Ross I just typed lwq and st jude and left the rest blank and got this page http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfMAUDE/TextResults.cfm
if that helps
if that helps
Sternum thumping update
- Thread starter seth
- Start date
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seth
Well-known member
Ross, you are not putting a space between St. and Jude. It's St. Jude Medical not St.Jude Medical.
xxCAVGJ-514-00 St. Jude Medical Masters Valved Graft with Hemashield® Technology
This is the valve that you have, and I'm sure that there are thousands and thousands of them already implanted successfully.
I'm a small frame person and I can tell you that my valve (Regent) pounded and thumped for a very long time. It really felt like a whack.
It sure didn't help my already anxious nature....but time has passed and it really is not much of an issue at all anymore.
I do continue to take a low dose of Metoprolol because I don't like my heart jumping and racing.
My guess is that after another few months, and when you are more relaxed, things will simmer down.
This is the valve that you have, and I'm sure that there are thousands and thousands of them already implanted successfully.
I'm a small frame person and I can tell you that my valve (Regent) pounded and thumped for a very long time. It really felt like a whack.
It sure didn't help my already anxious nature....but time has passed and it really is not much of an issue at all anymore.
I do continue to take a low dose of Metoprolol because I don't like my heart jumping and racing.
My guess is that after another few months, and when you are more relaxed, things will simmer down.
Ross
Well-known member
Thanks. If it's man made, I know they can't be perfect. That does make a difference. Thanks.
Well so far, none of the deaths are related to the valve, but infections, clots, and suture dishencing that I've found. Deaths is as far as I've searched so far.
Same story for injuries, infections and physician errors
No malfunctions found.
In any of the cases found, the valve was not found to be the fault. Seth I'm not disputing your having a problem. I just don't want people to think that they are in some sort of mega danger by getting a mechanical valve. There are far more events listed for my CAVG-404 then yours and even then, it's all infections, dishencing and clotting. If someone finds something else. Please, by all means speak up, but I didn't find one thing indicating valve fault.
seth
Well-known member
This morning I received a phone call by a Senior Clinical Instructor at St. Jude Medical regarding the valve and the pounding against my chest. I'm surprised how quickly I was contacted by SJM after I sent them an email.
He asked questions about my condition, I told him about my symptoms, he said they are very unusual. He asked about any tests that have been done, I told him since the surgery I've had CT scans and a stress-echocardiogram, he said that it all sounded proper. I told him my surgeon thinks the pounding is caused by the hard closing of the valve, he said the valve leaflets are very light to be causing the pounding and vibration I'm describing.
We have arranged that my surgeon is to call him and the two of them will discuss my situation.
He asked questions about my condition, I told him about my symptoms, he said they are very unusual. He asked about any tests that have been done, I told him since the surgery I've had CT scans and a stress-echocardiogram, he said that it all sounded proper. I told him my surgeon thinks the pounding is caused by the hard closing of the valve, he said the valve leaflets are very light to be causing the pounding and vibration I'm describing.
We have arranged that my surgeon is to call him and the two of them will discuss my situation.
Hope some good hopeful things come out of their discussion together. Keep us posted and good luck, Seth. May God grant you the patience until you hear from them again.
May God grant you the patience until you hear from them again.
Ross
Well-known member
I've found SJM to be genuinely helpful to patients. They almost are forced to be after the silzone disaster.
Ross
Well-known member
But was it on the CAVGJ 514 00 model?
Ross
Well-known member
Hell if I know, I don't even know what that is
http://www.sjm.com/devices/device.aspx?name=SJM+Valved+Grafts&location=us&type=18
SJM Masters Valved Graft with Hemashield Technology
Ross
Well-known member
I'm not trying to railroad this thread. I'm just trying to point out that the valves have never been blamed for any of the listed incidences so that new folks don't automatically make bad judgements or assumptions. They could look this stuff up for themselves, but most people don't. Nothing more.
gustaf
Well-known member
You are not alone
You are not alone
Just wanted to know that you are not alone, and that it is not so uncommon as was indicated. I have re-constructed aortic valve and a graft, and experience thunder all day along after 14 months, and the worst when I lay down. I have learned to live with it, but do not like it. It still has about the same magnitude, but is less sharp now.
