Sternum thumping update

[seth]

I met with my surgeon on Monday and he finally admitted there's a problem with my valve. He knew I'd gotten a second opinion, maybe that helped move him off the blame the patient and act like this is a common occurrence approach. He spent 25-30 minutes with me and didn't try to down-play or brush off my condition like he had done in the past. He said the pounding against my chest is because the mechanical valve is closing too hard, like a door slamming shut shaking everything. He said several times that my condition is very unique, he doesn't have any patients with what I have. He admitted he doesn?t exactly know what to do about it.

He said the valve could be replaced but he would prefer not to risk another surgery because, 1. my heart seems otherwise healthy and functioning, 2. the point of using a mechanical valve was to hopefully avoid another OHS for the rest of my life. Also a second surgery requires working with scar tissue instead of the healthy tissue in the first surgery. I asked if I would have this problem if I'd had a tissue valve instead of the mechanical valve? he said clearly I would not. I asked if there's a way to fix the pounding problem with padding? he said no. He does not think introducing material to try to insulate the valve is a good idea and probably wouldn?t even work. He said while I'm a thin frame patient, my valve isn't too close to my sternum. He said I'm already on a good dose of the beta blocker Metoprolol so there isn't anything more to be done to reduce the pounding through medication.

While my problem is made worse because of problems with anxiety he said the condition would be enough to drive anyone crazy no matter who they are or how mellow they may be. This was refreshing because in all our previous meetings the message was basically "this kind of thing happens, it will get better, you'll get used to it, it's only a problem if you make it a problem, deal with it." Since it's been 8 1/2 months since the surgery, and there hasn't been any improvement, his hope that the formation of scar tissue would reduce the pounding has been shown to be false. Now he has to admit what I knew all along.

So, what to do? Ultimately he suggested hypnosis and yoga. That's right, a surgeon recommending hypnosis. He is going to look into hypnosis for me and I'm supposed to look into the yoga angle. If I don't have the valve replaced then what's left except a mind-over-matter approach? Probably nothing. There's no good answer or solution, it's very sad. At least now he is finally being honest and looking for some type of help instead of deflecting my situation. It's not much, but it's something. I'm less angry with him and more angry with St. Jude.

My original post:
http://www.valvereplacement.com/forums/showthread.php?t=28944

 

[Jkm7]

I'm so very sorry to read this, Seth. What a predicament.

Has your surgeon spoken with folks at St. Jude? Certainly would love to hear what they have to say.

Sending you very best wishes something can give you relief.

 

[kfay]

Seth, I didn't ask you this in our pm's, but does it bother you enough to consider replacement if the yoga/hypnosis doesn't work? Or are you content enough with things to let it be? Just curious. What does your wife think?

Kim

 

[vprnet]

Seth, if my doctor told me there was someting wrong with my valve, I'd want to know what he means by that and what that could mean for the long run. Maybe you should contact the St. Jude as well.

Vince

 

[hall]

I'm so very sorry to read this, Seth. What a predicament.

Has your surgeon spoken with folks at St. Jude? Certainly would love to hear what they have to say.

Sending you very best wishes something can give you relief.

Good idea.....contacting the people at St. Jude. I too would like to know what they say. Best of luck

 

[blkrino]

Seth I think a third and fourth opinion is maybe required. Once you are as informed as you can be about your valve go talk to (I hate to say this but) a lawyer to make sure any repair or new replacement is covered by the doctor or hospital.

 

[Bridgette]

So what the surgeon is saying is that the actual valve itself is faulty, and this problem has nothing to do wth your body shape, frame etc?
Gosh, for him to say that more or less leaves the door wide open for you to take action against the manufacturers

Seth, it is a horrible predicament and I really feel for you. I don't have any answers or advice but just hope that something can be done for you, not sure what

I had my share of post op complications and I know how upsetting they can be...it's awful.

Take care
Bridgette

 

[Eva]

Oh Seth!

I was wondering about you and if you had seen other surgeons/cardios for other opinions?! Almost sent you a pm last night. This is disappointing news and I feel sorry for you and no one should accept this...I would still seek other surgeon's opinions until I get a good convincing meaningflu promising answer...was 'nt this particular valve tested before?? I doubt that! or the surgeon did something wrong in stitching it or ???
I would (1) test that surgeon to see if he is telling the truth by mentioning that you may sue St. Judes! and see his reaction; and (2) talk to St. Jude to verify the truth. If you like, I can ask my surgeon if this is true. Send to me, if you like, in pm, details and I can try to seek his opinion for you. I can also ask my niece's hubby in France, a top-notch cardio who decides when surgery is due and goes to all conventions for developements in heart surgeries and for new valves, etc.

