benefit of having one surgery versus two.

I have read other's post about having the aortic root replaced at the time of AVR but did not even put the two together as going hand in hand. I was certainly in denial that this was something I should be concerned about or look into.

With my original cardio, I had a sense that the tech was seeing something that was not translated in my reports.

I am debating whether to call my first cardio to communicate what was found by the second opinion cardio. I feel obligated to bring this to his attention that he missed this (or he may not have missed it he just didn't tell me...) in hopes of helping out other patients.

 

[Arlyss]

More Re. BAVs and Aneurysms....

More Re. BAVs and Aneurysms....

Bethanne, the abstract of the paper by Dr. John Burks can be found at
http://www.clinicalcardiology.org/briefs/9806briefs/cc21-439.html You could try a medical library or else write to Dr. Burks to get a copy of the entire paper. This paper provides some insight into why some cardiologists may not be aware of the BAV/aneurysm/dissection relationship. Here is a quote from Dr. Burks' paper:
"Regular echocardiographic surveillance of the ascending aorta is a standard recommendation for patients with the Marfan syndrome. However, despite the finding of BAV as often as the Marfan syndrome among patients with dissection, standard cardiology and echocardiography textbooks make no recommendation for periodic echocardiographic examination of the aortic root among patients with BAV. We report here two cases of severe, life-threatening aortic disease in young men with BAV. Based upon a review of the literature, we suggest that regular echocardiographic surveillance of the ascending aorta is indicated for patients with BAV."

I should also mention a little more about the recommendation from the group in Milan. At the time the BAVs were replaced in those people, there was nothing to indicate that their aorta might be diseased. Time revealed that in fact there was a problem with their aortas. Now that this is understood, this group recommends that the ascending aorta be replaced when the BAV is replaced. I believe a paper was presented at the American Association for Thoracic Surgeons last month in Toronto that makes a similar recommendation. Aortic surgery is much safer than it was even 10 years ago, and in the hands of an aortic specialist, dealing with the aorta protects from the risk of sudden aortic dissection or rupture.

It is difficult to compare one?s own situation with others because everyone has indiviudal risk factors. However, if I had a BAV, assuming that I have no other medical conditions or concerns that increase the risk to me, I would have my ascending aorta replaced when my valve was replaced, even if it appeared normal or was only slightly dilated at the time. I would do this to avoid the risk of aortic dissection or rupture, and also to try to avoid additional surgery later. I would do this because no one can tell me what might happen to me if I were to dissect or rupture. I would be very careful about whose hands did my surgery.

Anne, I am so sorry to hear about your cousin.

Bonnie, you were very very fortunate! Imagine that you actually met Dr. de Bakey! He is one of my heros because of his discovery of Dacron!

Betty,
Sometimes the aneurysm begins in the chest, in the descending aorta, and extends down into the abdomen. They call them thoracoabdominal, and the cardiothoracic surgeons handle those.

I hope this information is helpful to everyone.....there was so little out there just three years ago when my husband's aneurysm was diagnosed. For anyone wanting to read about bicuspid aortic disease this link may help
http://www.cedars-sinai.edu/bicuspid There is a link to some Frequently Asked Questions there that may also be interesting.

Best Wishes,
Arlyss

 

[bethanne]

hi y'all,
I just wanted to give an update after my appointment with cardio last week.
We talked about how there are several schools of thought out there. One, an older view, claims the dilated aorta is caused by the bi-cuspid valve. The other view, claiming a "connective tissue disorder" where the enlarged aortic root and the BAV go hand in hand, thus is known as Bicuspid Aortic Valve disease is what makes sense to me and fortunately my dr. supports this view as well. She agreed that the decision for surgery varies between doctors and even within St. Lukes there are differences of opinion. The bottom line is they would not recommend surgery under 5cm. When I cited to the dr. the numbers provided by cedars sinai she agreed that they had a more aggressive approach.

Sense the blood pressure med (calcium channel blocker) is helping to lower my Aortic Regurgitation as compared from the previous echo in February, she is recommending to wait and come back in 6 months for a TEE. She believes the slighly enlarged left ventricle and other subtle changes are a result of the high blood pressure that I had for at least 6 months before I was put on the calcium channel blocker from previous doctor. With the new meds, she is hoping that the progression can be slowed down.

This is a hard place to be... I have to agree with Bill at some point I have to say that I trust my dr.'s opinion however, it is with concerns because other's such as ross have not benefited from the waiting game.

At this time, I have a peace about waiting (hopefully it is not just about putting off surgery a while longer) but actually a peace that things will be okay for now.

Hopefully, I am understanding what she said. However, I have been on this statin, Lipitor since mid-April and I feel like I am losing my mind. After reading the posts on this topic I am taking myself off of this med. Hopefully, I can gain back some thinking skills. Even the simple task of typing seems to be "labor intense"....

thanks for posting...

 

[KathyH]

This is exactly how I felt. My anuerysm was at 4.7 though and my aortic regur was also mod- severe. My cardiologist felt it was too early for surgery, but I wanted an expert opinion, so I went to Brigham & Women's which is rated #3 in the country. He suggested surgery within 3 months, which I had. I am also 50 and diabetic so that figured in to my decision. The surgeon told me that if it was just an aneurysm he would until 5 but since I had alot of regurgitation and the stress test showed some ST changes on the EKG which indicated that my coronary arteries werent getting enough blood . I did not have any heart damage, no enlargement. I did very well post op.
It is a difficult decision to decide what to do. It took me a year to see a surgeon. Best of luck.
Kathy H