interesting meeting with the surgeon

[pekster11]

I've just come back from an echo scan , and a meeting with one of the surgeons this afternoon

He has asked for me to have another CT scan, focusing in on the aortic root

Even though the echo scan showed my ascending aorta as having a diameter of 50 mm (it's been around this for a number of years), he and the other members of the surgical team , think the dilation of the aorta is being caused solely by the increased stenosis of the valve and the increased blood velocity and pressure through the root that is causing, and not by any problems with the tissue itself (as in Marfans syndrome)

After the CT scan they will discuss whether to only replace the valve during the operation, and not the ascending aorta/aortic root

Have to say ,I was not expecting this

I assumed with the diameter at 50 mm, they would replace the root, no questions asked

 

[pekster11]

Also, as the CT scan will not happen for around a month, this has again pushed back the expected surgery date to summer

 

[tom in MO]

My commiserations. I guess there's not much you can do in the UK to speed up the process. You might want to ask if your condition is such that you can afford to wait. That's probably a given though if they are paying attention.

 

[Warrick]

Seems odd they would think that the aorta dialation is not related to the fact your valve is bicuspid, from this site created by a surgeon-https://badaorta.com/double-trouble-bicuspid-aortic-valve-bav/

“The second concern that is brewing in people with BAV, is the ascending aorta and aortic root are prone to dilate and expand prematurely.
The associated condition, called aortopathy, stems from a genetic abnormality of the elastic tissue of the ascending aorta which occurs in patients born with BAV.”
“However, since the aortic tissue in the ascending aorta is genetically abnormal and more fragile and prone to tearing, ripping or giving way, the cutoff for patients with BAV Syndrome is 4.5cm.
Many surgeons don’t follow these most recent guideline criteria.”

 

[pekster11]

As I'm not showing any symptoms yet, and am in good health, whilst these further tests are on-going, i'm not priority for surgery

If, i were to start getting symptoms that would change immediately

 

[pekster11]

https://core.ac.uk/download/pdf/82816012.pdf

just read this paper

maybe this is what the surgeons are thinking ?

 

[pellicle]

IIRC 50mm isn't "oh shlt" levels, but its on the cusp

Aortic Aneurysm | ANZSVS
When an aneurysm reaches 5.5 cms most surgeons would consider offering surgical intervention. This is because, at this size, the aneurysm has a greater risk of rupture. It then becomes as safe to have an operation to repair the aneurysm, as it is to leave the aneurysm alone.

 

[pekster11]

IIRC 50mm isn't "oh shlt" levels, but its on the cusp

Aortic Aneurysm | ANZSVS
When an aneurysm reaches 5.5 cms most surgeons would consider offering surgical intervention. This is because, at this size, the aneurysm has a greater risk of rupture. It then becomes as safe to have an operation to repair the aneurysm, as it is to leave the aneurysm alone.

yes, i had assumed i would be getting the valve and aortic graft , no questions

the meeting i had with another of the surgeons, just before xmas had confirmed this

and now it seems they may be planning on leaving the aorta alone.....thinking the new valve will stabilise it

i was v surprised yesterday when the surgeon said this to me

 

[AnnieP]

yes, i had assumed i would be getting the valve and aortic graft , no questions

the meeting i had with another of the surgeons, just before xmas had confirmed this

and now it seems they may be planning on leaving the aorta alone.....thinking the new valve will stabilise it

i was v surprised yesterday when the surgeon said this to me

 

[pellicle]

and now it seems they may be planning on leaving the aorta alone.....thinking the new valve will stabilise it

They must know what they're doing ... right?

How far up the aorta does the aneurysm extend?

 

[pekster11]

They must know what they're doing ... right?

How far up the aorta does the aneurysm extend?

it's the ascending aorta just as it exits the valve.
not sure have far it extends tbh.....something i'll have to ask

yes, i'm sure, if the surgeons are thinking of this, it's for the best

i'm wondering now, if to reduce the size of the affected aorta, they will do a reduction aortoplasty ?
again something to ask next time i meet one of the surgeons

 

[pellicle]

Hi

not sure have far it extends tbh.....something i'll have to ask
...
again something to ask next time i meet one of the surgeons

that's one of the real benefits here, even if you discount the advice from other patients it always results in your thrashing through things more and coming up with a list of prepared questions which are formed in discussion of what is actually bothering you (as well as some others you hadn't thought of.

Sort of like this phenomenon: L'esprit de l'escalier - Wikipedia

 

[Protimenow]

I read here that you have to wait for your diagnostic tests. (Do you have to wait long in the UK?).

I've gone to an HMO. I saw my cardiologist in mid-January. He prescribed an echo and a stress echo. The HMO STILL hasn't approved either test. Fortunately, I don't think the tests would find much progression of any issues (it's been two years since my last testing), but I still don't like waiting until my new insurance provider decides to approve these tests -- if at all.

What does a cardiologist know that an actuary doesn't?

 

[pekster11]

I read here that you have to wait for your diagnostic tests. (Do you have to wait long in the UK?).

I've gone to an HMO. I saw my cardiologist in mid-January. He prescribed an echo and a stress echo. The HMO STILL hasn't approved either test. Fortunately, I don't think the tests would find much progression of any issues (it's been two years since my last testing), but I still don't like waiting until my new insurance provider decides to approve these tests -- if at all.

What does a cardiologist know that an actuary doesn't?

well, for the latest CT scan, i'm going to have to wait 4-6 weeks
depends how urgent you need these things on the NHS
as mentioned before, if i was symptomatic they'd be pushing things along alot faster

 

[bizinsider]

As I'm not showing any symptoms yet, and am in good health, whilst these further tests are on-going, i'm not priority for surgery

If, i were to start getting symptoms that would change immediately

To be taken with a grain: I'm asymptomatic but I have been getting scanned every three months (alternating echo/MRI w/o contrast) for two years, stepped up from every six months...and before that 1x a year. The increased scans were the result of expansion of my ascending aorta and signs of dilation of my LV. As time went on the LV dilation, extremely mild, seemed to reduce itself and my aortic regurgitation (BAV) remained moderate to severe, with my stenosis considered moderate.

