Sternum thumping update

[Eva]

I am so sorry for your discouragement and I sympathize with you...I wish I had an advice.

Will keep you in my prayers hoping a miracle happens...I strongly believe they do happen and I am a miracle survivor

 

[Plumber1]

Seth,

What you have postulated in regards to the thumping coming from the Dacron graft is what I have felt going on inside me for quite some time. What you are thinking makes a great deal of sense.

Water (blood) doesn?t like to compress. When we install water supply lines (yes I was actually a plumber for quite some time) we account for water hammering by installing arrestors that absorb shock when a valve is suddenly turned off. The ?water hammers? are found either at each fixture in a building or are installed for the whole house.

It does seem like the Dacron conduit installed in us behaves somewhat differently than original vascular equipment. I do feel thumping but only as a background sensation, not as acute as you are experiencing and I can only imagine how you might feel at times.

I can tell you that for me the thumping and noise has gotten better over time. Also, the cardiac rehab program I attend has helped quite a bit. Sometimes the thumping gets louder after I fail to go to cardiac rehab for 3 or 4 days but then after a workout it quiets down for several days. I have no explanation for why this would be so but do not argue with what seems to help.

I did send you copies of CT scans last week and hope you received. If not please PM me and I will be happy to resend.

I just know there is a solution out there for you. Don't be afraid to keep asking until you have an answer you can live with.

Keep faith and hang in there.

Mark

 

[gustaf]

Seth, sorry to hear that there were no obvious "mechanical" fixes. I think there can be a chance that hypnosis or other things can help at least partly. I can cope with it most of the time, but every once in a while it gives me sleepless nights. I have to sleep on my right side to get it down to a level where the whole bed is not vibrating (I am exaggerating a bit, but it does vibrate from the heart).

The actual surgeons and other doctors relating to the surgery were not used to this and had a hard time understanding that it was an issue. In all other aspects, they were utterly professional. My doctor fron the congenital heart disease center has been more understanding of it, but has no solution to it either.

A key question for me has all the time been if thereis any danger in the water hammer, and how it affects the graft and arteries long-term. The view seems to be that it shouldn't be dangerous in itself if the blood pressure is normal, but I suspect that there is not much to go after.

I have talked with and heard about a few other persons with similar problems, most of them had valve reconstruction surgery for the BAV rather than a valve replacement. I am not sure how common that procedure is internationally, but they have been pioneering it in Sweden. I am happy not to have to take Waran or Coumadin, but would probably have preferred it over the thumping. It might also be the reason for that I had an AV block and had to have a pacemaker as well, but I am not sure.

Anyway, I am following your story with deep interest and compassion.

::g

 

[seth]

It appears that the pounding-vibration issue is often linked to patients who have had an artificial aortic root, a Dacron ascending aortic graft installed. I think most of you who have posted about experiencing this problem fall into this category. Those of you who do not have the graft but are having this problem please speak up! Most of us have mechanical valves, but not all (Gustaf for example does not have a mechanical valve, yet he has the pounding problem very bad). It also seems to be commonly assumed that by replacing the soft cushioned fleshy aorta with an artificial hose the vibration characteristics inside the chest are altered for the worse. The aorta is the largest artery in the body and receives the initial blast of blood being pumped out of the heart.

My surgeon is confident his team performed the surgery perfectly and everything is just as it should be except for this extreme pounding that is occurring. The CT scans and echocardiograms post surgery seem to bear this out. He is frustrated and not happy with the manufacturer of my valve conduit who is deflecting all blame away from their product. I pointed out that I know of other people who are experiencing a similar problem who have valves by a different manufacturer and mentioned that having a Dacron graft seems to be a common theme. He has become interested in knowing how wide spread this problem is and what can be done to help people like us.

Eva, thanks for your encouragement, I would LOVE a miracle!

Mark, thanks for the CT scans and for your support. While my surgeon didn't buy into the "water hammer" terminology he did say he agreed with the basic concept. He thinks that the entire valve conduit is vibrating with the force of blood against the valve. This fits with how I experience the pounding. Each heart beat is a hard strike in the upper chest and vibration that shoots up into the base of my neck and radiaties out into the collar bones. I suspect that fluid dynamics plays a role in this effect. Mark, being a plumber, can probably understand what is happening better. As simple minded as it may sound perhaps a through understanding of plumbing would be a beneficial aid in engineering a heart valve conduit assembly that is free from this problem.

