Sternum thumping update

[Lynlw]

Lyn, here's what Debbie posted on the Reunions thread:

I saw that and I honestly can't imagine living life for decades like that, but like others don't have any suggestions, MY guess would be a MRI or the 64 slice CT scans might give the best picture , outside a cath of what is going on.
Would that be ok itf I send the first post from here to one of my friends who is a pretty well known CT surgeon and ask if he has any thoughts?

 

[seth]

From Reunions Thread

From Reunions Thread

This is from Mike (Racefan)

Seth is pursuing answers to questions that some, including myself have regarding chest vibrations and thumping that his surgeon and the so called 'experts' at St Judes have yet to resolve. His new valve and conduit really do knock incredibly hard so hope that someone can come up with an answer that makes some sense. Mike

 

[seth]

Would that be ok itf I send the first post from here to one of my friends who is a pretty well known CT surgeon and ask if he has any thoughts?

Thanks Lyn, yes, please share my information. I'm interested in hearing what your surgeon friend thinks and I'd be happy to answer any questions.

 

[Racefan]

Hey Seth,

First off, really wanted to thank you and your adorable wife Lilly for letting us meet at your place.
As for the sound of your valve/graft, hard to give a db rating on the sound but a good reference might be to measure the distance that someone can be from you in a quiet room and hear the thumping. I bet at least 8-10 feet. Of course, YOU are always just inches away Really hard for a non valver to wrap their melon around that concept. As you witnessed I can take a deep breath and hear/feel my chest vibrate to a similar level but it normally it just clicks much more subdued than yours. Keep posting your doc's answers to the site and I'm sure you'll get plenty of feedback to digest.


Mike

 

[brunoandbear]

I've got the thumping now myself after having my ascending aorta repaired a couple of weeks ago. It doesn't really bother me as I know my heart is beating when I hear it. As far as if it is normal or not - I have no idea.

 

[BDMc]

Seth, I am so sorry you are having this experience. I think you are doing well in your pursuit of answers. Sadly none of the experts have a solution! I spoke with Debbie about your valve after your reunion. she told me it was exceptionally loud. I imagine it was some comfort to have others acknowledge your complaint. I know how frustrating it is to be shrugged off by health professionals as if you are crazy. Ironically, I think hypnosis, yoga, and psychotherapy may be good avenues to pursue. Good practitioners will help you develop a sense of control in your life. While it may not help with the pounding, it can do wonders for how you feel. I know the job loss complicates things tremendously, but perhaps it will provide the time you need to decide how you are going to deal with the valve issue. You are doing a great job looking for answers. Make sure you take stock of that! Try to think of what you want, and not of what you are afraid of. I have found this very helpful in dealing with my anxiety/fears. You are much stronger than you give yourself credit for. And lastly, I think it is possible that your heart will readjust in time. Wishing I could send you some comfort and relief, Brian

 

[ALCapshaw2]

Seth,

I've just gone over most of this thread and as an Engineer, found the "water hammer" explanation 'intriguing'. It seems the most plausible explanation for your symptoms. To my mind, the entire system performance (valve AND conduit) needs to be measured, modeled, and understood before taking any action.

At this point, I would encourage your Surgeon and St. Jude to consult with an expert in Fluid Dynamics. Hopefully St. Jude has someone on staff (or a consultant) who understands both the Heart / Valve / Conduit mechanics as well as Fluid Dynamics.

I'm not a mechanical engineer so I can't help with the specific details, but it would seem to me that the length, diameter, and stiffness of the conduit would all come into play. I'm wondering if there isn't some "mechanical resonance" that could be tuned (i.e. change the length) and Yes, that would mean another surgery. The comment from Plumber about how the "water hammer" problem is handled in House Plumbing may offer some insight as well. After all, the Heart is just a Pump connected to some Valves and Plumbing! Call a plumber (literally .

This sounds like a system engineering problem that needs to be studied and addressed by all parties (Surgeon, Valve Manufacturer, Conduit Manufacturer). I hope they can come up with a solution for you and others, past and future.

