One Year in the Waiting Room--CT and Echo Today

[PJmomrunner]

Well... I didn't mention ahead of time that I was having my one-year CT and echo today because I figured it would be the follow-up appointment a week from now that would yield some real news...perhaps.

I drove 6 hours (3 there, 3 back) to have the tests and I arrived home exhausted and went to our local high school's football division championship game (lost...they were 11-0 going in, including the regional championship). What a great game--even though we lost 33-41. Arrived home from THAT even more exhausted and watched the MTV music awards--Bob Geldoff is amazing...Coldplay...Foo Fighters...very nice evening.

Anyway, I know nothing about the CT, but I was able to get the echo tech to comment on the leakiness of my aortic valve. After telling her it had been deemed bicuspid and "mild to moderately regurgitant," she queried, "moderate? It's barely mildly leaky," which I liked the sound of. (She also seemed a bit skeptical about its bicuspidness--mentioned twice that usually males have bicuspids and used the word "if" relative to its being bicuspid once.) She was a bit cagey about the aneurysm, but said she couldn't see my entire ascending and that the CT would (of course) be the better test for that.

So...if Dr. Deeb says the valve is only mildly leaky and the aneurysm is still 4.5cm (or any amount larger), why shouldn't I ask him to fix the aneurysm and let me get on with life? I am far less fearful of a mildly leaky valve than I am an aneurysm. And as long as I have the aneurysm I can't run or exercise so that I get my heartrate up. As I understand it, nothing else will change--there will be no lifting, pushing or pulling over 20 to 30 pounds ever again. What do you think?

 

[JohnnyV_46]

Wow it really has to suck to have to wait for numbers like that. I didn't know until it was almost too late so I skipped that waiting stage. If your quality of life is so affected and its just a matter of time, why don't they just get on with fixing the troubles before it gets that close to killing you? Hope you get some relief soon, both for the worrying and the way its making you feel.


JohnnyV

 

[aussigal]

Hi there PJ....
I feel your anguish too...I am in the same waiting-room ...which is why I changed Cardioligists. This new guy has experience in cases like mine and is older too. It was a hard thing to do but I wasnt prepared to wait for this aneurysm of mine to grow to 5.5 before they OP on it.

mmm...I , like you have an aneurysm worse than my BAV and cant understand why they wont just go in and operate on the annie?
Is this the surgeons word or your cardioligists ?...

My new Cardioligist is sending me for a surgical referral as soon as we get all the accurate measuring done. Whereas the other guy said he wouldnt let me near a surgeon til I was over 5cm . I am much happier in this new waiting room .

Good luck
ton

 

[PJmomrunner]

Thanks for the comisseration, folks. It just seems to me that the aneurysm isn't going to get better and the valve may take a very long time to get worse, so why not fix the aneurysm and leave the valve and heart tissue with its bundles and nodes alone for now?

Is this the surgeons word or your cardioligists ?...

This is the surgeon (only I haven't talked to him in 6 months), who is a very experienced aortic specialist--has done only valves and aortas for the last 10 years and he's about 53. His/my magic number is 5cm, but I wonder if he'd flex on that if my valve is as good as the tech thinks?

 

[Mike C]

all my tests showed my bav to be in very good condition but the anneurysm had to be repaired. when the surgeon got in, he found the bav to be very thin, although possibly due to same genetic defect as the weakness in aorta, he felt by the way it looked like it was being stretched by the anuerysm.

not advocating either way, not even sure if its true but just trying to give you some info you may not ahve thought of.

tough decision, i only had a month from discovering to surgery and i know how tough that was.

Mike

 

[PJmomrunner]

Hi Mike:

Thanks for responding. That's helpful info, actually...I guess it weighs in on the wait side, though....'cause it kinda says your valve looked fragile even if it wasn't acting fragile yet, right? What size was your aneurysm?

BTW, I have a brother in Haverhill.

P. J.

 

[Karlynn]

PJ - I noticed this little tidbit in your signature "former runner
I will run again one day,
for now I patiently wait. "

I knew you were/are a runner. I missed the point that you aren't running now. Is this because of your aorta and valve, or because of being a busy woman?

I guess my thought is - if it's your heart that keeps you from running and you are waiting to get it fixed in order to run again then........the heck with the doctor's magic numbers. We have many people who's numbers are horrible, but who's lifestyle hasn't been impacted. They sometimes question why they need the surgery if they're feeling fine. Then we have those who's numbers aren't quite as horrible, but who's lifestyle has been impacted. Maybe not for the doctor/surgeon, but for the patient - isn't it the goal to have as normal a lifestyle as possible.

