living with an aortic aneurysm

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jjay32

jjay32

VR.org Supporter
Supporting Member
Joined
May 15, 2008
Messages
180
Location
Spokane, Washington
Hello all. I have been reading the posts on this sight to get more information on bav and assending aneurysms. I have known that I had a bicuspid Aortic valve since about 1996. Had an echo done each year for a while, no changes. Due to no insurance and a job change I did not have any tests done for 9 years. Well I asked for an echo, and it came with a 4.7cm assending aneurysm and mild stenosis of the BAV. Due to some mild chest pain, they did a followup ct angograph and that came up with the aneurysm at 4.6cm. This has been a shock to me and is taking a little time to adjust to. I did a 2 week blood pressure check and my average is 145/83. The doctor feels this is ok and does't need to be lowered thru meds. He also thinks a follow up can be done a year from now. My conceren is that the last echo was 9 years ago (aorta had a 3.2cm then) and we do not know if the growth of the aneurysm has been steady all these years or is mostly a new event. I feel that a follow up in 6 months is prudent. Then there is the question on when to get the surgery done, when it hits 5.5cm (standard) or at 5.ocm due to the BAV. Any thoughts?

And thanks for listening. Jerome
 
Hey Kerome,

I'm sure others will echo my opinion that there really is no standard for waiting for surgery until your aneurysm grows to 5.5 cm. Many other forum members have had their aneurysms fixed before 5.5. Opinions regarding when a fix is necessary varies among doctors.

Opinions may vary, but 5.5 is pretty large. Consider this generalization: a typical normal aorta is roughly the diameter of a nickel. Lay a nickel on the centimeter side of a ruler and compare the diameter of the nickel to 5.5 cm. The difference wil probably shock you. My aneurysm was 5.8 when it was fixed. Based upon the condition of the tissue removed during my surgery, my surgeon estimated that I had between six weeks and six months before it would have blown.

I like your thoughts about having the aneurysm monitored closely. I avoided seeing doctors for twenty-seven years.

-Philip
 
Hello Jerome

I also have BAV ( diagnosed July '07 ) with a dilated aortic root of 3.8/3.9cm and no aneurysm in the aorta that we know of. When my cardio first checked my blood pressure it was 139/60 and that was high enough for him to put me on two types of medication to bring it down ( it averages around 110/55 now ).

I don't want to worry you and i'm certainly no expert as all this is new to me but i don't know if i would be comfortable with slightly raised BP and an aneurysm.

The first cardio i saw didn't think i needed any meds either. You might want to play it safe and get a second opinion.

Just a thought - good luck.

-Warren.
 
I'm in the same boat jjay, although I do have a pretty good indication of how fast this thing has grown, it gives me no solace. I'm worried about it just as much as I would if I just happened to only have this last scan.

My general feeling is that I would rather have this thing repaired and be in a controlled environment with circumstances that are planned than to have it explode on me and have some local yocal surgeon touching my aorta. I'd rather go get it done in Cleveland or some other expert institution on aorta surgery.

The resounding theme with aortic aneurysms is that it's way more dangerous to have a rupture or dissection than it is to have a REPAIR.

I was told by Dr. Svensson to wait until 4.8 or 4.9 cm, if that gives you any insight. I also have a bi-cuspid aortic valve.
 
Jerome,

I'm also a bicuspid, with a bicuspid son, but no problems with my aorta.

I believe your blood pressure is too high, and that is an easy first step to take(control blood pressure) while watching the aneursym. I would really press the cardiologist on it.

I also believe that you are correct in wanting another scan in six months to determine the rate of growth. If there is minimal growth, then you might give it a year before the next one.

I believe rate of growth will also factor into the determination of when you are operated on. Are you a smoker? I've seen statistics where smokers generally need theirs replaced/repaired at 5.0 rather than 5.5
 
Thanks for the thoughts! Mary, I do not smoke. I plan to follow up on the blood pressure meds. Most of the aortic surgeons are out of one office in Spokane. Not sure about how to choose one at this time. They mostly do their surgery at Sacred Heart Hospital.

Jerome
 
JJ, I am in a bit of a different situation, I have already had one aneurysm repaired and a second developed a few years post op.
The medical community was not as versed with the connection to BAV and ascending aortic anerysms in 2000 as they are now. My surgeon told me if he knew then what he knows now; he would have replaced the whole aortic arch when he was inside the first time.

My current aneursym is approximately 4.6 cm or so but has stabilized over the last three years. We are keeping a close eye on it and I AM ON BP MEDS. You should be as well, IMHO.

