seth
Well-known member
I made the trip to the Mayo Clinic out of hope and desperation due to my pounding-vibration issue. I was there two days. Day one I had a thorough echocardiogram and met with cardiologist Dr. Hector Michelena. Day two I met with surgeon Dr. Thoralf Sundt. The good news is that tests show my aortic valve and conduit are functioning well. The bad news is Mayo didn't have many answers and even less help to offer.
• Regarding my chest pain – No answer, just speculation it could be from a cracked costal cartilage in the ribs (13 months post surgery?).
• Regarding my irregular heart rhythm that I've developed – Based on my description and playing a tape recording of my heart when it was acting-up, it's probably "bigeminy" possibly originating from the ventricle where I was cut during surgery. Was told it's nothing to be concerned about.
• Regarding the pounding-vibration issue – The only suggestion by both doctors was using a beta blocker (I've been on beta blockers since the surgery).
Cardiologist Hector Michelena physically examined me and said the pounding-vibration was certainly "excessive". In his report he wrote: "There is no question that this is a prominent closing sound and associated vibration." "He is thin and this vibration is transmitted through the sternum up the clavicles as I have felt. Indeed, this is one of the loudest aortic valves that I have heard" But he told me he has seen vibration in other patients and did not consider it the result of a malfunction. I asked if he had seen it as bad as I have it – being able to feel it in a patient's clavicles? He replied he had never touched a patient's clavicles before. Dr. Michelena personally reviewed the echocardiogram (looks good). During the consultation he had a radiologist review my CT scan (also looks good) there's no sign of scar tissue between the valve and the sternum to transmit vibration. His report states "I do not find an anatomic abnormality by echo or CT that could explain this or that could be corrected surgically." He said the valve is functioning OK. Of course I said from my perspective I dissagreed with that assessment. He said while the valve may be functioning properly, the vibration is "not typical". I asked him about the possibility of a "water hammer effect" being present and he said there is something described as a "water hammer pulse" which happens when there is severe leakage of the aortic valve, but said I don't have leakage. Which seemed to rule it out but then in his report he wrote: "the best treatment for this is to advance his beta blockers and try to reduce the vigorous ventricular contraction and thereby the degree of the water hammer pulse that occurs with the closing of the valve." He said the vibration isn't going to cause wear and tear over time. Ultimately he tried to play the vibration down and said "life is all about perception." He recommended I see a psychiatrist for anxiety. He was very pleased that I was scheduled to meet with Dr. Sundt the next day. I asked him about homografts and he said they don't do many of them and primarily in cases of valve infection because a homograft is the least susceptible to infection.
Surgeon Dr. Thoralf Sundt covered more of the issues I had questions about. Unfortunately he couldn't offer anything new and suggested the beta blocker approach as well. After physically examining me Dr. Sundt said "I’ll grant you that’s the most prominent vibration with a valve closure I’ve ever felt." He also said, "I think the valve is functioning fine, as designed. I think that the vibration happens when the leaflets close. I think you’re right, it never stops because hopefully your heart doesn’t stop, And I think you’re feeling it more because you’re skinny and it’s a big valve. I don’t think anybody did anything wrong, I don’t think the valve is designed wrong, I don’t think the valve is functioning abnormally. A guy your age I would have put in a mechanical valve too. We always put in the biggest valve we can fit because that gives you the best hemodynamics. But its a... yeah, I’m impressed by how much that shakes, how much that vibrates with every heart beat." He thinks the vibration is caused when the aortic valve leaflets slam shut with the backward pressure of blood after each heart beat, and is made worse because I'm thin and have a big valve installed (27mm, is that big?). When I brought up the Dacron conduit and a water hammer effect he agreed that my artificial aorta doesn't have elasticity to absorb the force of blood ejected from the heart the way a natural aorta does, so it could be part of the vibration issue. He said the vibration is caused by the valve and he disagrees with St. Jude Medical who told me the valve isn't involved in the vibration. Personally I think it may be a combination of the valve and the stiff artificial conduit. There's no medical reason to risk another surgery and take out a valved-conduit that is functioning fine. Of course with every heartbeat I don't feel it's functioning "fine" and anyone who touches my chest can form their own opinion but they don't have to live with it. All the same he has corroborated what my surgeon's opinions are. He also verified what my surgeon had told me, that they can't just replace the valve itself. A re-do surgery would require that the whole valve, root, and ascending aorta would have to be replaced and the coronaries reattached again. That's because of the nature of the valved-conduit that was installed. It would be a complete re-do with a 5-10% mortality risk for the surgery. Plus there's no guarantee the results would be any better, and of course things could be made worse in many ways and other problems created. I was surprised he said I may have had some vibration issues even if I'd selected a tissue valve instead of mechanical, though not as much. All the other doctors have said they didn't think I'd be having this problem with a tissue valve.
