Bob ... you are in my prayers and Chimps have a lot of pull with the Man upstairs, I guess that’s because of our comical, buffoon type behavior
.... hang tough...
Tom
.... hang tough...Tom
Abnormal Echo
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Thanks, Cooker, old friend, and thanks John, I will take that case of cold, Rocky Mountain-brewed Coors Light!
Okay my CAT also showed I have a touch of pneumonia ( yes, I am high maintenance ) but I have a GREAT GP -- and everything's going to work out. To make a long story short, he is ordering another CAT in 2 1/2 months, ostensibly to check on my lungs but that will also check on the aortic aneurysm. I had been fretting that the cardio's plan for a repeat echo in 6 months was a little tardy, given the 5.1 cm and uncertainty as to how fast it is enlarging. So the January CAT will give an earlier look.
Meanwhile, I am going to get everything sent to my surgeon in Northern Virginia and seek his opinion.
Okay, enough about me for a while, I appreciate so much all the prayers and thoughts but there are many others here with more pressing problems.
Meanwhile, remember also mmarshall, who seems to be in the same boat as me, and is having an echo today with possibly a CAT to follow.
Okay my CAT also showed I have a touch of pneumonia ( yes, I am high maintenance
) but I have a GREAT GP -- and everything's going to work out. To make a long story short, he is ordering another CAT in 2 1/2 months, ostensibly to check on my lungs but that will also check on the aortic aneurysm. I had been fretting that the cardio's plan for a repeat echo in 6 months was a little tardy, given the 5.1 cm and uncertainty as to how fast it is enlarging. So the January CAT will give an earlier look.Meanwhile, I am going to get everything sent to my surgeon in Northern Virginia and seek his opinion.
Okay, enough about me for a while, I appreciate so much all the prayers and thoughts but there are many others here with more pressing problems.
Meanwhile, remember also mmarshall, who seems to be in the same boat as me, and is having an echo today with possibly a CAT to follow.
mmarshall
Well-known member
Thanks, Cooker, old friend, and thanks John, I will take that case of cold, Rocky Mountain-brewed Coors Light!
Okay my CAT also showed I have a touch of pneumonia ( yes, I am high maintenance
Meanwhile, I am going to get everything sent to my surgeon in Northern Virginia and seek his opinion.
Okay, enough about me for a while, I appreciate so much all the prayers and thoughts but there are many others here with more pressing problems.
Meanwhile, remember also mmarshall, who seems to be in the same boat as me, and is having an echo today with possibly a CAT to follow.
Thanks Bob-o,
I am getting my echo in a couple of hours and hope to have the results by Wed. With the size being 4.4 in June of last year and then 4.9 last Dec, I think I should have a good read on how fast it is enlarging...for better or worse.
I plan on doing the same if it is at the 4.9 or larger though...I will be getting in contact with my surgeon to go over it. I know I have not been the only one that he has put this type of valve into so I would like to pick his brain about that since you and I are in the same boat. I would also like to get his opinion on what should be done to fix/correct it...full replacement, stent the aorta, etc. I read that with a BAV, you should monitor the ascending aorta between 4.0 and 5.0, and a normal AV should be monitored between 5.0 and 6.0...but I think we all know that is very debatable. Just wonder where we would fall into.
Continue lifting the Coors Light and I will keep up my end with Miller Lite.
Sounds like we are roughly in the same place. Do let us know when you have those results.
I talked to my surgeon's office this afternoon (one of the physician's assistants from back in '05) and she was super-friendly and told me to send a copy of the reports plus the CAT on a disk, and Dr. Speir would be glad to analyze it. So I am going to round that up Monday and get it on its way. I was relieved to get this response.
Meanwhile, no heavier lifting than a Miller or a Coors. We're going to come through this fine -- just have to keep on it.
I talked to my surgeon's office this afternoon (one of the physician's assistants from back in '05) and she was super-friendly and told me to send a copy of the reports plus the CAT on a disk, and Dr. Speir would be glad to analyze it. So I am going to round that up Monday and get it on its way. I was relieved to get this response.
Meanwhile, no heavier lifting than a Miller or a Coors.
We're going to come through this fine -- just have to keep on it.
Bob, it is reassuring when all involved are calm and receptive. You will be fine.
Man I am really sorry to hear this SB. Just wanting you to know I was thinking of you. Hope you get a good second opinion from your original surgeon. GOOD LUCK!