The only way to cope with it is by focusing on other things, then it fades away somewhat. Easier said than done of course. White noise doesn't help me, since it is more the physical sensation rather than the sound. I even feel it when flying. I have decided not to medicate because of the thumping, and stopped taking beta blockers, since I have other side effects like ice cold hands.
I have had many explanations for it, but none relating to a faulty valve of course. The most plausible explanation seems to be a combination of how the heart operates with a abruptly closing valve rather than a softly closing, leaking valve. This was probably made more extreme by the fact that I was in very good shape despite the valve issues before surgery. They also talk about how the heart or graft now connects to the sternum differently etc.
I would suspect that many people could experience the same, with replaced or reconstructed valves, due to effects above
::g
You are not alone
Just wanted to know that you are not alone, and that it is not so uncommon as was indicated. I have re-constructed aortic valve and a graft, and experience thunder all day along after 14 months, and the worst when I lay down. I have learned to live with it, but do not like it. It still has about the same magnitude, but is less sharp now.
The only way to cope with it is by focusing on other things, then it fades away somewhat. Easier said than done of course. White noise doesn't help me, since it is more the physical sensation rather than the sound. I even feel it when flying. I have decided not to medicate because of the thumping, and stopped taking beta blockers, since I have other side effects like ice cold hands.
I have had many explanations for it, but none relating to a faulty valve of course. The most plausible explanation seems to be a combination of how the heart operates with a abruptly closing valve rather than a softly closing, leaking valve. This was probably made more extreme by the fact that I was in very good shape despite the valve issues before surgery. They also talk about how the heart or graft now connects to the sternum differently etc.
I would suspect that many people could experience the same, with replaced or reconstructed valves, due to effects above
::g
avery582008
Member
loud valve
loud valve
Seth, sure would like to speak with you. I have the same valve and im pounding just as you are. I have questioned my surgeon about the loud clicking and he said that he has no explanation other than I'm his loudest transplant patient thus far. I keep hearing other AVR'S say that you get used to the noise after time goes by but im starting to wonder, Im 13 months post op and taking meds for anxiety as well. My MD says he has never heard anything like it and doesnt really need his stethoscope to listen to me. I was starting to think i might be the only one out here that got a really loud valve. Im not considering another surgery,although it does get to me at times when trying to do things that I use to do. My trade skills include manual labor of which im scared to push the envelope. Trying to become better educated to get a position instead of a job. Good luck to you, Glenn
loud valve
Seth, sure would like to speak with you. I have the same valve and im pounding just as you are. I have questioned my surgeon about the loud clicking and he said that he has no explanation other than I'm his loudest transplant patient thus far. I keep hearing other AVR'S say that you get used to the noise after time goes by but im starting to wonder, Im 13 months post op and taking meds for anxiety as well. My MD says he has never heard anything like it and doesnt really need his stethoscope to listen to me. I was starting to think i might be the only one out here that got a really loud valve. Im not considering another surgery,although it does get to me at times when trying to do things that I use to do. My trade skills include manual labor of which im scared to push the envelope. Trying to become better educated to get a position instead of a job. Good luck to you, Glenn
seth
Well-known member
St. Jude Medical, and my surgeon have now discussed my situation. While neither of them is sure what to do, things have taken an interesting turn.
Here is my update after talking with the SJM representative, Mr. Duckworth. He said my surgeon, Dr. Cohen, told him there is "vibration in the fluid column of the aorta that's being transfered to the sternum". My ascending aorta was replaced with a Dacron tube coming out of the artificial valve. The aorta is snapping like "a garden hose that's jerking and jumping". He said it's like a "water hammer" (which happens in pipes).
Wikipedia's description: "Water Hammer (or, more generally, fluid hammer) is a pressure surge or wave resulting when a fluid in motion is forced to stop or change direction suddenly (momentum change). Water hammer commonly occurs when a valve is closed suddenly at an end of a pipeline system, and a pressure wave propagates in the pipe." Water hammer in the plumbing of your house is a very loud banging, knocking or hammering noise and shaking vibration in the pipes. Maybe I should hire a plumber!
