Help- Brother was diagnosed Bicuspid

[aetos]

With his aoerta 47 mm (from what he believes they said) per a recent eco he did yesterday due to my emergency surgery in late January. Was told to seek a cadioligist for consultation. He was diagnosed as bicuspid, what I had as well. Surgery inevitable and will he require a mechanical valve as well?



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Aneurysm of aortic root & ascending aorta. Bentall procedure, mechanical valve 27mm carbomedics. Replacement of aortic root + ascending aorta and aortic hemiarch

 

[aetos]

My kids as well as my nephews were all checked. Only my brother who has this as well and is terrified after what I've been through.

 

[honeybunny]

Does he have aortic stenosis or just a bicuspid valve? I lived for 60 years with a bicuspid valve without a problem until it calcified. I guess I'm not clear on exactly what the doctors diagnosed.

As far as the choice of valve, that should be his decision. There are many threads here on valve types. Younger people usually choose mechanical to avoid another surgery. I went with tissue at age 60. I may or may not need another surgery depending on how long I live and how long my valve lasts.

I recommend that your brother come to this site. Perhaps reading other people's stories will remove some of his anxiety.

Glad you're children and nephews are fine. My thought are with you and your brother.

 

[aetos]

Thanks, he was diagnosed with a bicuspid valve however they said his aorta (main I think) was at 47mm and some concern.
He's waiting for his family doc to refer him to a cadioligist for now to explain him the results.

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Jan 2016
Aneurysm of aortic root & ascending aorta. Bentall procedure, mechanical valve 27mm carbomedics. Replacement of aortic root + ascending aorta and aortic hemiarch

 

[epstns]

His aorta may be of more immediate concern than his valve. If he had "only" a bicuspid valve, he might or might not need it replaced at some point in the future. IIRC, only about 25% of patients diagnosed with bicuspid valves ever need to have them replaced. The dimensions of his aorta need to be monitored, however, and may drive the need for surgery before he even knows if his valve will need to be replaced.

If he does have surgery on his aorta, they may decide to preemptively replace his valve, just to try to avoid a second surgery later on if the valve deteriorates.

 

[aetos]

Appreciate the reply. The dimensions appear to have been a big concern during the test. Waiting for a cardiologist appointment to go in to details...
Thanks again

 

[AZ Don]

For what it's worth, the general guidelines for aortic aneurysm call for surgery when the dimensions reach 55mm, with or without a bicuspid valve. Complicating factors may suggest earlier intervention. Re. the valve, if it is well functioning a valve sparing procedure is an option. That's what I had done. Going into the surgery for my aneurysm it was estimated a 50% chance I would need another surgery to deal with the valve some day. It's since started leaking so those odds have gone up.

 

[aetos]

Thanks AZ, I'm fairly a noob to all this. So essentially he may not need and there is a possibility of him not needing a mechanical valve correct?

For what it's worth, the general guidelines for aortic aneurysm call for surgery when the dimensions reach 55mm, with or without a bicuspid valve. Complicating factors may suggest earlier intervention. Re. the valve, if it is well functioning a valve sparing procedure is an option. That's what I had done. Going into the surgery for my aneurysm it was estimated a 50% chance I would need another surgery to deal with the valve some day. It's since started leaking so those odds have gone up.

 

[AZ Don]

Thanks AZ, I'm fairly a noob to all this. So essentially he may not need and there is a possibility of him not needing a mechanical valve correct?

Yes, it's a possibility. My understanding is that once an aneurysm reaches 47 mm, it's progression is virtually inevitable. So while it may be a few years, surgery for the aneurysm will very likely be needed. In the meantime your brother should be under the care of a good Cardiologist to monitor the valve and the aneurysm. When it is time for surgery, IF his valve is well functioning, sparing the valve may be an option. Whether it is well functioning or not, replacement with a tissue or mechanical valve will be an option at that time as well. Sparing the valve is actually the newer of these procedures and may be a little more complex than replacing it but should be within the capabilities of a good surgeon at a good regional hospital. I should add that there are many people on this site doing well with mechanical and tissue valves. While it sucks to have to have part of the aorta and/or the aortic valve replaced, the key point is that these can be replaced and people generally do quite well with the options available.

 

[aetos]

Thanks AZ Don, appreciate the feedback
He has a doc appointment this coming week, hopefully he'll get him under some beta blockers and blood pressure pills for now and hopefully will get a cardiologist appointment very soon

 

[jjay32]

my aneurysm took 8 years to go from 4.6 to 4.9, so it could be years until he needs surgery. valve choice is influenced by many factors including your age at the time of the surgery.

 

[pellicle]

and aetos

I would like to take these points:

my aneurysm took 8 years to go from 4.6 to 4.9, so it could be years until he needs surgery. valve choice is influenced by many factors including your age at the time of the surgery.

and add that if your brothers need for surgery extends as far as 8 years then the medical landscape could well have changed significantly.

• mechanical valves which may not need AC therapy (ATS ForceField, Tricuspid mechanical)
• improvements in INR management (as we are already in posession of the technology software will develop to support the new systems)
• better tissue prosthetics may emerge (entirely speculative)

so its all looking good for this particular disease in the future

also, being terrified is (to me) an over reaction. I've had 3 surgeries starting at about 10 ... and here I am at 52 after my third at 48 doing well enough thankyou very much. Well enough to be planning a 5 or so day cross country ski trip around a mountain inside the arctic circle (if ever I can get out of Australia)

I travel freely and use low priced INR monitoring tools to manage myself totally. I drink what I want (just polishing off a beer now, will have a wine with dinner) I eat what I want (broccoli and pork for dinner tonight) and I hunt and hike and canoe. There is so much bullshit written about warfarin / coumadine and anticoagulation I can only offer this:

to wipe it up

enjoy life and life will probably not change as much as you fear post surgery (mine hasn't after 3 surgeries)