Rhena
Rhena
Well, Bob, you seem to have moved out of the 'boring' category...a variation of the curse 'may you live in interesting times' could be 'may you be interesting to surgeons'.
I've been following this distressing development of yours for not entirely altruistic reasons: we share the same valve problem, same valve mfr, surgeon, approximate age, and when i first started reading here, same location. So I was motivated to check the CVTSA site to figure out who their aneurysm guy was and found this:
http://www.cvtsa.com/CardiacPatientTestimonials/A-438-207.html
I'm glad (but not surprised) by the encouragement you had from the NP, and truly hope you get satisfactory information soon.
Very best wishes,
Debby
I've been following this distressing development of yours for not entirely altruistic reasons: we share the same valve problem, same valve mfr, surgeon, approximate age, and when i first started reading here, same location. So I was motivated to check the CVTSA site to figure out who their aneurysm guy was and found this:
http://www.cvtsa.com/CardiacPatientTestimonials/A-438-207.html
I'm glad (but not surprised) by the encouragement you had from the NP, and truly hope you get satisfactory information soon.
Very best wishes,
Debby
I have a dumb question. I know that bicuspid aortic valve (BAV) means having two leaflets instead of three on your valve, and it's something you are born with. I don't recall ever being told BAV applies to me, but re-reading my surgical report of 2005, it says, "there was a 5.5 cm aortic root and ascending thoracic aortic aneurysm with the dilation extending through the arch at about 4 cm. there was a bicuspid aortic valve with fusion of the non- and right cusp with heavily calcified and retracted monocusp...." Later I read references to the left, right, and non (meaning middle???) cusps.
Was wondering: does this mean I wasn't BAV at birth, but instead had two of the leaflets fuse later in life? And now that I have had the replacement, am I tricuspid?
Was just wondering where I fit in the rough scale as to when to feel really in danger from a new anuerysm. I was chatting with a tech today who offered that 6.0 was most likely my serious point for surgical intervention. Sometimes techs will open up when others won't. Don't know if she's right or not. Still grasping at straws.
Definitely life is no longer boring! Just thought I could fade into tableau of old man and dog walking the beaches, and instead I may be a candidate for a paragraph or two in a surgeon's journal.
Thanks for posting this, Debby -- fascinating incident. Bless Dr. Speir and his associates. That sounds like a promising new development. Offers hope.
Sorry, I did think your were BAV. Since you are facing aneurysm already, the 'tissue issue' may be moot, but the reason you might want to know if you had been bicuspid is because of the possible tissue weakness some BAVs have.
I think imaging improved over time, so some of us with aortic murmurs didn't know about the bicuspid condition until later in life. I got an mvp diagnosis in the early 1980's.
What you are now is leafleted, not cusped.
MMarshal, I wish you good outcome too!
I think imaging improved over time, so some of us with aortic murmurs didn't know about the bicuspid condition until later in life. I got an mvp diagnosis in the early 1980's.
What you are now is leafleted, not cusped.
MMarshal, I wish you good outcome too!
Not a dumb question. It's a very complicated question/answer because evidently they (the "experts") aren't absolutely in certain agreement. Yet. And there is so much more to know, that they need to learn, about bicuspid-related issues.
You certainly could have been born with those two leaflets fused together.
My hunch is that there are a great many degrees of severity possibly related within the entire bicuspid gamut.
Even though your current valve replacement has the three leaflets, some of the other possible connective tissue issues, at least sometimes related to bicuspids, may be coming into further play.
I don't know if your tech is right, about the 6.0 information. But it is contrary to much of what I have read here.
But, since you always try to look on the positive, one of the most delightful plusses about bicuspids is that we usually don't have clogged arteries, and rarely need bypasses. I hope some expert is looking into that. Maybe there is some wonderful information just waiting to be discovered, related to the "whys" of that interesting aspect.
I hope you will walk your dog on the beach tomorrow morning and joyfully feel the sea spray in your face and the wind in your hair. You have my best wishes
.
Very informative post, Lily. Indeed, I am blessed to not have clogged arteries and have needed no bypasses. Guess I need to start reading the BAV/connective tissue forum more thoroughly. I had always thought it didn't apply to me and usually just skim-read it.
I've not heard a 6.0 as being acceptable for anyone before. I'm tricuspid (well, I was), and I would go through this surgery again before my root got to 6.0.
Having two leaflets formed permanently fused is a fairly common form of bicuspid arrangement. Usually one of the the leaflets is partially or imperfectly formed, and grows into its neighbor as one leaflet with a visible seam (or never completely separates). The fusion turns out to be a generally good thing, allowing the heart to perform in a basically normal manner, at least until there is calcification or regurgitation (if ever).