Once again, the issue isn't about the clicking sound of the valve, it's about the physical pounding with every beat of my heart, and vibration which can be felt by anyone touching my chest and collar bones. When I saw my surgeon, Dr. Cohen, last week, he only said he thought the pounding against the sternum was due to the hard closing of the valve and didn't say anything about the aorta being involved, but it makes a lot of sense. If this latest theory sounds familiar to those of you who have followed my situation it's because in my first post/thread this is the theory that was advanced by vprnet (Vince). We had essentially the same surgery, a Bentall Procedure (AVR with aortic graft). Vince has an On-X valve and I have a St. Jude valve but we both have similar sternum thumping. Here is some of what vprnet (Vince) posted: "I can distinctly hear and feel pounding on the breast bone develop from just above mid sternum to the collar bone." and "For what it is worth I also have my own theory." "Now the new valve is closing efficiently and when it does, my arterial system is still contracting such that the backpressure on the closed valve is greater than normal." "So what I think is happening is that when the valve closes, its like when you turn off a high pressure hose with a quick turnoff valve and the hose (in my case the Dacron) experiences a jerk in the body."
Dr. Cohen mentioned replacing the valve (something he doesn't want to do). But Mr. Duckworth told me he isn't sure that would fix the problem since it may have something to do with the configuration of the aorta or something else. It's interesting to note that Vince and myself have different valves from different manufactures and we both have sternum thumping. I asked Mr. Duckworth if he'd ever encountered this problem before, he said personally he had not but felt sure other people had. He is waiting to discuss the matter with his SJM Medical Director Dr. Frater next week. On Monday, March 9th I will meet with Dr. Cohen again, so I'll get his side of the story and probably more info on hypnosis. I'll keep you posted as things continue to develop.
Here is my update after talking with the SJM representative, Mr. Duckworth. He said my surgeon, Dr. Cohen, told him there is "vibration in the fluid column of the aorta that's being transfered to the sternum". My ascending aorta was replaced with a Dacron tube coming out of the artificial valve. The aorta is snapping like "a garden hose that's jerking and jumping". He said it's like a "water hammer" (which happens in pipes).
Wikipedia's description: "Water Hammer (or, more generally, fluid hammer) is a pressure surge or wave resulting when a fluid in motion is forced to stop or change direction suddenly (momentum change). Water hammer commonly occurs when a valve is closed suddenly at an end of a pipeline system, and a pressure wave propagates in the pipe." Water hammer in the plumbing of your house is a very loud banging, knocking or hammering noise and shaking vibration in the pipes. Maybe I should hire a plumber!
Once again, the issue isn't about the clicking sound of the valve, it's about the physical pounding with every beat of my heart, and vibration which can be felt by anyone touching my chest and collar bones. When I saw my surgeon, Dr. Cohen, last week, he only said he thought the pounding against the sternum was due to the hard closing of the valve and didn't say anything about the aorta being involved, but it makes a lot of sense. If this latest theory sounds familiar to those of you who have followed my situation it's because in my first post/thread this is the theory that was advanced by vprnet (Vince). We had essentially the same surgery, a Bentall Procedure (AVR with aortic graft). Vince has an On-X valve and I have a St. Jude valve but we both have similar sternum thumping. Here is some of what vprnet (Vince) posted: "I can distinctly hear and feel pounding on the breast bone develop from just above mid sternum to the collar bone." and "For what it is worth I also have my own theory." "Now the new valve is closing efficiently and when it does, my arterial system is still contracting such that the backpressure on the closed valve is greater than normal." "So what I think is happening is that when the valve closes, its like when you turn off a high pressure hose with a quick turnoff valve and the hose (in my case the Dacron) experiences a jerk in the body."
