Need help - possible issue with on-x aortic valve replacement from 2010

[Olive]

My husband, 34 years old, had his aortic valve replaced in October 2010. He also had about 5 inches of his ascending aorta replaced with a graft.

About 4 months ago, he began suffering from daily headaches, lightheadedness, periodic numbness on one side of his face, and about 2 weeks ago the tinnitus started (ringing/squealing sound in ears).

He has seen a neurologist and been given countless migraine treatments (none worked).

He has had an MRI and an MRA of the brain - results are normal.

He wore a home heart event monitor for a month, no arrythmias noted.

He went to a new cardiologist last week. This Dr. said he heard a systolic murmer in his valve. He also said the two carotid arteries don't sound the same.

He also seemed to have a pretty poor opinion of the on-x valve, just because it hasn't been extensively tested. (as much as the St Jude valve).

He ordered an echo for Friday but needless to say I am freaking out. The Dr. casually said "the valve may need to be re-done". RE-DONE!?? Oh, just another day, another open heart surgery.

Does anyone have any thoughts?


(my greatest hope is that all of his symptoms are related to a TMJ disorder, he is seeing a TMJ specialist next week. From what I've read, TMJ disorders can cause all of his symptoms)

 

[escargome]

Welcome Olive,
While I cannot comment on the On-X valve as I have a tissue valve, the only thing I can say is to try and hang in there. It is possible that it could be a number of things causing his symptoms, but I find it a little off putting to have his cardiologist say right off the bat that he may need a replacement without further testing (Just cause he doesn't favor On-X valve), it doesn't mean it has failed. Just take it one day at a time and see what the test results turn up. Additionally, if you or your husband still are not comfortable, and it is possible find another cardiologist who is more informed related to the On-X valve. I hope all works out well for your husband.

 

[Eva]

I agree with Chris. Hang in there until you get the results of the echo.

When was the last echo done and was there any difference from the previous ones.
I always ask for copies of any lab work to compare the results myself and to have handy if I needed to seek a different opinion.

Keep us posted.

 

[Olive]

Thank you both so much.

I agree that the Dr. was a bit hasty in his "diagnosis". He seemed slightly arrogant, with a "I've been doing this for 30 years and I know everything" kind of attitude. I'm willing to give him a chance, though, mainly b/c he is the director of the cardiology imaging dept at a major hospital and probably does know a lot.

My husband had an echo (it was even an intra-esophogeal echo) last year and the Dr's said everything looked great. He also had a cardiac MRI which the Dr's didn't agree upon. It is a long story involving many Dr's - he was hospitalized for diverticulitis and was on telemetry monitoring and the monitors noted some v-tach. So they did an MRI on his heart. His cardiologist at the time said the MRI was fine, even though the hospital cardiologist that did the MRI said it wasn't.

After that v-tach diagnosis, we went to a cardiologist that specialized in arrhythmias - he is the one who put my husband on the month-long home event monitor.

The reason we are now going to yet ANOTHER cardiologist is first, we wanted a 2nd opinion, and especially since his headaches have yet to be figured out.
So now 2 cardiologists have reviewed the September 2011 heart MRI. One said it was fine, one said it wasn't. We'll see what this one says. I'm actually hoping he'll order another one.

 

[CATDOG]

Hang in there until you get more testing. Hopefully they will check more than just the heart--maybe some arteries too (carotid since they "sound different"). The headaches etc could be related to many problems, including valve or artery issues.

 

[normofthenorth]

I hope cardiac MRIs are more reliable than spinal MRIs.

 

[neil]

agree with catdog, hang on in there, your cardio sounds a bit of a .rick , cert has no people manners

 

[Superbob]

I agree with what others have said about the cardiologist -- may be a bit brusque .. bad "bedside"manners, but he may well be brilliant, too. I had a cardiologist back in Virginia who seemed like that initially but he turned out to be one of my best doctors ever. Hang in there, and get all the tests. There should always be the option of a second opinion if you need it. The symptoms can have many causes; they ought to be able to solve the mystery. Could be due to something relatively minor. Wishing you all the very best.