My most recent scan showed that my root had expanded to 4.9 cm from 4.6 cm in six months. That was enough to get everybody's attention. My AA remained at 4.9.

The overall view locally was to get an echo in March (the MRI had been in December) and see where things stood. But with a grandchild due in early July, we didn't want to risk surgery getting in the way. So we told the local team that we wanted to get a second opinion at the Cleveland Clinic, where I had a series of tests (CT, stress echo, echo) and met with the head of the echo-cardiology unit and my surgeon, who runs the institute. (In other words, they seem like they know what they're talking about.) Their view was that even though I believe I'm asymtomatic, my valve had slipped to severe regurgitation and stenosis and that I should accelerate my surgery plans. My LV was again dilated and my MV was starting to leak.

The suggestion to get surgery "soon" was not based on my aneurysm, which we have all been watching closely, but my BAV. They felt that even with my measurements I'm at the borderline surgical stage for the aorta. (At Cleveland, at 5.0 they like to go.) They'll do the whole shebang while they're doing it - BAV, root, AA. Given my current situation, they believe if I do surgery now my LV and MV should repair themselves.

My point of all this: We always thought the aneurysm would get me there before the valve; turned out to be the other way around. Goes to show what I don't know! T-minus two weeks and counting...

 

[Protimenow]

I have no grandchildren and, unless one of my kids adopt one, I never will. So, I can't quite feel what you're feeling about waiting for a grandchild in July.

Unless you're the one who is going through labor, I see little reason to put your health at additional risk while you put off surgery. If your symptoms are rapidly progressing, this doesn't sound like a good plan.

It's February (you know this) and if the surgery is sooner rather than later, the possiblities that you'll have had your surgery and recovered enough that you can hold your new grandchild is quite high. This should be much better than being a grandparent with weakness and other symptoms that come with heart problems, or one, perhaps, that won't be there at all because of an aortic aneurism.

If it was me, I'd get the thing fixed now, and plan to be there in July for the arrival of your grandkid.

 

[bizinsider]

I have no grandchildren and, unless one of my kids adopt one, I never will. So, I can't quite feel what you're feeling about waiting for a grandchild in July.

Unless you're the one who is going through labor, I see little reason to put your health at additional risk while you put off surgery. If your symptoms are rapidly progressing, this doesn't sound like a good plan.

It's February (you know this) and if the surgery is sooner rather than later, the possiblities that you'll have had your surgery and recovered enough that you can hold your new grandchild is quite high. This should be much better than being a grandparent with weakness and other symptoms that come with heart problems, or one, perhaps, that won't be there at all because of an aortic aneurism.

If it was me, I'd get the thing fixed now, and plan to be there in July for the arrival of your grandkid.

Ah, I should have been a bit more clear (and probably wasn't b/c I've posted my tale elsewhere here): I'm with you! After visiting the surgeon and Cleveland Clinic we made an appointment on the spot. My date with destiny is March 4. And before holding my grandchild, I'm sticking with plans to go to NY about 3 months post surgery, then my daughter's baby shower up your way. The NY trip, a biz trip, will depend obviously on my recovery. CC says you should be able to travel and get back to your daily routine by 10 weeks, barring complications. I'm in good enough physical shape (heart muscle is apparently strong, my lungs are strong) that I'm hoping I'll be able to stick with my plans. (Though, being the realist I am, I did buy travel insurance.) My mental state is very strong going into this. I've had years to emotionally prepare. (The ultimate arbiter of that, of course, will be my BP the minute they put me on the gurney and wheel me in!)

 

[KatherineA]

Last summer, I consulted with a surgeon in Baltimore because my valve had gone from moderate to serious quickly. I thought I should have an option available that was less than 6 hours away (like Cleveland). My blood pressure was insanely high at that visit. This is my usual MO with a surgeon or any new doctor. He had a wonderful response: "If a patient's blood pressure is not at least a little high in meetings with a heart surgeon, I wonder about that person".
It gave me great relief and I took a big breath and felt a bit of relax coming on.
I remembered that surgeon's response when I was on the gurney and it helped a lot there too.

Hopefully, this little tip will give you a grin and an opportunity to take big relaxing breath too.

 

[bizinsider]

Last summer, I consulted with a surgeon in Baltimore because my valve had gone from moderate to serious quickly. I thought I should have an option available that was less than 6 hours away (like Cleveland). My blood pressure was insanely high at that visit. This is my usual MO with a surgeon or any new doctor. He had a wonderful response: "If a patient's blood pressure is not at least a little high in meetings with a heart surgeon, I wonder about that person".
It gave me great relief and I took a big breath and felt a bit of relax coming on.
I remembered that surgeon's response when I was on the gurney and it helped a lot there too.

Hopefully, this little tip will give you a grin and an opportunity to take big relaxing breath too.

That's funny and great insight. Honestly, Katherine, I am a walking-talking model of White Coat Syndrome.

 

[AZ Don]

From the paper posted above:

practice guidelines recommend performing aortic replacement at the time of AVR if the aortic diameter is greater than 45 mm, especially in patients with a bicuspid aortic valve (BAV).

The paper then goes on to say:

These findings suggest that recommendations in current guidelines should be reevaluated through further clinical investigations and better data analysis.

So it seems to me that even the paper that appears to support your Dr's position, in fact argues against his recommendation, unless the additional investigation, analysis and re-evaluation has been done.