Pounding and vibration with valved conduits
Pounding and vibration with valved conduits
Kim, Lyn, Greg and Julian thanks for posting on this thread. Your contributions are what make this forum good.
Janie, Thanks for posting about your husband David's condition, it is important to speak up and look for answers just as you are doing. David is fortunate to have you as a teammate. I'm glad David survived such serious issues as you describe. Wow! I'm sure we can all appreciate the harsh reality that if not for modern surgical intervention he (and others of us) would not be long for this world. Go back a brief 50 years or so ago and he would not be afforded survival. So, kudos to bio-tech advancements, hats off to surgeons, and yes we are thankful and grateful to be here.
Having said that, I'm saddened to hear you think David is having similar results as mine. Unfortunately this is no surprise to me, nor is it surprising that his surgeon is blowing it off. I won't pretend to know exactly what your husband's condition is or what he is experiencing, but if there is enough in my story that he (and you) can deeply relate to, then you have my attention. And if his condition is life altering and each day involves a struggle to cope, then he has my empathy and sympathy. What I will share with you here comes from my personal perspective. Keep that in mind. I'm just a guy with a situation that you may be able to relate with. As always you will have to decide for yourself how to process the information you collect. Hopefully I can be of some help.
It is discouraging to deal with atypical (abnormal?) pounding/vibration results from surgery. It is frustrating to struggle with it, turn to doctors and other patients only to have your condition misunderstood and/or minimized. Friends, family and people who you meet don't see anything wrong with you. Your surgery was expected to fix certain problems, you probably had no clue it could also have results that would change your life so negatively.
I agree with what Julian said, that everyone is different in some way or another. People online, while trying to be helpful based on their own experience, may say things that are really off the mark as applied to your particular case. Not everyone has the same results from the same type of surgery and this can lead to confusion and misunderstandings about what you are enduring. Doctors may not understand it either. It is especially exasperating to have doctors and surgeons (from whom you would expect accurate interpretations and answers) dismiss, minimize or, even worse, deflect back onto you in some fashion the effects of excessive vibration. Some doctors will brush you off. Perhaps that is partly because they don't have good answers or solutions. All of this can lead to a sense of isolation, that you are suffering alone, that no one else has what you have. You are not alone. It takes great fortitude to endure this problem when it is happening at an extreme level. Although it may feel like you are going crazy, you are not crazy and it's not your fault. There have been times when I've wanted to jump right out of my skin like a bolt of electricity, to exit my body and be free. The worst times for me are when I'm having chest pain and anxiety. Then it's just a matter of getting through it. It's a battle. Sometimes I'm losing the battle, other times I'm winning, or I'm someplace in-between, but as long as I stay in the fight there are so many things in life to enjoy. As brutal as this problem has been, and continues to be, there are more things about my life that are normal than abnormal and I try to dwell in that space. I wish there was some Jedi mind trick that we could use though!
I have searched for answers about abnormal vibration effects after Bentall Procedure (Bentall is combined aortic valve replacement, aortic root replacement and ascending aorta replacement, typically done with a single valved conduit but not always). I have found no good explanations or solutions for this problem which is disappointing because it is a constant struggle to deal with. There is a gap people disappear into with this condition. Apparently it is not a typical result and is not a common enough occurrence to raise the attention of very many medical professionals. I suspect that it happens to a greater or lesser degree more often than anyone knows because patients don't purse their complaints enough to make them register. When an occasional patient does complain it can be brushed off as a freak occurrence. It is preferable to both doctors and valved-conduit manufactures that these problems (and the people with them) stay out of the way because there are no answers or solutions to offer and it is easier for the wheels of industry and commerce to continue turning as is.
When the patent's problem is an aneurism plus a bad valve the doctor's standard solution is replacement with a valved-conduit. But when the patient's problem
after installing a valved-conduit is excessive vibration what is the solution for that? Doctors don't have a solution for that. They will give a variety of responses including denying there is a problem at all, or saying the problem is really because the patient is not coping properly. But patients who have to deal with a severe version of this problem every second of every day have a different perspective. It is our reality, a reality we have been unexpectedly forced to endure and we can't just dismiss it.
You have to take care of yourself. You can't expect doctors to do it for you. Even though you rely on them for many things, there are other things you have to do on your own when things don't go as planned. You have to be an advocate for yourself and your case. Search extensively for answers to the questions that apply to you. If it turns out there are no good answers or solutions then at least you will know you've adequately explored the issue as it exists to this point. I hope you will share with me what you learn along your journey. Things may change in the future, it's up to us to make them change. Perhaps you can join me to help change the situation and perfect the process.
