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

[Olive]

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

Thanks for sharing, and very glad to hear you're doing better. Chris took topamax, too, for a couple weeks, but had some weird mind-altering side effects. He's currently taking amitriptyline and gabapentin (plus of course, warfarin, and metoprolol). He even did a 2.5 day hospital stay where he was treated every 8 hours with DHE injection. (migraine treatment). Nothing.

Well, in 13.5 hours I will call the hospital and try to schedule that TEE for this week. Not that I'm watching the clock.

 

[Olive]

Well, the TEE & Chest CT with contrast were done today. The good news - the TEE did not show any problems with the heart, the valve, the aortic graft, nothing. The bad news - the chest CT shows several "nodes" in the chest. The cardiologist gave a "differential diagnosis" of sarcoidosis. Next step is to see a pulmonary specialist and get a biopsy of one of those nodes.

I'm frightened because the Dr. said the other possibility is lymphoma. The Dr. said that usually presents with additional symptoms that are not here but they are doing a blood test (LDH) anyway.

If is it determined to be sarcoidosis, that will not be great, but at least it will be a diagnosis. Unfortunately (or fortunately?) the brain MRI's he's had showed no evidence of sarcoidosis, so it is unlikely (I guess) that this diagnosis would explain his constant headaches.

So much is uncertain right now. I just wanted to let you all know what was going on, and to again, say thank you so much for all your support.

 

[bdryer]

It is very much appreciated that you have more or less closed this thread after discovery of the cause, which exonerated the On-X valve and the related procedure. I'm certain you had every On-X recipient on the rivet waiting for the results.

I am indeed sorry to read what in fact may be the cause of your husbands symptoms. He is lucky to have someone as caring and concerned as you. I wish the two of you the very best.

 

[Olive]

It is very much appreciated that you have more or less closed this thread after discovery of the cause, which exonerated the On-X valve and the related procedure. I'm certain you had every On-X recipient on the rivet waiting for the results.

I am indeed sorry to read what in fact may be the cause of your husbands symptoms. He is lucky to have someone as caring and concerned as you. I wish the two of you the very best.

Oh, absolutely. I would hate to have anyone worry that their current or future On-X valve could cause problems like this.

Thank you again. Off I go to a sarcoidosis forum. And if anything else comes up with his valve, I will come back and let you know.