'AL Capshaw'

Did you read my previous response which discussed an alternative cause for the "Pounding Heartbeat" often described by patients shortly after surgery (typically more advanced cases)?

 

[Duff Man]

The guy who was my first contact with St. Jude Medical (the manufacturer of my valve/conduit) referred me up the food chain to Dr. Frater, the Medical Director of the Surgical Division of St. Jude. He is a retired cardiac surgeon. Dr. Frater and my surgeon (Dr. Cohen) have corresponded via email about my case. Dr. Frater says my vibration issue is "a new complaint" for him. He says mechanical valves are definitely heard by some patients but a "vibration" is something else. He questioned if the valve is too small, Dr. Cohen explained he has two patients with the vibration issue and both of us have large valves (mine is 27cm, the other's is 29cm). Dr. Frater wants to know what the phonocardiographic characteristics of the vibration is. Dr. Cohen says he is currently looking into some ways to measure the sounds and vibrations made by the valve conduits. I'm all for any testing that will reveal what is actually happening with every beat of my heart to cause this vibration problem. As far as the hypnosis angle goes, so far I don't have an answer if insurance will cover therapeutic hypnosis.

Seth, I haven't read past this post yet, but I wanted to tell you that on-x specifically mentions that surgeons report being able to feel a "thrill" from mechanical valves that aren't on-x valves. When they install their first on-x valve the lack of "thrill" or vibration is conspicuous because that's what they feel for to know blood is moving through it. I do believe all mechanical valves vibrate to some extent, and I think St. Jude is known for it by some experts or valve makers. I personally don't think this problem is unique to your valve, but rather you're uniquely sensitive to the sensations made by the valve.

-My two cents.

 

[seth]

Thanks for the posts, ideas and help.

My surgeon, Dr. Cohen, has told me he thinks the only surefire way of fixing it would be to replace it with a conduit containing a bioprosthesis (pig or bovine valve) or human homograft. He feels we should do everything possible to avoid that, given the risks associated with reoperation, and the potential for those types of valves to wear out, which at my age (45) would almost certainly mean a 3rd even riskier OHS with lots of scar tissue and at an older age.

Me and Dr. Cohen think the vibration is not confined to the mechanical valve alone but probably linked to the graft/conduit. His guess is that the dacron conduit is not nearly as elastic as the aorta, resulting in a more dramatic response when the valve closes. I think ALCapshaw2's comments particularly fit with the evolution of thinking about this issue, and I will pass them along as I believe mechanics and fluid dynamics is what this is all about.

Currently Dr. Cohen is working with a professor at Cal Tech designing two experiments. One is to compare St. Jude aortic valves with Valve conduits in an aortic simulator. The second will be to use a "vibrometer," to measure the "phenomenon" in patients such as me who have an artificial valve and artificial aorta, then measuring people who have only had the valve replaced.

A couple weeks ago I submitted the results of my VR.com vibration-pounding survey to Dr. Cohen. Here are some of the results: 11 of us took the survey. 10 out of 11 have artificial aortic grafts. 10 out of 11 have mechanical valves. 7 out of those 10 are St. Jude valves, 5 are the same valve-conduit design (I'm in that group). 1 person had their valve replaced in 2000 with no pounding-vibration, then had the artificial aorta installed in 2007 and the pounding issue started.

I'm still having heart/chest pain occasionally that usually lasts for a couple days. I don't know if this is typical 10 1/2 months after surgery but I doubt it. I have an appointment for hypnotherapy scheduled for early May. I will see how that goes. Still no job yet but I'm working on a temporary freelance job.

 

[Ross]

Cool deal Seth. Sorry about the job situation, but as you know, your far from alone on that one!

 

[ALCapshaw2]

Thanks for the posts, ideas and help.

My surgeon, Dr. Cohen, has told me he thinks the only surefire way of fixing it would be to replace it with a conduit containing a bioprosthesis (pig or bovine valve) or human homograft. He feels we should do everything possible to avoid that, given the risks associated with reoperation, and the potential for those types of valves to wear out, which at my age (45) would almost certainly mean a 3rd even riskier OHS with lots of scar tissue and at an older age.