Gustaf, I too would like to know the long term effects of this condition. This is something that was brought up by other posters as well and is a very good point. I'm not really sure how a good answer can be formulated for future results. I think it would require the open cooperation of the manufacturers of these products, and them keeping notes and sharing information on inquiries and data from surgeons and patients like me who have contacted them. Such cooperation is not likely. Which is the greater priority for them, to share information openly with patients struggling with a problem? or protect themselves from any hint of liability? Unlike surgeons, manufacturers are one step removed from contact with patients. It is their job to make a product and make a profit. The safer their product is and better it works the better it is for their company, but when there is a problem they are, by the nature of the trade, not likely to be very open about it with the patients dealing with the problem. All the same I am working with them and should receive input from one of their doctors this week.

 

[vprnet]

Some interesting rough statistics and observations from this thread. I viewed the public profiles and this is what I found:

Of the 10 members who indicated they hear/feel heart thumping, including myself
All 10 took a mechanical valve
9 can be confirmed to have had a bicuspid aortic valve replaced with a mechanical valve
Most noted they had a Dacron conduit included

Some obervations can be made from this data:

Most, if not all are likely under 65, since all have chosen a mechanical valve. Those who posted age information support this.

Most if not all had a leaky aortic valve, again confimred by those indicated this and typical of a dialating BAV and aorta.

From this one can surmize that the hearts of the 10 were all strong prior to BAVR. and also are still after BAVR. What I've been told and believe I also read, is that the heart will pump with a much greater conraction to compensate for the inefficiency of a leaky BAV. This in part contributes to the dialation at the ascending aorta due to the high pressures at that point. It also requires the entire arterial system to become compliant because it must deal with a large swing between diastolic and systolic pressure.

The arteries and the large aorta are not supposed to be like solid tubes. If this occures it may be a form of hardening of the arteries which can develope with age and for many other reasons.

If you can imagine, just after the systolic loading from a strong pump of a former BAV heart (remember it compensated for inefficiency all those years), the arteries (miles of them) should become gently systolic during the diastolic phase of the heart. This is the point at which there is back pressure on the AV and it closes. As arteries stiffen with age, the systolic pressure from the arteries could cause the thump we feel and sound we hear. The man-made Dacron, which has little compliance, likely helps to broadcast the whole story.

Somethings to consider. Like myself, I would venture to guess that many of us were also on Zestril for hypertension prior to the surgery, some may still be on it. Zestril helps to relax the fine muscles in the arteries. The down side is that it also helps to relax the heart tissue around leaky valves like the aorta and mitral. So there seems to be a trade off with this med. Top this off with correlation studies being made between BAV and relationship with abnormal arterial cells, you can then appreciate the importance of understanding artierial health for someone who has/had a BAV.

If you are interested in the importance of your arteries and the affects of atherosclerosis, I found these sites usefull:

http://www.vascular.co.nz/hardening_of_the_arteries.htm#What is hardening of the arteries

http://www.emedicinehealth.com/hardening_of_the_arteries/article_em.htm

So what is the moral of the story ?

Excersize, LOTS and LOTS of cardio excersize. Excersize will help the BAV heart recover from the hard systolic contraction it developed during rest to compensate for the leaky BAV. It will also help maintian the health of the arterial system. BAV patients need both. I would venture, the heart will grow quieter with excersize and time. PS, even if you were an athlete before, because leaky compensation might have had to deal with the demands of larger mucles at the tiime.

I'm goinng out to get mine now!

Vincent (54)
BAVR with 27mm ON-X NYP Weill Cornell Dec 19, 2008.

PS. I am not a medical professional or a doctor. My comments in this forum are my own opinion and are not intended to be given as medical or professional advise or a recommendation of any valve choice. Decisions that affect your health and wellbeing are ultimately yours and your doctors. vprnet

 

[Joecb]

I am little late in jumping in here, but I too have a similar experience. I had my aortic valve replaced in -89 and I had it replaced again last month -09 with a SJM valved graft to repair an aneurysm that had developed over the years. It was fairly recent, so I've been hoping that it will dissipate over time. As it is now, it is about as loud as my previous valve, but when I take a deep breath, sigh, yawn etc., the beat reverberates throughout my sternum, ribs and collar bones. Although, it is unusual and somewhat annoying everything seems to be working well. My heart rate has returned to normal and I no longer have the annoying throat tickle/cough that had when the aneurysm was there. I'm looking forward to hearing what you learn on the issue, but I plan on sleeping with the fan on to give me some white noise and hope that it gets better with time. The idea of surgery would definitely not even be on my radar unless there were a problem that justified that risk. Good luck to you and I hope that it gets better for you.