Me in 2009, 3 years before my last surgery ( which was my third, prompted by discovery of aneyrysm in 2011)

and teaching my Australian mates who came to Finland for our wedding XC skiing

Then, me 2 years after my last surgery back in Finland again and training:

Before I joined here I'd never been "horrified" about the prospects, or even ever heard anyone around me "scared shitless" about this sort of thing. Perhaps Australians are too stupid to be .. dunno

anyway, my POINT is this: not only is there life after surgery, its can even be a better one

Best Wishes

 

[aetos]

Thank Pellicle and great point!!!
All thee best

nyway, my POINT is this: not only is there life after surgery, its can even be a better one

 

[jjay32]

great response Pellicle, my cardiologist keeps saying the longer we can wait on the surgery the greater the medical advances might be (and are) Also in the states, we use double size rolls of tp as there is so much more to wipe off.

 

[epstns]

Also in the states, we use double size rolls of tp as there is so much more to wipe off.

You mean like telling people to "Roll up your pants -- it is too late to save your shoes!"

 

[cldlhd]

and aetos

I would like to take these points:


and add that if your brothers need for surgery extends as far as 8 years then the medical landscape could well have changed significantly.

• mechanical valves which may not need AC therapy (ATS ForceField, Tricuspid mechanical)
• improvements in INR management (as we are already in posession of the technology software will develop to support the new systems)
• better tissue prosthetics may emerge (entirely speculative)

so its all looking good for this particular disease in the future

also, being terrified is (to me) an over reaction. I've had 3 surgeries starting at about 10 ... and here I am at 52 after my third at 48 doing well enough thankyou very much. Well enough to be planning a 5 or so day cross country ski trip around a mountain inside the arctic circle (if ever I can get out of Australia)

I travel freely and use low priced INR monitoring tools to manage myself totally. I drink what I want (just polishing off a beer now, will have a wine with dinner) I eat what I want (broccoli and pork for dinner tonight) and I hunt and hike and canoe. There is so much bullshit written about warfarin / coumadine and anticoagulation I can only offer this:

to wipe it up

enjoy life and life will probably not change as much as you fear post surgery (mine hasn't after 3 surgeries)

Me in 2009, 3 years before my last surgery ( which was my third, prompted by discovery of aneyrysm in 2011)

and teaching my Australian mates who came to Finland for our wedding XC skiing

Then, me 2 years after my last surgery back in Finland again and training:

Before I joined here I'd never been "horrified" about the prospects, or even ever heard anyone around me "scared shitless" about this sort of thing. Perhaps Australians are too stupid to be .. dunno

anyway, my POINT is this: not only is there life after surgery, its can even be a better one

Best Wishes

Well I can see both sides of the waiting point of view. I was told I could wait 5 to 10 years as my aneurysm was supposedly 4.8 cm and I thought about the possibility of advancements in that time period and I also thought about robbing myself of that time with my son if I "died on the table". But the surgeon who is an expert i the field told me that he didn't see any advancements being available that would apply to my case within that time as he expected to repair the small leak and I had no stenosis so a better valve wouldn't come into play. Also not to scare any one but it turns out my aneurysm was 4.99 cm and the wall was very thin so that combined with the stress and restrictions of living with the aneurysm makes me glad I had the surgery.
As for being "scared shitless" I wouldn't say I felt that way but my main thing was the thought of not seeing my son grow up and not being there for him-he was 7 at the time of my diagnosis in 2014. As for Australians I don't think it's down to stupidity I think you're innoculated from living somewhere where everything from the insects to the reptiles to the fish to the box jellies to the fellow drunken Australians are trying to kill you ( sorry couldn't resist ). BTW which way does the toilet water flush down there since we're on the subject?

 

[pellicle]

Hi

I'd agree with you 100% that waiting beyond a point where your health is being negatively impacted is frustrating and unnecessary. But the borderlines are the difficult places to make a call.

... BTW which way does the toilet water flush down there since we're on the subject?

usually straight down ... our dunnies are different to yours and we don't have a pond that you sit above.
I was gonna film mine, but a quick youtube uncoverd an American doing "research" here in Australia

 

[cldlhd]

Thank the Lord for research like that....I knew you'd say straight down! I was looking for the usual clockwise or counter clockwise ( or anti clockwise if you're British) . It can be difficult to decide when to pull the trigger considering all the factors and obviously depending on each persons situation. The "negative impact " on my health I was worried about was being dead.
Sorry I couldn't resist the stereotype a lot of Americans have about Aussies- that you guys like to play rugby, get drunk and fight ,not necessarily in that order- but I'm sure you knew it was all meant in good fun.

 

[pellicle]

Thank the Lord for research like that....

hot off the press (if not fresh)

I knew you'd say straight down! I was looking for the usual clockwise or counter clockwise ( or anti clockwise if you're British) . It can be difficult to decide when to pull the trigger considering all the factors and obviously depending on each persons situation.

I find it obscure that here in Australia the numbnuts at the hospital just say the usual stuff about "look for blood in your stool" when you get discharged on warfarin. I got people's noses out of joint when I asked "how the hell I'd know when its under a mound of paper ... like have you ever looked down there yourself?"

shee-it man

Sorry I couldn't resist the stereotype a lot of Americans have about Aussies- that you guys like to play rugby, get drunk and fight ,not necessarily in that order- but I'm sure you knew it was all meant in good fun.

what stereotyping?? ... sounds like a regular weekend for most Queenslanders.

;-)

 

[kloned]

Having just gone through ascending aorta repair at a 5.5 and a tissue valve (cow) replacement I am here to help answer any of your questions.
Post here or message me.
I can call you also

Jeff