Me and Dr. Cohen think the vibration is not confined to the mechanical valve alone but probably linked to the graft/conduit. His guess is that the dacron conduit is not nearly as elastic as the aorta, resulting in a more dramatic response when the valve closes. I think ALCapshaw2's comments particularly fit with the evolution of thinking about this issue, and I will pass them along as I believe mechanics and fluid dynamics is what this is all about.

Currently Dr. Cohen is working with a professor at Cal Tech designing two experiments. One is to compare St. Jude aortic valves with Valve conduits in an aortic simulator. The second will be to use a "vibrometer," to measure the "phenomenon" in patients such as me who have an artificial valve and artificial aorta, then measuring people who have only had the valve replaced.

A couple weeks ago I submitted the results of my VR.com vibration-pounding survey to Dr. Cohen. Here are some of the results: 11 of us took the survey. 10 out of 11 have artificial aortic grafts. 10 out of 11 have mechanical valves. 7 out of those 10 are St. Jude valves, 5 are the same valve-conduit design (I'm in that group). 1 person had their valve replaced in 2000 with no pounding-vibration, then had the artificial aorta installed in 2007 and the pounding issue started.

I'm still having heart/chest pain occasionally that usually lasts for a couple days. I don't know if this is typical 10 1/2 months after surgery but I doubt it. I have an appointment for hypnotherapy scheduled for early May. I will see how that goes. Still no job yet but I'm working on a temporary freelance job.

Great Survey and Great News Seth!

The evidence certainly points to a systemic response of the combined valve and conduit. I'm very suspicious of a "mechanical resonance" with a reflected wave that comes back to the valve, creating the 'slamming' sound and sensation.

I recall working in a building where there was a pump and piping system (I'm not sure what it was pumping) were mismatched in diameter. I'm not sure where the 'interface' was located (i.e. at the pump or some sort of coupler between two different diameter pipes), but that system was VERY NOISY, creating a Pounding Sound constantly.

I'm glad to hear that your surgeon is taking your symptoms seriously and doing some research on the issue. You may be responsible for expanding the world's awareness and understanding of this issue. Please keep us informed.

'AL Capshaw'

 

[Maryka]

Vincent Sciavelli's fear of noisy heart valves

Vincent Sciavelli's fear of noisy heart valves

When I was still thought to be officially a Marfan person, I got to spend a few minutes with Vincent Sciavelli (spelling may be off, sorry). He was a very busy character actor. You would recognize his face, if not his name. He was definitely Marfan-looking, which sometimes is a bit "odd". Anyway, Vincent had to have his aortic valve replaced and argued with his surgeon about how it must absolutely be quiet enough to not be picked up by microphones. The surgeon gave him names and phone numbers of women who had had the same valve replacement as Vincent was scheduled to have. Vincent visited the women and tried to hear if their valves were loud enough to hear from a normal conversational distance. (When Vincent told the story he said he wanted to ask if he could put his head on their chests and take a listen, but restrained himself.) Well, Vincent had his surgery and worked for many more years as an actor.

Later, Vincent took his movie money and moved back to his parental homeland of Italy. He wrote a number of cookbooks in those years. Sadly he died of lung cancer--he continued to smoke until the end.

Sorry again about your noisy valve, by the way!

 

[seth]

To be clear, the issue isn't about noise. I don't have a noisy valve, in fact I have a quiet valve. The valve itself can hardly be heard unlike some mechanical valves. What I have is internal pounding and vibration which can be heard as the sound of bone being struck.

I personally don't think this problem is unique to your valve, but rather you're uniquely sensitive to the sensations made by the valve.

Duff Man, I have pounding-vibration in my sternum, my collarbones, my neck, my head, my shoulders, my spine, my lungs and my diaphragm. The people who know me and have felt the vibration in my body tell me things like "No way! I can't believe you have to live with that! Isn't there something they can do?" They don't think I'm "uniquely sensitive." Neither does my surgeon, that's why he is collaborating with Cal Tech to study this issue.