 

[Olive]

Thanks again. STILL have not heard back from the nurse - the Dr. hasn't even looked at the heart MRI I dropped off on 3/26. However, that MRI was done in September 2011, and his headaches started after that, so maybe that MRI is too old anyway. Maybe he should get another one.

Can an echocardiogram see if there are problems with his aorta and carotid arteries? Or do they not go that high?

I'm so worried.

Thank you all.

 

[catwoman]

Olive:
The cardio should order a sonogram of the carotids.

 

[Eva]

Hope you get some relieving answers soon. Keep us posted.

 

[scott.eitman]

I say get to a good, really good, heart hospital/clinic. I have never heard bad things about the On-X valve. It sounds like your cardio does not like change and therefore may not be up-to-date on medicine and medical procedures. Not all doctors are as qualified as each other.

 

[Olive]

Update: I raised a little hell over the phone at the hospital. The Dr. finally called me back and I must have conveyed to him how serious I am about getting this figured out ASAP. So he managed to take time out of his busy schedule to actually review my husband's echocardiogram immediately after it was done and he actually called him with the results (just a few minutes ago).

Here they are: he saw "something" behind the valve. He said it could be an infection or a suture. He says Chris (my husband) needs a TEE (trans esophageal echo) next week. (so they can see what it was from behind).
He finally looked at the chest MRI from September and said that there are nodes in his lung area. He doesn't know what they are and will order further testing. I think a CT, but I'm hoping another MRI, a more sensitive one, so that Chris can avoid more radiation.

He has theorized that there is an "outside chance" that it is sarcoidosis. This is an inflammatory disease that can cause problems in many organs, and can be responsible for many of the symptoms that Chris has.

This is supposed to be a great hospital. It is the University of Colorado Hospital. I don't know where else to go that would be any better. Hopefully they are as great as they say they are.

I am so very scared. I am going to call the hospital first thing Monday morning and BEG for a TEE ASAP. I'm also going to start praying.

 

[Olive]

Olive:
The cardio should order a sonogram of the carotids.

Thanks, I'll ask for that.

 

[tobagotwo]

Although the On-X has anti-keloid properties, nothing has ever entirely overcome the ability for people to grow scar tissue near the site of a surgery. While nothing's impossible, I'd believe the chance of it being the valve itself is exceedingly low. Issues that happen with mechanical valves are rare, and usually occur at or shortly after the original surgery, rather than later.

There are some bio;ogical possibilities. It could be scar tissue growing behind the valve, a suture which has come loose, a blood clot or piece of one, a tear in the tissue holding the stitching, infectious endocarditis (or the remants of an earlier infection), or any of a number of other things. Most are not immediately critical, so let's just hope it's one of those (or that it just disappears the harder they look for it).

Partially blocked carotids or even low blood sugar could also cause some of your husband's symptoms. Sometimes we look too hard at the heart and the valve because they were the source of trouble once before.

Best wishes for you and your husband,

 

[Julian]

Although the On-X has anti-keloid properties, nothing has ever entirely overcome the ability for people to grow scar tissue near the site of a surgery. While nothing's impossible, I'd believe the chance of it being the valve itself is exceedingly low. Issues that happen with mechanical valves are rare, and usually occur at or shortly after the original surgery, rather than later.

There are some bio;ogical possibilities. It could be scar tissue growing behind the valve, a suture which has come loose, a blood clot or piece of one, a tear in the tissue holding the stitching, infectious endocarditis (or the remants of an earlier infection), or any of a number of other things. Most are not immediately critical, so let's just hope it's one of those (or that it just disappears the harder they look for it).

Partially blocked carotids or even low blood sugar could also cause some of your husband's symptoms. Sometimes we look too hard at the heart and the valve because they were the source of trouble once before.

Best wishes for you and your husband,

I have to one up everything Bob has said. Chances of it being the valve are low but always still possible. The chances of it being something else beside the valve is likely to be the issue. I hoping for good results on the TEE and clear skies on the CT/MRI of the lungs... Probably CT though. Please Please Please keep us posted.