Just a thought - disregard my blather if it's your busy life that keeps you from running.

 

[PJmomrunner]

Yes, Karlynn, it's the aneurysm that keeps me from running. Surgeon says it'll be fine for the umptyeigth times I run and it'll blow the umptyninth time I run and I want to live and my family needs me to live more than I want/need to run.

So, if we're waiting for either the valve or the aneurysm to get to the point where it meets the standard criteria, and I have new data that says the valve's actually pretty good (and I'm only speculating this based on the echo tech's comment), it would seem to me that only the aneurysm is now under consideration and that's not gonna get smaller, so why wait? But if the valve still needs to be replaced and we are talking a tissue valve (and we are talking tissue and yes, I've considered all options) then waiting is best 'cause we don't want to start the clock on surgery #2 any sooner than necessary. Mike probably made a salient point tho--valve could look crappy once he gets in there, so why go in any sooner than necessary. But then you make a good point too...

PJ - I noticed this little tidbit in your signature "former runner
I will run again one day,
for now I patiently wait. "

I knew you were/are a runner. I missed the point that you aren't running now. Is this because of your aorta and valve, or because of being a busy woman?

I guess my thought is - if it's your heart that keeps you from running and you are waiting to get it fixed in order to run again then........the heck with the doctor's magic numbers. We have many people who's numbers are horrible, but who's lifestyle hasn't been impacted. They sometimes question why they need the surgery if they're feeling fine. Then we have those who's numbers aren't quite as horrible, but who's lifestyle has been impacted. Maybe not for the doctor/surgeon, but for the patient - isn't it the goal to have as normal a lifestyle as possible.

Just a thought - disregard my blather if it's your busy life that keeps you from running.

 

[Mary]

PJ,
My echo never showed my bicuspid, so the tech's comments are probably worthless in that regard. Actually I should say, my echoes, because I had many, many before surgery.

I don't what the complication rate is on fixing the aneurysm, but it would be a tough, tough surgery. I know you feel that you've been waiting a long time, but a year isn't that long in the greater scheme of things.

You will have a better idea after you receive the CAT results. I just want to caution you not to anticipate making decisions that might not be needed yet.

 

[PJmomrunner]

Mary, you're right of course that this is purely speculative. I do think it's worth asking him, if the valve's only mildly leaky,

to fix the aneurysm and let me get on with life?

, just to see what he says. I do believe the valve is bicuspid and take the view that lots of kinds of malformations of the AV fall under that heading (especially if they come with a dialated aorta). It's just interesting that the tech viewed my valve as basically normal. Only the surgeon's view really counts tho.

I know you feel that you've been waiting a long time, but a year isn't that long in the greater scheme of things.

Thoughts like this help to keep it in perspective, but it is hard. One friend said, "I'd be sitting at stop signs waiting for the light to turn green if it were me" and that's very descriptive of what it's like for me to wait. Always somewhat distracted by the possibilities (however remote) that underly every decision: Can I lift that box? Should I be swinging that axe? Am I out of breath because I'm out of shape or has something changed? But...wait I will, if that's what makes sense....

 

[KimC]

P.J.,

I was advised to quit heavy aerobics last summer and saw a trainer for four weeks who taught me weight-training and stretching exercises, specifically tailored to my needs. (You might not be able to do certain weight-baring exercises). She also taught me yoga and breathing techniques.

The change has done me good. I experience fewer symptoms and am benefiting from the body-mind aspect of yoga.

Echoes are confusing, aren't they? Last summer, I had FOUR interpretations of an echo, the first two revealed "mild" heart dysfunction and dilatation; the second two insisted no dysfunction. I'm going with the latter. I'm already taking heart meds, so what's the good in having a definitive? If my next echo in January still has questionable findings, then I may be facing a right heart cath, and I'd rather not think about that for now.

I hope your CT results are better. Let us know.

Best,

 

[Karlynn]

Mary or I could get out our crystal balls and tell you what your valve looks like. Doesn't seem like too many things in life are clear cut - and the ones that are, more often seem to be the unwelcomed choice. Oh well.

Have you received the "official" report on your echo yet?

 

[PJmomrunner]

I'll get the official report next Friday from the surgeon. Crystal ball...hmmm...let me think about that.

 

[Mary]

I'll get the official report next Friday from the surgeon. Crystal ball...hmmm...let me think about that.

Ok,
Here's a picture of the crystal ball I use.
I lend it to doctors on ocassion!