Dr. Cohen mentioned replacing the valve (something he doesn't want to do). But Mr. Duckworth told me he isn't sure that would fix the problem since it may have something to do with the configuration of the aorta or something else. It's interesting to note that Vince and myself have different valves from different manufactures and we both have sternum thumping. I asked Mr. Duckworth if he'd ever encountered this problem before, he said personally he had not but felt sure other people had. He is waiting to discuss the matter with his SJM Medical Director Dr. Frater next week. On Monday, March 9th I will meet with Dr. Cohen again, so I'll get his side of the story and probably more info on hypnosis. I'll keep you posted as things continue to develop.
I'm sorry you are going thru this, I can't imagine how frustrating it must be. I have a couple questions if you don't mind.and if you don't want to answer that's fine, I'm really just typing as I'm thinking this thu. IF Dr Cohen was going to replace the valve, did he say what his thoughts are on what he would replace it with? Does he think a tissue might not have the same issue? Which I could see since I don't believe they close as hard. This has been interesting to me since you first mentioned it, because Justin has a dacron conduit that runs right underneath his sternum, he actually has a section of conduit then his bovine valve then another section of conduit, so that the valve wasn't right under his sternum and risk getting squished (the first section of his conduit DID get squished and needed replaced) He doesn't have the banging but you can usually see his heart beating, especially if he is laying down, but his is his pulmonary valve so the force of the blood going thru the conduits and valves is less. Justin's heart is "very forward" in his chest and I was wonderring if anyone said your was too, or if that could play into your problem, since alot of people get the AVR+graft and I don't remember hearing about this before, so wonderring why you get to be "special" (I always tell Justin when it comes to his heart special is not good, boring is) I hope someone can come up with a solution to make your life more pleasant.
gustaf
Well-known member
I wish you good luck with the meeting with your doctor on Monday. The thumping is something I think I can learn to live with, *if* I could be sure there is nothing dangerous related to it. This is what everyone say, but I do not always feel so assured with it, especially not when trying to get to sleep. This is probably a bit exaggerated by my history of my aorta dissection and the very close call emergency surgery.
The water hammer is a good analogy. It does sound and react a bit like my old dishwasher and when the pump stopped, and the plumbing rattled against the wall (I have an old house). The new dishwasher closes a lot smoother however, so there's where the analogy ends...
In my case, I wouldn't want to risk another surgery in scar tissue just because of this. A question is if there is something that can be done in the pumping characteristics of the heart, if some medication or perhaps physical therapy could change the "pumping mechanics" of the heart.
I have a vague hope that my next procedure in a month to fix a remaining contraction of the aorta could soften it somewhat by lowering the overall blood pressure. Because of this (and maybe other things) it is hard to get below 140/75 in blood pressure, which probably affects the magnitude of the thumping.
BR
::gustaf
The water hammer is a good analogy. It does sound and react a bit like my old dishwasher and when the pump stopped, and the plumbing rattled against the wall (I have an old house). The new dishwasher closes a lot smoother however, so there's where the analogy ends...
In my case, I wouldn't want to risk another surgery in scar tissue just because of this. A question is if there is something that can be done in the pumping characteristics of the heart, if some medication or perhaps physical therapy could change the "pumping mechanics" of the heart.
I have a vague hope that my next procedure in a month to fix a remaining contraction of the aorta could soften it somewhat by lowering the overall blood pressure. Because of this (and maybe other things) it is hard to get below 140/75 in blood pressure, which probably affects the magnitude of the thumping.
BR
::gustaf
aussigal
Well-known member
Oh gosh Seth...I have been slack. I am so sorry...I completely forgot to go back and get that CT pic of my valve with measurements. I need to download that program that lets you take a screenshot of whats on your screen as I wasnt able to copy the image any of the ways I tried. I can tell you that my measurements are within 1 cm of yours which is pretty normal. I too get the same shudder but I dont think its quite as annoying as yours although I have 3 teenage sons at home so our house can be rather noisy which may help me block it out.
I personally dont think there is not much that can be done as our Dacron aortas are not like our natural tissue that has been replaced so the acousitcs etc will always be different...I am sure I can flex/bend my dacron tube when I twist wierdly 'cos I can hear and feel a funny thump at times.