Dr. Sundt said several times he thinks the course of treatment should be to take beta blockers and reduce the force of the heart beat, which makes sense in theory, but I've been taking beta blockers at high dose since the surgery, that's nothing new. I'm at 150mg Metoprolol now and will probably try 200mg next. I felt he was up-front with me, he acknowledged my vibration phenomenon is the worst he's ever seen... which is something other doctors minimize because they can't change it. He suggested I should see a psychiatrist for anxiety.
I also asked him about mechanical resonance, homografts and the design of artificial aortas.
When I first got back from Mayo I was really depressed. Sometimes I get angry and discouraged that I felt much better before the surgery than I do after it. What makes it worse is clearly this isn't something that can heal or something that I can "recover" from. It's not a bad experience that will end with a cure on the other side. There's only constant vibration. It's hard to accept or have peace with because it never leaves me alone or gives me a break, so there are times when it really gets to me. So how do I move forward? I've got what I've got, now what? What do I do? I don't know, but I'm pushing to have this problem solved for future patients.
As some of you know many months ago I contacted Saint Jude Medical about this vibration issue I'm having with their valved-conduit and put them in touch and my surgeon Dr. Cohen (USC). Because I kept pursuing this problem with Dr. Cohen, and created a survey here on VR.com and presented the results showing him other patients have this problem too. He proposed to study this vibration issue with Mory Gharib (Chairman of the Department of Bioengineering at Cal Tech). Dr. Gharib has a lot of experience testing heart valves in an artificial aortic flow loop. The idea is to put various size St. Jude valve conduits in the loop and also compare St. Jude valves with "aortas" of various elasticity in order to shed more light on the vibration phenomenon. They will also be putting digital vibrometers on patients like me to try to measure the "phenomena". Dr. Cohen wrote to our contact at Saint Jude Medical, told him I knew of other patients with this problem, described the proposed study at Cal Tech and asked if SJM was interested in donating valves and conduits. SJM said they were interested and would participate but they never did send the materials. That was back in April, no parts means no research.
But some good has come from my visit to the Mayo Clinic. After my consultation there with Dr. Sundt I wrote to him requesting that he contact SJM about my case and to ask them to contribute to the proposed Cal Tech study. He forwarded my e-mail to SJM with a note about my valve and provided his follow-up report to them. They responded saying they would provide the materials. Today Dr. Cohen received a package with some valves and conduits, which is progress! But there were no "valved-conduits" (which is the all-in-one piece I have installed). He thinks that to do this correctly we need valved-conduits in all sizes as well as valves in the same sizes and is asking St. Jude if he needs to apply for a grant to do this. So some progress has been made but he doesn't have what he needs yet.
Dr. Cohen thinks we will learn a lot from this research, though he's concerned I "may not benefit as much as we would like" (i.e. no solution for me). I know whatever is learned form this study probably won't benefit me personally, but I'm still very excited about it. The study matters to me personally because I want to do everything I can to prevent other people in the future from enduring what I have. At least there will be some purpose, some good that comes out of it. I believe this will happen through awareness of the issue and research and development and I'm very grateful to Dr. Cohen for his efforts so far on this issue and I intend to do everything I can as an advocate.