 

[jkn2kids]

PJ-
I have been waiting 18 months and know how terrible the wait can be.My cardio recommended a surgeon who wanted to wait until my aneurysm reached 5.0 cm.I decided to get a 2nd opinion from a surgeon at John's Hopkins(who it turns out is a great surgeon and down to earth).He recommended a heart cath to see if that would push me over to the surgery side.The cath showed my LV pressure to be twice the normal pumping rate.It also showed some thickening of the wall.My regular cardio didn't do this cath,but the cardio who did do it said I needed surgery within the next couple of months.I have been on vacation so I haven't had a chance to talk to my surgeon.I think a heart cath will give you and your surgeon a definitive answer one way or another.I was very relieved to finally have this indecision off of my back.Now I only have to worry about the surgery and not if I will have the surgery.I hope things work out for you!!!

 

[Mike C]

my aneurysm was 5.2 when diagnosed (35years old), the size coupled with bav and no idea how long it had been deveoping, everyone said time to go, so from diagnosis to surgery was about 5 weeks.

Mike

 

[aussigal]

Yeah...I forgot you havent had the "official-word" yet ...

But wait and see what that CT-Angio-scan says..theyre sposed to be more accurate than echos, then I think the MRA's are even more accurate...

My Cardio says it can also depend on the expertise of the operator/tech doing the scans.

My Ct angio says 4.7 by 4.8 is the size of my aneurysm, and that guys magic number was 5 or 5.5,,,there was no way I was worrying and waiting that long

For me,,,from all the literature I have read here, coupled with the Strong family history and Marfans now too , I am already at the magic number of 4.8 which is close enough to the edge of the cliff for me thankyou!

I dont want to confuse you cos I'm only new here myself... but boy Do I know the worry , should I wait, hes the specialist, I am paranoid, what if it blows!?, these and many more unconstructive thoughts constantly racing through my head as soon as I changed specialists these all dissappeard with the newfound confidence in this new wonderful Cardio.

as a bonus my BP has come down to 110/65 now so I made the right decision for me

hope you have the same..its easier in the waiting room when you totally trust what your doctors are up to..That I have learnt already...It was hard to switch docs cos i did like my old cardio BUT he just wasnt taking me seriously-enough in my opinion.

HURRY UP FRIDAY !...we are all waiting

 

[Mary]

Yeah...I forgot you havent had the "official-word" yet ...

But wait and see what that Angio says..theyre sposed to be more accurate than echos, then I think the MRA's are even more accurate...

My Cardio says it can also depend on the expertise of the operator/tech doing the scans.

My Ct angio says 4.7 by 4.8 is the size of my aneurysm, and that guys magic number was 5 or 5.5,,,there was no way I was worrying and waiting that long

For me,,,from all the literature I have read here, coupled with the Strong family history and Marfans now too , I am already at the magic number of 4.8 which is close enough to the edge of the cliff for me thankyou!

I dont want to confuse you cos I'm only new here myself... but boy Do I know the worry , should I wait, hes the specialist, I am paranoid, what if it blows!?, these and many more unconstructive thoughts constantly racing through my head as soon as I changed specialists these all dissappeard with the newfound confidence in this new wonderful Cardio.

as a bonus my BP has come down to 110/65 now so I made the right decision for me

hope you have the same..its easier in the waiting room when you totally trust what your doctors are up to..That I have learnt already...It was hard to switch docs cos i did like my old cardio BUT he just wasnt taking me seriously-enough in my opinion.

HURRY UP FRIDAY !...we are all waiting

Tonia,
Over here, when we talk about an angio we're talking about a coronary angiogram which is an invasive procedure much different from the CT scan that PJ had done. Sometimes it is called a right/left heart catheterization and the groin is the site for the catheter insertion. A CT scan with contrast would involve using an IV with dye while the x-rays are taken.

When did your surgeon say you would have surgery?

 

[mntbiker]

Hi PJ,
I get to chime in on a post of yours now.

My take on it: If the the numbers are close and the Dr has imposed restrictions get it done. I don't want restrictions, I don't want to worry about flipping my kids around, I don't want to get off my bike and I don't want to worry something is going to happen. If it is bad enough to impose restrictions it's bad enough to fix.

Good luck and I hope the numbers are what you want them to be.

 

[PJmomrunner]

People say it all the time on this website, but let me join in: it is so wonderful to talk with a bunch of people who "get it."

Mary, it's funny you mention a crystal ball. I just finished a book by Allison DuBois called Don't Kiss Them Good-bye. She's the woman on whom the NBC series Medium is based. She is a real life medium in Arizona and she tells people things like, "go to the doctor and have your heart checked out," because she senses problems. She does readings for people (no crystal ball required)...I'm about as much a skeptic as I can imagine, and yet without really trying very hard to convince, she's convincing. A crystal ball would be so nice.