 

[bradvo]

Update: I raised a little hell over the phone at the hospital. The Dr. finally called me back and I must have conveyed to him how serious I am about getting this figured out ASAP. So he managed to take time out of his busy schedule to actually review my husband's echocardiogram immediately after it was done and he actually called him with the results (just a few minutes ago).

Here they are: he saw "something" behind the valve. He said it could be an infection or a suture. He says Chris (my husband) needs a TEE (trans esophageal echo) next week. (so they can see what it was from behind).
He finally looked at the chest MRI from September and said that there are nodes in his lung area. He doesn't know what they are and will order further testing. I think a CT, but I'm hoping another MRI, a more sensitive one, so that Chris can avoid more radiation.

He has theorized that there is an "outside chance" that it is sarcoidosis. This is an inflammatory disease that can cause problems in many organs, and can be responsible for many of the symptoms that Chris has.

This is supposed to be a great hospital. It is the University of Colorado Hospital. I don't know where else to go that would be any better. Hopefully they are as great as they say they are.

I am so very scared. I am going to call the hospital first thing Monday morning and BEG for a TEE ASAP. I'm also going to start praying.

Olive, good for you for being more demanding, I really don't like when the docs begin to throw very serious guess's out that scare the heck out of patients and spouses.

You got my prayers as well for you and your husband.

 

[Magnacruz]

Olive, I agree with everyone else that it could be almost anything. It might be good to ask the Dr to have a blood culture done so that Bacterial Endocarditis can be ruled out. It is quick and easy to do. Good luck to you and your husband.

 

[Olive]

Olive, I agree with everyone else that it could be almost anything. It might be good to ask the Dr to have a blood culture done so that Bacterial Endocarditis can be ruled out. It is quick and easy to do. Good luck to you and your husband.

Thank you all so much. I can't believe how supportive and kind you all are.

And to Magnacruz - they actually did draw 4 bottles of blood on 3/22. (blood culture bottles). And nothing grew, even 5 days later. I don't know how long they keep them, but everytime I talk to the nurse, she says "they're still negative". So I think they are confident it is not a bacterial infection. I sure hope not.

The doctor suspected that just because Chris had colon surgery for severe diverticulitis (rare for a 34 year old! who eats a lot of fiber!) in November. He was on very strong IV antibiotics for 6 weeks prior to the surgery. Then after the surgery, the headaches started. That was when he went for the 1st brain MRI. It was normal, except for what the radiologist thought was a possible sinus infection. They put him on Augmentin for the sinusitis, and that led to a subsequent overgrowth of a different bacteria in his colon . . . . so he had to go on a different antibiotic.

Anyway, after all these infections, plus the fact that Chris sometimes has night sweats, made the cardiologist consider endocarditis. He said he "might" do a blood culture in the future, and I was like "Uh . . . could you just please do it NOW??". So he did.

Thank you all again so much.

 

[kfay]

Olive, I'm sorry to hear that you and your husband are having so much stress with all of this and no one giving you definite answers at this point. Good for you for standing up to the Dr. though and demanding the care he deserves.

I want to tell you that I had terrible experience with headaches after my surgery too. They started about 6 or 7 days post op and they were terrible. I've had the lightheadedness, numbness on one side of my face, and tinnitus. I tried just about every drug for migraines (I had them before surgery, but they got 100% worse afterwards, daily in fact), except for amitriptylin, which is an old school anti-depressant but is supposed to be a great migraine preventive because it can also cause rhythm issues and I have those without it! The most helpful was topamax, but after about 8 months on it, the side effects became too much. I hate to tell you, but I suffered with these for 3.5 years after surgery. However, last fall, they started to get much better. I'm not really sure why, the only thing I did differently was add Botox (injected all over my head and neck) at the urging of my GP who had seen some migraine patients do better with it. I don't know if that's what did it, but they have been much better since then, with an average of about 10 headache days a month vs. 28 or so. I really feel for him with these headaches,it isn't a fun way to live. Tell him to hang in there and keep pushing for answers.

Kim