This is different from a tricuspid valve leaflet fusion, where full leaflets become glued together (partially overlapping) from calcification after the valve develops other problems.
Again, it would be a good thing for everyone to know whether this is related to the valve itself or the technique (i.e., is the anuerysm in the valve body or above the valve in the aorta; and if it happens above the valve, is it endemic to this valve type, meaning that a special technique should be employed to successfully avoid this happening later, or that the level of likelihood of a later aneurysm should be part of the patient's decision).
Very similar problems have been encountered by people who had just the valve replaced (with all types and brands of valve), and we should consider the possibility of a larger picture (beyond one valve) of this issue that you're all living with, so we could bring attention to it.
If we could spot a trend or a hidden problem and help others avoid or be aware of it, it would seem a good thing.
My thoughts are with you all. I have just had surgery redone for what I believe was a faulty valve that should never have passed inspection, so I am certainly in symapthy with your issue.
Best wishes,
Having two leaflets formed permanently fused is a fairly common form of bicuspid arrangement. Usually one of the the leaflets is partially or imperfectly formed, and grows into its neighbor as one leaflet with a visible seam (or never completely separates). The fusion turns out to be a generally good thing, allowing the heart to perform in a basically normal manner, at least until there is calcification or regurgitation (if ever).
This is different from a tricuspid valve leaflet fusion, where full leaflets become glued together (partially overlapping) from calcification after the valve develops other problems.
Again, it would be a good thing for everyone to know whether this is related to the valve itself or the technique (i.e., is the anuerysm in the valve body or above the valve in the aorta; and if it happens above the valve, is it endemic to this valve type, meaning that a special technique should be employed to successfully avoid this happening later, or that the level of likelihood of a later aneurysm should be part of the patient's decision).
Very similar problems have been encountered by people who had just the valve replaced (with all types and brands of valve), and we should consider the possibility of a larger picture (beyond one valve) of this issue that you're all living with, so we could bring attention to it.
If we could spot a trend or a hidden problem and help others avoid or be aware of it, it would seem a good thing.
My thoughts are with you all. I have just had surgery redone for what I believe was a faulty valve that should never have passed inspection, so I am certainly in symapthy with your issue.
Best wishes,
I'm so sorry to hear about the results, Superbob. I would feel uncomfortable with a six month follow-up. My aneurysm is only 4.5 and I would prefer six-month follow ups. My aneurysm never showed up on the echos anyway - only found on the CT scan.
Still sending up prayers and good vibes for you. This has got to be stressful and frustrating. Keep us posted.
Interesting about how people with BAV usually don't a problem with clogged arteries. The cath done prior to my operation showed that mine are as clear as a bell. Scary thing is that the night before my surgery a nurse came in to measure my veins for a bypass!! I said, "Um, aren't I scheduled for an aortic valve replacement?" She finally got it straight. : )
mmarshall - Best of wishes to you as well and keep us posted.
Take care everyone.
Cheers,
Michelle
Still sending up prayers and good vibes for you. This has got to be stressful and frustrating. Keep us posted.
Interesting about how people with BAV usually don't a problem with clogged arteries. The cath done prior to my operation showed that mine are as clear as a bell. Scary thing is that the night before my surgery a nurse came in to measure my veins for a bypass!! I said, "Um, aren't I scheduled for an aortic valve replacement?" She finally got it straight. : )
mmarshall - Best of wishes to you as well and keep us posted.
Take care everyone.
Cheers,
Michelle
Dear Coors lite and Miller lite
I have nothing to add except you are both in my thoughts and in my prayers
I have nothing to add except you are both in my thoughts and in my prayers
mmarshall
Well-known member
Well I had my echo yesterday and the tech that always does my echo wanted to get the cardio that does the evaluations to come in and oversee it while I was there. We were talking about why I was getting the echo and he wanted to make sure it was done right. It turns out that it was a misread and the person that did the evaluation last time was measuring it incorrectly. The cardio came in and explaned to myself and the tech that since the root was replced as well, it is thicker than a native root so he said that the measurement needed to be taken on the inside of the wall and not the outside due to the replacement root being much thicker. There was also a shadow that was causing the image to be either a 4.4 or 4.7 so the cardio had me lay a different way and told the tech to take a certain angle that made the image pretty clear. Turns out it measured 3.98. I don't have the final readings yet but having the cardio tell me that the root is not dialated was all I needed to hear. Never had a cardio come in and oversee an echo on me before and I trust the tech because he is the same guy that has been doing my echos since I had surgery. It was pretty interesting and nice to say the least.