WHile you are in the early stages of dealing with this; be sure to not just go to any surgeon; pick an experienced one. This is not like just going to get a new family doc....this is your life in their hands; Literaly.

Just some of my thoughts. I trust you will follow up with your doc, and if not satisfied...get more oppinions.

Ben
 
Ok...as others have said theres no hard and fast rules. However heres my history.
- Diagnosed with BAV with moderate regurgitation 18 months ago.
- 12 month follow up 6months ago with different cardio where I was diagnosed with AAA of 4.7ish and told to wait til 5.5cm.
- discovered the aneurysm on first test but never notified and started researching.

Found conflicting evidence but it indicated that in the presence of a BAV with regurg and a AAA it should be repaired at 4.6cm. (I think I found most relevent info on the Mayo site and the Medical Journals from the Association of American Cardiologists.)

I went straight to a surgeon who gave me the same advice independently.
That I should have been in 12 months ago.
Also told me of a mildly leaking mitral valve. Also on the report and not told to me.
My BP is was 143/93 and the 2 cardios said it was fine but the surgeon said to lower it with meds and diet before surgery.

Go figure. Some cardios miss stuff and some dont seem to know.
Do the research and help yourself.

I was shocked to discover I needed OHS at 36 but at least it was discovered before it the aneurysm blew.
Only problem is that at that size even though it needs to be done its still seen as elective surgery and with no insurance myself I am having to wait til 31st July.
But at least it will be fixed though I am still having a hard time deciding on a valve. Maybe I should just trust the surgeons recommendations.:eek:

Hope you get a second and third opinion to be reassured.
 
IMHO you need to get a 2nd opinion and see a surgeon. I think your blood pressure is too high for a known aneurysm. My son's aorta dissected before we ever knew there was a problem and he now faces a lifetime of severe heart problems. I am certainly not in the camp that says wait till there are symptoms. You are healthy now and can remain so if you take care of this before it is a problem.
 
AMEN to all of the above.

I liked Oaktree's analogy of the bubble in the sidewall of an overinflated tire.

When it comes to getting other opinions, I strongly suggest that you start contacting SURGEONS with Considerable Experience dealing with BAV and Connective Tissue Disorders that present as Aortic Aneurisms.

Note that the Vast Majority of "Heart Surgeons" will not have this specialized experience. Several of the Top Names in Aortic Surgery have been mentioned in previous posts by Oaktree and/or Arliss.

Also note that you can simply CALL the office of 'surgeons of interest', tell the receptionist that you have BAV and an Aortic Aneurism. That is ALL the 'referal' you will need. They will then want to see copies of your latest Echocardiogram (film or CD and written report) along with other relevant test results such as film or CD of any Heart Caths or CT Scans or MRI's.

When it comes to Timing of Surgery, the Surgeon is best qualified to make that recommendation.

Bottom Line: Start collecting copies of your Test Films and Reports. There is usually NO Charge if you tell them you are going to take them to a Surgeon for his review and recommendation.

Regarding your Cardiologist's recommendation of NOT medicating your High BP and waiting a full year before doing another echo, I'd be looking for another Cardiologist. He has already done his job, diagnosing your condition and he doesn't seem to want to treat it. Move on.

'AL Capshaw'
 
Hi Jerome,

Reading what you have been told is extremely concerning. It tells me that so many of those with BAV still are subject to thinking and treatment from the "dark ages" when it comes to the aorta. This kind of thinking can and has been deadly.

New recommendations regarding blood pressure were published by a group of physicians under a study called JNC7. Their work describes "prehypertension" beginning at systolic (top number) of 120. It is most desirable for everyone to have blood pressure under 120. People that do, live longer statistically. Your average blood pressure is over 140 - you have hypertension. Even if you did not have an aneurysm, it should be lowered with medicine.

But you have an aneurysm, and that makes blood pressure an even greater issue. Your aorta has weakened tissue, causing it to bulge in that area. Keeping pressure as low as possible makes a lot of sense to keep you out of trouble. Oaktree used the example of a tire with a bulge in it - you would not over inflate that tire. A plumber would tell you what mine did recently - the pressure in our pipes was way too high because the regulator was not working, and I needed to lower that pressure asap or I was going to have a big problem when a weakness somewhere blew and water gushed all over. We had a new regulator the very next morning!

I do not understand why physicians fail to address blood pressure in those with aneurysms. This happened to my husband locally in 2001, and it upsets me greatly when I see it continuing to happen. He was blessed to find someone who addressed his blood pressure and kept him safe until surgery.