If you are living with extreme vibration you know its unique torment and the mental battle that you have to wage continuously without relief. My life now involves a constant mind-trip-struggle complicated by preexisting biological issues with anxiety and depression. One of the reasons I stopped posting on this forum was because I honestly could not provide nice comforting answers to anyone with my condition, plus I could not relate to other people who have their surgery then go through the healing process and get back to life pretty much as they once knew it. My life before surgery is gone. It's too easy for me to resent other people who are free of this problem (that's a lot of people). I just try to recognize that we all have our various problems, demons, weaknesses, limitations, talents, hopes and potential. There's nothing to do but become a deeper person and keep building myself up because there are forces that are always tearing me down. Fight the good fight I say. Over time I've become somewhat battle hardened and better at dealing with it. In that sense there has been some improvement. I will myself to constantly keep refocusing my mind on something else. I can't personally offer the kind of help and comfort you are probably hoping for, I wish I could, I really do, but at least you know that you are not alone, there are people who understand.
Keep fighting. I encourage you to take the fight beyond your internal struggle. I recommend you let all your doctors and Saint Jude Medical know about what you are dealing with. Explicitly tell them that it's not right and it gravely effects your life. Be polite, respectful, but persistent to the point of being bothersome if that's what it takes to get your message across and get a reaction. Why should you do this? Because it's the only way to get answers about your case, to raise awareness about this issue, and to ultimately effect change. It also helps to know you are taking action and are not simply a victim of circumstance. Channel your frustration, anger, despair and pain into action. And more than anything be persistent and don't go away.
If you can find the strength I recommend you do the following:
1. Contact St. Jude yourself and complain about the problem. Pursue them until they investigate your case and file a case report. Their Heart Valves and Repair Products phone number is: (800) 544-1664, email:
[email protected] Contact them, tell them what you are dealing with and that things are not right.
2. Don't let your surgeon blow you off. Launch a sustained effort to make your him recognize your vibration issue. It only makes sense that if it is bothering you and you know something is wrong that it should bother him too. He needs to recognize it's not right. It falls upon you to bother him about it in a non-threatening sort of way. Realize that surgeons in this society have to protect themselves from being sued and thus the things they tell you will be shaded with that in mind. You won't immediately get the straight scoop. They have to be cautious and somewhat callous in their profession. There is no incentive for them to admit something is a problem if they know it is not life threatening and feel there isn't anything much they can do about it anyway. But don't let your surgeon disregard your issue and move on! It's not fair to you or the other patients who will continue to have this problem in the future because no one is raising red flags about it. If we who have this problem don't raise a red flag who will? No one. So, raise your flag and wave it until he acknowledges the problem. Then once he does insist that he contact St. Jude about the issue. It's important for SJM to hear from surgeons that there is a vibration problem with their valved-conduits in some patients. Surgeons have clout with SJM that you don't have. Keep following up with your surgeon until he does this. If you are not persistent you will disappear in the never ending stream of new patients that keep coming across his desk and operating table.
Surgeons will see what they expect to see if you don't not knock them out of their rut. After my surgery my surgeon at USC was minimizing my issue, not really paying close attention. Doctors hear a lot of complaints, it's nothing new to hear complaints. I had to go get a second opinion from another surgeon at UCLA. This surgeon minimized my condition during consultation also, but he did contact my surgeon. I don't know what they talked about but this caught his attention. He then admitted my condition was not right and that he was frustrated about it because he had another patient with similar effects. I went to yet another surgeon at the MAYO Clinic for a third opinion, and I collected survey data from other patients online with this problem and presented it to him. I earned my surgeon's respect. I'm lucky, I have a surgeon who really cares about his patients but it was hard to get even his attention and acknowledgment of the problem in the beginning. Now he is a key ally in finding a solution for people with this problem. The point I'm making is heart surgeons are very busy saving lives, so be persistent, be polite, be bothersome, be respectful, keep demanding answers and get your message across. Tell him what you have isn't right, that you are suffering and SJM should hear from him about it. If we each got our surgeons to contact SJM about this issue things would change. But it's up to us to make it happen.
3. Don't stop with your surgeon. Let your cardiologist know things are not right and get him/her to contact St. Jude Medical about it for you.
As you can see all these approaches ultimately lead back to Saint Jude Medical. It is not strictly a SJM problem. Patients with other manufacture's valves and conduits report similar issues. But SJM is the biggest manufacture and they made the prosthesis you and I have, so they are who we are pursuing.
You are probably wondering where is the vibration coming from? What causes it? What my surgeon and myself
suspect is there is some dynamic, a perfect storm of conditions, that can occur between a mechanical aortic valve and an artificial aortic conduit to cause excessive vibration. A mechanical valve does not behave exactly like a natural valve does, and an artificial aorta does not expand and absorb the rush of blood into it the way a natural one does. All the variables and fluid dynamics need to be studied in a lab so the problem can be replicated. We are seeking funding and support from SJM for research to figure out how and when this occurs so that ways of avoiding the problem can be created.
Although I have not provided updates on this forum about my case, or my continued interactions with Saint Jude Medical, I can tell you that I continue to be in contact with people at SJM to advocate they fund research on this issue. There have been steps taken, and some progress made, but it still only amounts to words and not actions at this point. I'll post a more detailed update about my case and the status of research in a separate thread which may be of interest to you. There is a survey I created that I hope you will take which I will use to continue to bring this issue to the attention of people who can effect change.
Best,
~Seth