Sorry you had to go through this frunstrating consistent noise...Did he mention a chance to be less annoying if you put on some weight?!

Keep us posted, Seth, and Good luck and will keep you in my prayers.

 

[ChouDoufu]

i was looking through your previous valve pounding thread and saw your ct scan.
your valve is only 2.7 cm from your sternum. has anyone replied with their
measurements? any idea what 'normal' would be for various body types?

so if yours is closer, would the pounding/thumping and what you described as
"the sound of the bone being struck by something hard" have anything to do
with how your sternum was wired together? any chance you could be vibrating
your wires against the bone?

 

[WayneGM]

Sorry to hear about your problem, Seth. I echo the advice about getting other opinions and contacting St. Jude. I'd want other opinions on whether it's likely a problem with the valve or an outcome of the surgery, and whether they thought there would be any potential long run consequences. Best wishes and good luck.

 

[dtread]

If you haven't already, you might want to get an echocardiogram to see whether there is some problem with the valve. Then, perhaps there are audio tests that could be run comparing your valve/heart sounds/vibrations with others with exactly the same brand/type of valve.

If the valve is indeed faulty, then it should be replaced (i.e., reoperation).

If the valve is not faulty, then a tissue valve is a solution, but of course that also means a reoperation. If you don't want to have another operation, then you are left with alternatives such as biofeedback, acupuncture, herbal medicines, hypnosis, guided imagery, etc.

I'm wondering whether the beta blocker is really helping lessen the thumping sensation, or is it increasing the sensation? Some persons on large doses of beta blockers have reported some side effects that are not so nice.

A number of VR.com members have noted that their mechanical valves have gotten quieter over time. Whether this is just "getting used to it", or the heart adjusting to the wider, better functioning opening, or the valve actually "seating" or "getting broken in", or a combination of these factors I do not know. But this does seem to be the case. So perhaps yours will get better in time. There was a member that posted on VR.com that indicated that there was no way that he would consider a mechanical valve because he was very sensitive to any kind of ticking sound; e.g., like a clock, so he got a tissue valve.

Hope you get a resolution one way or the other.

 

[seth]

Thank you to all for your support. Making things even more stressful I was laid off two weeks ago from a job I'd been at for over 10 years. Not thinking life is real fair right now.

Yes Kim, it bothers me enough to consider a replacement. I asked my wife her opinion, she doesn't like me having another surgery when there's no guarantee it will solve the problem, maybe the next valve will have problems too. And if I get a tissue valve, then what? I could be looking at three OHS in a span of eight to twelve years. She says it hasn't been a year yet and she keeps hoping with time it will get better on its own.

About St. Jude and the valve: My surgeon called up St. Jude very early on, described the situation and inquired if they had received any reports of other patients having this problem. They told him they had none. Since my surgeon has finally admitted my condition is unique, perhaps I was just unlucky and got the one "door slamming'" valve out of a thousand. I have no way of knowing. However, I seriously doubt St. Jude would ever admit to receiving complaints. There would be no benefit to them to make such an admission either to a surgeon, or to a patient. They would probably have to be confronted with evidence from multiple cases to force a response - like an investigative reporter - and I'm sure even then they would argue their valves meet adequate standards.

I've looked up St. Jude Medical mechanical valves on the FDA website and found lists of injuries and deaths related to the valves. Things like cracks, leaflets getting stuck or completely falling off and getting lost in the patient. I've sent emails to St. Jude asking for more detailed information about my valve and also who I can speak with at SJM about my condition. I've yet to figure out exactly what my purpose and approach will be. As far as legal matters are concerned that would be for another time, and another post.

My surgeon didn't say something is "faulty" or "wrong with the valve". He said that my condition is real, it is unique, it would be difficult for anyone to deal with, and he thinks it is caused by the hard closing of the valve. All of that taken together it's easily to form the opinion that the problem is because the valve isn't functioning as what is typical. I'd call it not normal, or simply say something is wrong. As several of you pointed out I need to ask about what this means for the long run... what are the potential long term consequences. This would indicate doing some testing to really find out how the valve is functioning. Four months after my surgery I had a echocardiogram and combination stress-test-echocardiogram which came back normal. It would be good to have someone reexamine that test with a mind toward the exact functioning of the valve and consequences down the road.

Regarding my own unique biomechanics and the valve, my earlier post requesting other people's measurements came up empty. Nobody gave any. Since my surgeon has called me a "thin frame" patient, I asked him what's the typical distance from someone’s sternum to their valve? he held up two fingers indicating about 3-4 cm. I showed him my CT scan and the 2.7 cm measurement from my sternum to the valve and he said the measurement is fairly typical and my valve is not unusually close to my sternum, i.e. that's not what is causing the pounding. Personally, I think it contributes to the transmission of the pounding more than would be the case if I had a 4 cm measurement. As far as the wires vibrating against the bone... I hadn't thought about them being a contributing factor. I did notice in the CT scan that there's a sternum wire exactly at the same level of my valve.