Joe

 

[Ross]

Well this is my CAVG-404 which is not much different from yours. When I first got it, I had a I supposed what you could call a pounding sensation in my throat that was bothersome, but soon went away entirely. As I type this, I'm touching my collar bone and I can definately feel it that way, but that is the only way and no, I'm not touching the clavicles or veins, I'm touching the bones themselves. My valve was tricuspid before.

 

[tobagotwo]

Well, letting a cold-hearted tissue valver chime in, here is what I found...

In chasing through the FDA folder, here is what I gathered in a quick overview of the incidents, mostly specific to the Regent, which is in question.

I took the failures of all reported mechanical valves since my OHS on 4/06/04. (Be aware that many are not reported.) There were about 360 total reported in almost five years. Most did not lead to the death of the owner, resulting in symptoms that brought the patient in.

About 2/3 of them were from St. Judes. Not surprising - they probably supply well over 2/3 of the market. Carbomedics and Metronic trailed significantly far back for second and third. For the curious, only a few were from On-X, and were all found at the time of surgery. Also not surprising - they still supply a fairly small percentage of the market, and five years ago: none, I believe.

Of the 360 or so, about a third were found at the time of the surgery (apparently some surgeons use excessive force with their tools during the rotation process following suturing), consisting of cracks, chips, damaged/lost leaflets, and broken product, and were replaced before the patient woke up.

About three quarters of what were left from that were replaced due to pannus (scar tissue) growth impeding the valve (most), blood clots/thromboses (fewer), perivalvular leakage (even fewer), or due to endocarditis (much fewer).

The remaining fifty or so were centered around damaged or lost leaflets. Interestingly, most of those were in the mitral position. The question that begs to be asked for them is whether most of this damage was actually from that first third- the mishandled group - and just didn't show up until days, weeks or months later.

What kind of percentage is that?

-There are approximately 225,000 valve replacements annually (a number I chose based on reports ranging from "over 200,000" to "275,000").

- As the number of bioprostheses eclipsed the number of mechanical valves in 2005, a bit less than half of them are mechanical. So to put a line in the sand, let's say there were 550,000 mechanicals put in within the five years we looked at.

- Not counting all the mechanical valves already out there (and they do count), the average problem per mechanical valve is .07% (that's seven hundredths of one percent). Puny.

Of course that's a manufactured number. It ignores all the bad valves that weren't reported, and it also ignores all the many hundreds of thousands of valves that were already out there before April of 2004. But it still makes a reasonable, logical point: mechanical valves are extraordinarily safe.

I will also venture to say that the appearance is very strong that those mostly came to be damaged as a result of Misadventure By Forceps during implantation. MBF in most cases would indicate that the surgeon likely applied a bit too much testosterone to the forceps during the valve implantation's rotation process. I've broken 1/2" steel bolts by overtightening with a wrench. I have no place to comment about the minute and delicate rotation of an implanted heart valve already sutured to a human heart.

For the curious, of the reported tissue valve failures on the FDA site, there were about 500 for that same time span. The vast majority were located in the operating room before the patient left the table (more forcep play). The very large majority were Edwards (bovine pericardial, magna, etc) valves, trailed far behind by St. Jude (Epic, Biocor, Toronto), who squeaked a narrow lead over Medtronic (Mosaic, Hancock, Freestyle). These were mostly leaflet damage, with thromboses and pannus trailing well back for second and third.

Best wishes,

 

[tobagotwo]

By the way, the foregoing was not to impinge on Seth's issues at all. Real is real, and his issues sound very real to me. It does mean that his is a rare instance, so most who are considering St. Jude Regents may consider themselves unlikely candidates for this unfortunate outcome.

There is some possibility that you are still dealing with a hyperdynamic left vetricle that is still pounding in that blood, despite the fact that the restriction is now so much less. It is somewhat possible that you might have had better results with a larger aperture model. There is also a small possibility that your valve may not have rotated well during implantation. I would keep hounding them about it. What to demand, I do not know. It's Hobson's choice.

I hope it settles down, and things become better for you.

Be well,

 

[aussigal]

Many weeks and days later...sorry Seth...our internet is not working very well at present and coupled with my terribly slow laptop and lack of skills etc... this took me ages/hours to do....its not as good a pic as yours either but I hope it helps a little....