• Regarding my chest pain – No answer, just speculation it could be from a cracked costal cartilage in the ribs (13 months post surgery?).
• Regarding my irregular heart rhythm that I've developed – Based on my description and playing a tape recording of my heart when it was acting-up, it's probably "bigeminy" possibly originating from the ventricle where I was cut during surgery. Was told it's nothing to be concerned about.
• Regarding the pounding-vibration issue – The only suggestion by both doctors was using a beta blocker (I've been on beta blockers since the surgery).
Cardiologist Hector Michelena physically examined me and said the pounding-vibration was certainly "excessive". In his report he wrote: "There is no question that this is a prominent closing sound and associated vibration." "He is thin and this vibration is transmitted through the sternum up the clavicles as I have felt. Indeed, this is one of the loudest aortic valves that I have heard" But he told me he has seen vibration in other patients and did not consider it the result of a malfunction. I asked if he had seen it as bad as I have it – being able to feel it in a patient's clavicles? He replied he had never touched a patient's clavicles before. Dr. Michelena personally reviewed the echocardiogram (looks good). During the consultation he had a radiologist review my CT scan (also looks good) there's no sign of scar tissue between the valve and the sternum to transmit vibration. His report states "I do not find an anatomic abnormality by echo or CT that could explain this or that could be corrected surgically." He said the valve is functioning OK. Of course I said from my perspective I dissagreed with that assessment. He said while the valve may be functioning properly, the vibration is "not typical". I asked him about the possibility of a "water hammer effect" being present and he said there is something described as a "water hammer pulse" which happens when there is severe leakage of the aortic valve, but said I don't have leakage. Which seemed to rule it out but then in his report he wrote: "the best treatment for this is to advance his beta blockers and try to reduce the vigorous ventricular contraction and thereby the degree of the water hammer pulse that occurs with the closing of the valve." He said the vibration isn't going to cause wear and tear over time. Ultimately he tried to play the vibration down and said "life is all about perception." He recommended I see a psychiatrist for anxiety. He was very pleased that I was scheduled to meet with Dr. Sundt the next day. I asked him about homografts and he said they don't do many of them and primarily in cases of valve infection because a homograft is the least susceptible to infection.
Surgeon Dr. Thoralf Sundt covered more of the issues I had questions about. Unfortunately he couldn't offer anything new and suggested the beta blocker approach as well. After physically examining me Dr. Sundt said "I’ll grant you that’s the most prominent vibration with a valve closure I’ve ever felt." He also said, "I think the valve is functioning fine, as designed. I think that the vibration happens when the leaflets close. I think you’re right, it never stops because hopefully your heart doesn’t stop, And I think you’re feeling it more because you’re skinny and it’s a big valve. I don’t think anybody did anything wrong, I don’t think the valve is designed wrong, I don’t think the valve is functioning abnormally. A guy your age I would have put in a mechanical valve too. We always put in the biggest valve we can fit because that gives you the best hemodynamics. But its a... yeah, I’m impressed by how much that shakes, how much that vibrates with every heart beat." He thinks the vibration is caused when the aortic valve leaflets slam shut with the backward pressure of blood after each heart beat, and is made worse because I'm thin and have a big valve installed (27mm, is that big?). When I brought up the Dacron conduit and a water hammer effect he agreed that my artificial aorta doesn't have elasticity to absorb the force of blood ejected from the heart the way a natural aorta does, so it could be part of the vibration issue. He said the vibration is caused by the valve and he disagrees with St. Jude Medical who told me the valve isn't involved in the vibration. Personally I think it may be a combination of the valve and the stiff artificial conduit. There's no medical reason to risk another surgery and take out a valved-conduit that is functioning fine. Of course with every heartbeat I don't feel it's functioning "fine" and anyone who touches my chest can form their own opinion but they don't have to live with it. All the same he has corroborated what my surgeon's opinions are. He also verified what my surgeon had told me, that they can't just replace the valve itself. A re-do surgery would require that the whole valve, root, and ascending aorta would have to be replaced and the coronaries reattached again. That's because of the nature of the valved-conduit that was installed. It would be a complete re-do with a 5-10% mortality risk for the surgery. Plus there's no guarantee the results would be any better, and of course things could be made worse in many ways and other problems created. I was surprised he said I may have had some vibration issues even if I'd selected a tissue valve instead of mechanical, though not as much. All the other doctors have said they didn't think I'd be having this problem with a tissue valve.