 

[ALCapshaw2]

Seth -

I consulted with someone who has some experience 'in the field' who responded with a question about whether your graft is a "Straight Graft" or a "Valvsalva Graft".

Do you happen to know the Serial Number of your Valve / Graft?

FYI, Straight tube grafts are a uniform diameter throughout the entire length of the graft with no bulges. The natural aortic root has three "sinuses of valsalva" (little pockets or bulges right above the valve) that encourage blood to flow into the two main coronary arteries.

I was also provided with some reference material that discusses the effect of Valve Turbulence and goes into more detail on the differences between straight grafts and the natural shaped valvsalva grafts.

Can you tell me if you accept e-mail sent through VR.com?

 

[seth]

ALCap, thanks for your input. My valve is: St. Jude Medical 27CAVGJ-514-00. As I recall this valve conduit does have the artificial sinuses. The St. Jude site is down for maintenance right now but this should be the link attributed to my model number. http://www.sjmprofessional.com/Products/US/Heart-Valve-Replacement/Valved-Grafts.aspx

I'm very interested in the reference material. I don't think sending me an email through the VR.com site works. I tried sending you a Private Message with my email address but got a message saying you have exceeded your stored private messages quota and cannot accept further messages until you clear some space. Send me a PM with you email and I'll respond back.

 

[seth]

Another step forward in the research project

Another step forward in the research project

Good news, St. Jude Medical has agreed to support the research project. SJM will be donating valves and valve conduits of various sizes to my surgeon Dr. Cohen for testing at Cal Tech.

 

[gustaf]

I have now had my last remaining congenital heart defect fixed. I had a stent placed through the femoral artery to enlarge my constricted aorta. It seems to have worked fine, and I have now a blood pressure of 120/75.*

I had some hopes that this would diminish my pounding sensation. It is alittle bit early to conclusive, but so far I would have to say it hasn't. I have had a clear change in that most of the pounding is now against the collar bones. This is worse when I am lying down but probably better otherwise. I will see if I can adapt to it better over time.

Otherwise, I am extremly interested in your study and what it can lead to. In my case, it now really feels like the graft somehow connects to the collar bones and creates the pounding. Maybe I could ask for a small OHS where they added some cotton bolstering...?

BR

::Gustaf

*) I did have some other complications from the non-inasive procedure. I lost a lot of blood when they had problems closing the artery and also had a circulatory stop in the leg for some time, and later both bleeding and thrombosis. So I had a pretty advanced vascular surgery two days later to fix it. So far it looks OK, but it will take a number fo weeks before the leg is back in some decent shape, and I am hoping there is no permanent damage.

 

[ChouDoufu]

hey seth, i was sorta wondering. other than a surgery redo, what have they
considered? what about padding/insulation to muffle the pounding? could
they add some kind of silicon, i.e. breast implant material, around the conduit?
would that be considered minimally invasive? and what's the solution with
water supply systems? isn't there one or two small side-reservoir thingies
installed to prevent water hammer?

 

[ALCapshaw2]

Seth,

I've been thinking about your vibration issue some more and came up with 2 questions / recommendations for study.

1 - It would be interesting to know if the amplitude of your vibrations is frequency dependent, i.e. does the intensity of the vibration vary with Heart Rate?

You may want to ask your Surgeon / Cal Tech researcher if they can characterize the Frequency Response of your Valve / Conduit.

2 - It would be interesting to know the Impulse Response of your Valve / Conduit combination.

I'm still suspicious of a "Mechanical Resonance Response" which can be affected by the physical dimensions of your conduit and your heart rate. I'm thining that a "Reflected Wave" may be the cause of the vibration / pounding.

These would be good topics to discuss with the Cal Tech professor. Do you happen to know what his field of expertise is in? I'm guessing / hoping it is in Mechanical Engineering with a focus on Fluid Dynamics.

'AL Capshaw'


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