I personally dont think there is not much that can be done as our Dacron aortas are not like our natural tissue that has been replaced so the acousitcs etc will always be different...I am sure I can flex/bend my dacron tube when I twist wierdly 'cos I can hear and feel a funny thump at times.
seth
Well-known member
3-3-2009 Update
3-3-2009 Update
I met with my surgeon today, here's the update:
He said he talked with St. Jude and they were not particularly helpful, that they are trying to say their valve isn't involved in causing this problem because the leaflets are very light. He didn't care for the "water hammer" terminology but he agreed that the aorta is a part of the pounding problem. He explained that the valve, the root and the ascending aorta is all one unit sitting down in the aortic annulus. His guess is that the whole unit is vibrating. He's seen something similar but not so dramatic in a couple of other patients. In my case he thinks it's caused by the force of the blood closing the valve and that vibrating the whole valve conduit. He said the valve is working fine, there's no leaking around it, but it's shaking my chest. So the options are to replace it ? which he doesn't want me to do ? or figure out a way to make me more comfortable with it and see what happens over time. He thinks before considering surgery we should exhaust every possibility and he recommends trying hypnosis.
I asked him about tissue valves and multiple surgeries. He said if you just have a tissue valve and don't have an aortic root replacement it's not a big deal because you just go back in there open the aorta and replace the valve. But since I've already had a Bentall Procedure, to switch to a tissue valve would be another big operation. The valve and the whole valve conduit - the entire aortic root, the ascending aorta would all have to be replaced and the coronary arteries would have to be re-implanted a second time. He said that's a whole different ball game when it comes to scar tissue and the risk of injuring the coronary arteries and stuff like that. He said it's rare that a second surgery would be done to replace a mechanical valve with a tissue valve, he's heard of it being done occasionally but he'd hate to have to do that surgery. He's done re-do root operations but not for that reason, and he has never taken a St. Jude valve out because someone didn't like it.
I told him I'm discouraged because my goal has been 1. Find out what is causing the problem. 2. Determine what is the solution to the problem. 3. Apply the solution and solve the problem. He said he thinks the solution is going to be alternative therapy. Based on the reading he's done of medical literature he is optimistic the hypnotherapy is going to help.
Lyn, a tissue valve doesn't sound like an option for me at this point. My heart isn't forward in my chest. I don't know why I get to be "special" either, but I am finding there are other people on this site who are having similar pounding issues when they have also had the valve conduit replaced (a Dacron graft aorta).
gustaf, I really hope things improve for you and that your next procedure helps in some way. Keep me posted. I sent you a private message so be sure to check for that.
aussigal, my surgeon is convinced that my valve, while it may be closer to the sternum than many other people's, is not unusually close enough to be the cause of the problem. You could be right that with our Dacron aortas there may not be anything that can be done at this point.
3-3-2009 Update
I met with my surgeon today, here's the update:
He said he talked with St. Jude and they were not particularly helpful, that they are trying to say their valve isn't involved in causing this problem because the leaflets are very light. He didn't care for the "water hammer" terminology but he agreed that the aorta is a part of the pounding problem. He explained that the valve, the root and the ascending aorta is all one unit sitting down in the aortic annulus. His guess is that the whole unit is vibrating. He's seen something similar but not so dramatic in a couple of other patients. In my case he thinks it's caused by the force of the blood closing the valve and that vibrating the whole valve conduit. He said the valve is working fine, there's no leaking around it, but it's shaking my chest. So the options are to replace it ? which he doesn't want me to do ? or figure out a way to make me more comfortable with it and see what happens over time. He thinks before considering surgery we should exhaust every possibility and he recommends trying hypnosis.