Dr. Sundt said several times he thinks the course of treatment should be to take beta blockers and reduce the force of the heart beat, which makes sense in theory, but I've been taking beta blockers at high dose since the surgery, that's nothing new. I'm at 150mg Metoprolol now and will probably try 200mg next. I felt he was up-front with me, he acknowledged my vibration phenomenon is the worst he's ever seen... which is something other doctors minimize because they can't change it. He suggested I should see a psychiatrist for anxiety.
I also asked him about mechanical resonance, homografts and the design of artificial aortas.
When I first got back from Mayo I was really depressed. Sometimes I get angry and discouraged that I felt much better before the surgery than I do after it. What makes it worse is clearly this isn't something that can heal or something that I can "recover" from. It's not a bad experience that will end with a cure on the other side. There's only constant vibration. It's hard to accept or have peace with because it never leaves me alone or gives me a break, so there are times when it really gets to me. So how do I move forward? I've got what I've got, now what? What do I do? I don't know, but I'm pushing to have this problem solved for future patients.
As some of you know many months ago I contacted Saint Jude Medical about this vibration issue I'm having with their valved-conduit and put them in touch and my surgeon Dr. Cohen (USC). Because I kept pursuing this problem with Dr. Cohen, and created a survey here on VR.com and presented the results showing him other patients have this problem too. He proposed to study this vibration issue with Mory Gharib (Chairman of the Department of Bioengineering at Cal Tech). Dr. Gharib has a lot of experience testing heart valves in an artificial aortic flow loop. The idea is to put various size St. Jude valve conduits in the loop and also compare St. Jude valves with "aortas" of various elasticity in order to shed more light on the vibration phenomenon. They will also be putting digital vibrometers on patients like me to try to measure the "phenomena". Dr. Cohen wrote to our contact at Saint Jude Medical, told him I knew of other patients with this problem, described the proposed study at Cal Tech and asked if SJM was interested in donating valves and conduits. SJM said they were interested and would participate but they never did send the materials. That was back in April, no parts means no research.
But some good has come from my visit to the Mayo Clinic. After my consultation there with Dr. Sundt I wrote to him requesting that he contact SJM about my case and to ask them to contribute to the proposed Cal Tech study. He forwarded my e-mail to SJM with a note about my valve and provided his follow-up report to them. They responded saying they would provide the materials. Today Dr. Cohen received a package with some valves and conduits, which is progress! But there were no "valved-conduits" (which is the all-in-one piece I have installed). He thinks that to do this correctly we need valved-conduits in all sizes as well as valves in the same sizes and is asking St. Jude if he needs to apply for a grant to do this. So some progress has been made but he doesn't have what he needs yet.
Dr. Cohen thinks we will learn a lot from this research, though he's concerned I "may not benefit as much as we would like" (i.e. no solution for me). I know whatever is learned form this study probably won't benefit me personally, but I'm still very excited about it. The study matters to me personally because I want to do everything I can to prevent other people in the future from enduring what I have. At least there will be some purpose, some good that comes out of it. I believe this will happen through awareness of the issue and research and development and I'm very grateful to Dr. Cohen for his efforts so far on this issue and I intend to do everything I can as an advocate.