You might benefit from some of the information on this link, which indicates a systolic pressure of 105-110 for those with aortic aneurysms.
www.cedars-sinai.edu/aorta

Best wishes,
Arlyss
 
Just got back from work. Thanks for all the input. Sacred Heart hospital in Spokane ranks in the top 10% in cardiac surgery in the country. Sacred Heart does more valve replacements than any other Washington State hospital. It is a central hub for Eastern Washington, Idaho and Montana. Oaktree, The doctor you linked to is one of nine in that group-they are now part of the Sacred Heart Hospital system (hospital bought out their practice?)I have heard good things about this group, so I will call tomorrow. Yes I want a second opinion, and I plan on having a follow up echo at least in 6 months. I am one of those that don't like to wait around when there is something that can be done. I do have a copy of my latest ct scan on disk ( some pretty cool pictures!)If anyone is interested, I can post the results, although I am still trying to translate it into english!

Well off to bed, good night all! Jerome
 
jjay32 said:
I have known that I had a bicuspid Aortic valve since about 1996.... My conceren is that the last echo was 9 years ago (aorta had a 3.2cm then) and we do not know if the growth of the aneurysm has been steady all these years or is mostly a new event....Then there is the question on when to get the surgery done, when it hits 5.5cm (standard) or at 5.ocm due to the BAV.
Click to expand...

I have a similar mystery. My Dad remembers being told that I had an enlarged aorta when I was a teen. So.... when did it grow to its current size?

Since you're posting in the Connective Tissue Disorder forum, I assume you have one. That means you will probably be advised to replace your aorta and valve at a small diameter than the average person. I'm at 4.8 at midpoint, and I have to get surgery this year. That's a smaller diameter for surgery than a lot of people on this group.
 
BAV and TAA

BAV and TAA

I have known I have a bicuspid aortic valve and an ascending thoracic aneursym for 5 yrs now. I have a CT done every 6 months. I am closely monitored by drs at Cleveland Clinic because when it is time for my surgery, I am very high risk. I have complete heart block, with pacemaker, and am pron to producing multiple blood clots. Not only that, but when I was 24 I had breast cancer and I had 3 months of intensive radiation to my chest wall. The dr I saw at CC said that my surgery is going to be very difficult and my recovery time is going to be very painful and long.
 
Travel for surgery is most likely out of the question due to insurance limitations. I set up an appointment with my GP to go over what is happening and see what recommendations he has, so far he has been excellent in referrals. I will let you know the outcome, it is next week.
The practice that I am looking at for this surgery has already had one member solicited by the Cleveland Clinic, and a couple of years ago there was an article in the local paper about the "perfect storm" when in a space of one hour Spokane got 4 emergency OHS. Three of them were aortic dissections. All the doctors that performed the emergency surgery's were from the same practice. After talking to my GP, I will set up an appointment with a surgeon and ask questions about connective tissue disorders, the best time for the surgery, how many surgery's they have done, mortality rates, etc. Any other questions I should be asking? Thanks, Jerome
 
jjay32 said:
After talking to my GP, I will set up an appointment with a surgeon and ask questions about connective tissue disorders, the best time for the surgery, how many surgery's they have done, mortality rates, etc. Any other questions I should be asking? Thanks, Jerome
Click to expand...

Good luck man. I hope that you do get to ask all of your questions, but I went to a surgeon and cardiologist with a list and I got hurried out of the room. Obviously I'm pretty much still looking for a surgeon and cardiologist. I don't mean to be discouraging at all, in fact I hope you don't have to experience that, but I think it's pretty common.
 
Oaktree said:
I don't think they can repair a bicuspid stenotic valve, so if the surgeon says anything other than replacement, then to me that would be a bad answer.
Click to expand...
There is a repair for a bicuspid AV however, and it involves reshaping the leaflets to improve valve functionality. I think that in the case of BAVD presence and a dilatation, the odds are that, in order to lessen any additional OHS requirements, the stenosing valve would be better replaced while they're already in there. The vessel walls may not stand up to the valve-sparing repair anyways, since the aorta is already thinning.
 
Jerome,
I'm not sure this has been covered in other replies or not for your ascending aortic aneurysm, but review with your surgeon resection and replacement of the ascending aorta extending into the transverse part of the aortic arch to avoid another surgery down the road. Also ask what criteria the surgeon will use to determine this (semi-beveled technique?) or whether or not replacement of the entire aortic arch will be necessary.
All my best,
MrP
 
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