I have a follow up appointment with the surgeon on March 9.

 

[bookjp]

Seth I don't have any real answers for you.I just hope that when you meet with your surgeon you get your issues resolved.I wish you the best and sorry to hear about your layoff.Keep your head up and things will get better.Good Luck!!!!

 

[Eva]

Keep us posted. Sorry about your job loss, but I always believe that when a window is closed, a door will be open!

 

[Ross]

I've looked up St. Jude Medical mechanical valves on the FDA website and found lists of injuries and deaths related to the valves. Things like cracks, leaflets getting stuck or completely falling off and getting lost in the patient.

Could you perhaps post a link to these studies?

 

[WayneGM]

Sorry to hear about the job loss. I know how that feels as I went through a period of unemployment after 22 years with the same employer and 9 years in the same job. However, I ultimately found a new job doing something different from what I was doing. Sorry this compounds the stress from your heart issue, too. Best wishes and good luck for resolutions to both problems.

 

[Thwdp]

Seth

I was very interested to read this post. I am literally 6 weeks post op this week and due to complications I have only been one a week. But since I got home i have had a pounding which mostly occurred when I lay down but now seems to be with me more and more. I am not a thin frame in fact could do with loosing some weight (maybe that is the the issue) but the pounding is very worrying.

I had a check up this week and ECG was done and xray and both seemed fine and my surgeon was happy - and said the pounding was nothing to worry about but I should probably look at the dosage of the sotalol and lozartin I am on (I need to look into these more but I think they are the Beta Blockers and Ace inhibitors they have me on).

He was not unduly concerned and said I should look at loosing weight as my main concern (6 foot 2 inches at 97kg).

If you get more info on this please let me know as it sounds very similar to my situation.

 

[Faye]

I also have a thumping heart. I have an On-X valve. My cardiologist has ran many tests to determine the cause and can't find anything wrong. He did mention that I could be more sensitive to the thumping/pounding because I am thin.

It has been almost 18 months and I notice it less as times goes on but it is still there. I'm waiting for the day that 24 hours pass and I don't think about my valve.

Take care and try to think of the thump as a reassuring sound/feeling.

 

[ALCapshaw2]

A "Pounding Heartbeat" is NOT uncommon following OHS, *especially* if the heart was pumping against a Stenotic (Aortic) Valve. This condition is exacerbated if the Heart became enlarged.

SO, my first Question for the Surgeon would be:
was my Heart Enlarged prior to Surgery?

If so, then I would want to know if the enlargement had reached the Permanent Stage.

IF your heart muscles were conditioned to Pump Hard against a Stenotic Valve, then they will continue to 'Pump Hard' after surgery, "even with" the new, bigger, and lower gradient valve. (and even with another replacement valve)

HOPEFULLY, your heart will "recondition" itself to not pump so hard. Some of our members have had this happen, but it Takes TIME, maybe even a Year or more.

You may want to start a thread about Heart Muscle Reconditioning and hopefully someone who has gone through this will come along (or do a Search for such threads).

As others have suggested, more opinions may be worthwhile. I would NOT undergo another surgery until your Doctors have a better understanding of what is causing your condition (and KNOW whether it is your Heart or the Valve that is causing the problem).

'AL Capshaw'

 

[ALCapshaw2]

A "Pounding Heartbeat" is NOT uncommon following OHS,
*especially* if the heart was pumping against a Stenotic (Aortic) Valve.
This condition is exacerbated if the Heart became enlarged.

SO, my first Question for the Surgeon would be:
was my Heart Enlarged prior to Surgery?

If so, then I would want to know if the enlargement had reached the Permanent Stage.

IF your heart muscles were conditioned to Pump Hard against a Stenotic Valve, then they will continue to 'Pump Hard' after surgery, "even with" the new, bigger, and lower gradient valve. (and even with another replacement valve)

HOPEFULLY, your heart will "recondition" itself to not pump so hard. Some of our members have had this happen, but it Takes TIME, maybe even a Year or more.

You may want to start a thread about Heart Muscle Reconditioning and hopefully someone who has gone through this will come along (or do a Search for such threads).

As others have suggested, more opinions may be worthwhile. I would NOT undergo another surgery until your Doctors have a better understanding of what is causing your condition (and KNOW whether it is your Heart or the Valve that is causing the problem).

'AL Capshaw'