The best pic of my valve shows it in a totally different position to yours...mine is tilted much differently to yours and if I were lying on my side mine would almost be flat whereas your appears to be in the flat position as you are standing upright...I hope this makes sense and I have interpreted the information correctly...it also seems to tie in with what Bob H has just said about "seating" of the valves....I dont know if its significant or anything but did find it rather interesting to note this.

 

[seth]

3-29-09 Update

3-29-09 Update

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]

Survey

Survey

If you have had aortic valve and/or ascending aorta replacement and also have experienced a pounding sensation with physical vibration related to the beating of your heart, please take the survey at the following link.

http://tinyurl.com/cmj3c6

Thank you

Keywords: heart pounding chest vibration against sternum thumping

 

[Eva]

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 hope the exchange of info between the two doctors may shed some hopeful light!

Good luc and prayers,

 

[seth]

I've been experiencing episodes of chest pain and weakness. I talked with my cardiologist, Dr. Roth on the phone and said he doesn't think I need any more echos, cardio caths or other tests and recommended I go to a Pain Management Specialist (PMS). He doesn't want to get involved prescribing the sort of medications a PMS prescribes since the drugs are often narcotic based and have addiction risks.

When I asked him if it is typical for someone to be having chest pain nearly 10 months after surgery he said it was not, that I'm the only patient he has with this. I would rather have the cause of the pain and the pounding-vibration be identified and fixed. I just think if the issue is solved then maybe there won't be anymore episodes of pain. But there doesn't seem to be a solution that can be applied. So I'll probably visit the PMS to see what they can offer.

Dr. Roth said he frankly thinks that nobody involved with my case really knows what to do (including himself, my surgeon Dr. Cohen, and St. Jude Medical's Dr. Frater). He told me he recently spoke with Dr. Cohen who has been discussing design issues with St. Jude. I'll find out more from him directly.

 

[Mary]

I've been experiencing episodes of chest pain and weakness. I talked with my cardiologist, Dr. Roth on the phone and said he doesn't think I need any more echos, cardio caths or other tests and recommended I go to a Pain Management Specialist (PMS). He doesn't want to get involved prescribing the sort of medications a PMS prescribes since the drugs are often narcotic based and have addiction risks.

When I asked him if it is typical for someone to be having chest pain nearly 10 months after surgery he said it was not, that I'm the only patient he has with this. I would rather have the cause of the pain and the pounding-vibration be identified and fixed. I just think if the issue is solved then maybe there won't be anymore episodes of pain. But there doesn't seem to be a solution that can be applied. So I'll probably visit the PMS to see what they can offer.

Dr. Roth said he frankly thinks that nobody involved with my case really knows what to do (including himself, my surgeon Dr. Cohen, and St. Jude Medical's Dr. Frater). He told me he recently spoke with Dr. Cohen who has been discussing design issues with St. Jude. I'll find out more from him directly.

You indicated in the S. Calif. get together thread that other VR members had a chance to evaluate your pounding/vibration. What are their thoughts regarding the severity?

 

[seth]

Hi Mary, I will see if they will post their thoughts and reactions on this thread, I'd rather they speak for themselves. But I thought they seemed surprised by the severity of the pounding-vibration, and Mike (Resqrn) who was a cardiac nurse said he'd never seen such a condition before.

 

[Lynlw]

Seth, Have you considerred getting any other 2nd oor 3rd 4th opinions?

 

[seth]

Lyn, yes I collected all of my medical records that I could get my hands on and was starting to research who would be good to see for a 3rd opinion but I got laid off from my job. That has been very stressful and I have not pursued the 3rd opinion. Since then I have divided my time between trying to get another job, working with my surgeon and St. Jude Medical on this issue (a slow process but at least they are not shutting me out), and collecting data from other "valvers" who are experiencing similar problems.

But getting another opinion points towards what I really need which is answers. What is really going on inside me to cause these problems? what is the cause? and how can it be fixed? (if it can be fixed). I wish I knew of a test that could show the motion of what is going on with the heart, the valve, the aorta and the fluid dynamics with every beat of my heart. Is there something, anything that can show that?? If there is I'll request, demand, beg that it be done.

 

[Eva]

..........
Is there something, anything that can show that?? If there is I'll request, demand, beg that it be done.

MRI??!!! just a guess!!

 

[seth]

From Reunions Forum

From Reunions Forum

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

Just to let everyone know Seth's heart really is loud, he is not exaggerating! It does pound and you can see his chest moving, you can hear it too from up close. Seth, I hope they can some way make this better for you! Debbie