Bob, I have been looking at Medtronics website and they do have some PDF documents online that go over the different methods of how our valve/root is implanted. I say this because after Tobago Bob brought that up, I never thought that this type of valve can have the option of not having the root used. I would ask my surgeon if he used the full root when he put the valve in. I went over that during the echo and my full root was replaced.
Also, about the BAV question you had, mine was a BAV that I was born with where two of my leaflets barely difused at birth and they never changed. So I went 31 years with a 2 1/4 valve.
I will continue to look into this and I am going to try to get my surgeon on the phone to ask him if he has had any reports of the root enlarging. I will pass the info to ya when I find out and will also let you know what the final reading are on my echo when I get them during the week.
A big thank you to everyone for the support for Bob and I. I will now turn over my full support to Bob and hope/pray for the best.
Bob, I have been looking at Medtronics website and they do have some PDF documents online that go over the different methods of how our valve/root is implanted. I say this because after Tobago Bob brought that up, I never thought that this type of valve can have the option of not having the root used. I would ask my surgeon if he used the full root when he put the valve in. I went over that during the echo and my full root was replaced.
Also, about the BAV question you had, mine was a BAV that I was born with where two of my leaflets barely difused at birth and they never changed. So I went 31 years with a 2 1/4 valve.
I will continue to look into this and I am going to try to get my surgeon on the phone to ask him if he has had any reports of the root enlarging. I will pass the info to ya when I find out and will also let you know what the final reading are on my echo when I get them during the week.
A big thank you to everyone for the support for Bob and I. I will now turn over my full support to Bob and hope/pray for the best.
MM, This is good news for you that we are glad to share, and good news all around as we are obviously hoping that this isn't happening a lot to any particular valve. One less is one less.
SuperBob, what can I say? It's hard to have to go through it again so soon, both the waiting and eventually the OHS. It's frustrating, because it seems like you deserved a better downtime between these incidents.
The initial report indicated that you have a dilated (mildly enlarged) aorta up through the arch (which is where all the major head, heart, and body-feeding blood vessels originate). That would be past the root, and would not have been addressed by the valve-plus-root in your prior surgery. It would be good to get a status on that area as well. It does look like you and Ross may share some aneurystic tendencies.
You have the right attitude and fortitude. And you will do all right when the time comes for it, like it or not. Until then, you are in my thoughts.
Very best wishes,
SuperBob, what can I say? It's hard to have to go through it again so soon, both the waiting and eventually the OHS. It's frustrating, because it seems like you deserved a better downtime between these incidents.
The initial report indicated that you have a dilated (mildly enlarged) aorta up through the arch (which is where all the major head, heart, and body-feeding blood vessels originate). That would be past the root, and would not have been addressed by the valve-plus-root in your prior surgery. It would be good to get a status on that area as well. It does look like you and Ross may share some aneurystic tendencies.
You have the right attitude and fortitude. And you will do all right when the time comes for it, like it or not. Until then, you are in my thoughts.
Very best wishes,
B
Bridgette
Bob, I'm thinking of you and wish you the best outcome!
It really sucks that people end up having ongoing problems and need further procedures done !!!
Good luck.
Bridgette
It really sucks that people end up having ongoing problems and need further procedures done !!!
Good luck.
Bridgette
MM, that is great news! -- so glad to hear it!
I understand I did have the full root replacement, but judging from what Bob H says, that wouldn't have covered all the way up to the arch. So will gather everything up and Fed Ex it to the surgeon Monday to see what his read on it is.
Trying not to whine and to keep a positive attitude, I do hope to shake the touch of pneumonia I currently have before thinking too hard how to proceed. And here I thought my primary old-age problems for a while would be spinal stenosis and two knees that are candidates for replacement, Sometimes you wonder if the fight is worth it.
I understand I did have the full root replacement, but judging from what Bob H says, that wouldn't have covered all the way up to the arch. So will gather everything up and Fed Ex it to the surgeon Monday to see what his read on it is.
Trying not to whine and to keep a positive attitude, I do hope to shake the touch of pneumonia I currently have before thinking too hard how to proceed. And here I thought my primary old-age problems for a while would be spinal stenosis and two knees that are candidates for replacement, Sometimes you wonder if the fight is worth it.