I asked him about tissue valves and multiple surgeries. He said if you just have a tissue valve and don't have an aortic root replacement it's not a big deal because you just go back in there open the aorta and replace the valve. But since I've already had a Bentall Procedure, to switch to a tissue valve would be another big operation. The valve and the whole valve conduit - the entire aortic root, the ascending aorta would all have to be replaced and the coronary arteries would have to be re-implanted a second time. He said that's a whole different ball game when it comes to scar tissue and the risk of injuring the coronary arteries and stuff like that. He said it's rare that a second surgery would be done to replace a mechanical valve with a tissue valve, he's heard of it being done occasionally but he'd hate to have to do that surgery. He's done re-do root operations but not for that reason, and he has never taken a St. Jude valve out because someone didn't like it.
I told him I'm discouraged because my goal has been 1. Find out what is causing the problem. 2. Determine what is the solution to the problem. 3. Apply the solution and solve the problem. He said he thinks the solution is going to be alternative therapy. Based on the reading he's done of medical literature he is optimistic the hypnotherapy is going to help.
Lyn, a tissue valve doesn't sound like an option for me at this point. My heart isn't forward in my chest. I don't know why I get to be "special" either, but I am finding there are other people on this site who are having similar pounding issues when they have also had the valve conduit replaced (a Dacron graft aorta).
gustaf, I really hope things improve for you and that your next procedure helps in some way. Keep me posted. I sent you a private message so be sure to check for that.
aussigal, my surgeon is convinced that my valve, while it may be closer to the sternum than many other people's, is not unusually close enough to be the cause of the problem. You could be right that with our Dacron aortas there may not be anything that can be done at this point.
Faye
Well-known member
Seth - Please let us know if you try hypnotherapy and if it helps!
abbanabba
Well-known member
Hey Seth, sorry the appointment with your surgeon didn't come up with any real solution for you. It's obviously a fairly complex surgical fix for something which isn't a life-threatening situation and I can understand his reluctance to reoperate. Still, I can also understand your sheer frustration and can't imagine how difficult it must be to live with day-to-day.
I guess it would be worth giving the hypnosis a shot... if there's the remotest chance it may work and give you some relief without further surgery, then I guess there's nothing to lose. It seems like a pretty off-the-wall suggestion, but then again some people respond to it rather well, so who knows.
Either way I hope you find some kind of a solution.
A : )
I guess it would be worth giving the hypnosis a shot... if there's the remotest chance it may work and give you some relief without further surgery, then I guess there's nothing to lose. It seems like a pretty off-the-wall suggestion, but then again some people respond to it rather well, so who knows.
Either way I hope you find some kind of a solution.
A : )
Gail in Ca
Well-known member
Seth,
I don't know how close my new valve is to my sternum, but I do feel it is less noisy than the one I had for 8.5yrs, a carbomedic valve. My first valve had such a thump, it was like having a bass drum in my chest. I am thin as well, and it took me over a yr to get used to the sound at night.
You might try looking into having your wires removed. I did, about 8 mos after surgery, mainly because they bugged me and rubbed me.
I am too swollen from my latest surgery (3rd) too tell if I need my wires removed this time. I do know that unless there is a defect, you wouldn't want a 3rd surgery. It took my surgeons team 4 hours just to get thru the scar tissue of the sternum and start the actual surgery!! That is the risky part.
My cardiologist could hear my old valve from a foot away. He couldn't hear valves in average to large patients from that far.
St Judes and Carbomedic are the same company now.
I feel for you and hope you get the answers that you seek from your dr or another opinion.
Gail
I don't know how close my new valve is to my sternum, but I do feel it is less noisy than the one I had for 8.5yrs, a carbomedic valve. My first valve had such a thump, it was like having a bass drum in my chest. I am thin as well, and it took me over a yr to get used to the sound at night.
You might try looking into having your wires removed. I did, about 8 mos after surgery, mainly because they bugged me and rubbed me.
I am too swollen from my latest surgery (3rd) too tell if I need my wires removed this time. I do know that unless there is a defect, you wouldn't want a 3rd surgery. It took my surgeons team 4 hours just to get thru the scar tissue of the sternum and start the actual surgery!! That is the risky part.
My cardiologist could hear my old valve from a foot away. He couldn't hear valves in average to large patients from that far.
St Judes and Carbomedic are the same company now.
I feel for you and hope you get the answers that you seek from your dr or another opinion.
Gail
