I dont know what to do???

[Robyn10217]

All I keep hearing from doctors is that they dont know. I have been seeing cardiologist at mayo clinic since april for my 19 mm mechanical valve. I have been having high gradients on my echo for over a year now and they are not sure why this is happening. The problem is when I am symptomatic my gradient is at its worse which is expected but its not all the time. The pain goes away, then the gradient goes down. They dont know why this is happening. I do know that I get chest pain everytime I do physical work. But when I explain this to doctors they look at me like Im crazy... I am currently doing chemo for my lupus, and that is now undercontrol but the chest pain is still horrible. I am so frustrated with mayo.. I going in circles with them, doing test and tests... my rheumy is sending letters and trying to find out more info trying to see if we can go another route or even just do surgery and put in a bigger valve... I know it sounds crazy but should I go somewhere else???

My gradient ranges from 48-55 not feeling my worst...

 

[epstns]

Robyn,

What tests have been done? There are a few that might give the doc's a view of what's happening with your valve. It almost sounds like there is something that intermittantly interferes with the free opening and closing of your valve. When the interference is there, gradient goes up. When it clears, gradient goes down. The chest pain might or might not be directly related to the valve, as there are numerous potential causes of the pain. I have no experience with Mayo, so I don't know how their evaluation processes work, but I would definitely want to be sure that you get the most complete evaluation that can be done. There may be multiple issues at play.

If all else fails and you do not get answers, perhaps have copies of your files and test results sent to Cleveland Clinic for evaluation.

Please note that I am NOT a doctor or medical professional -- just a concerned member.

 

[Jkm7]

So sorry you are experiencing all this. I totally agree about gathering your test results and sending them to Cleveland Clinic for another opinion.

Wishing you the very best.
Please let us know how you progress.

 

[dick0236]

It is never "crazy" to seek another opinion if you develop a mis-trust in your current docs....although you would think the cardios at the Mayo Clinic would be among the best around.....BTW, I gave up trying to interpret medical test numbers a long time ago...that is what I pay the Professionals to do. My gradient, if we are talking about the same thing, was 117mm across my valve shortly before my surgery, and yet, I felt fine. As a lay person, I didn't understand the number then....and still don't.

 

[Robyn10217]

Well my first visit started with the normal echo aortic mean gradient was 50, I am have severe aortic stenosis, tricuspid stenosis, moderate regurg. then ekg, chest xray the normal work up. Next Day TEE mean gradient 55, they felt at this point maybe something could be blocking the leaflets of the valve, did a fluroscopy came back normal, did a cardio CT, showing pannus, vascular testing, at last a heart cath. During all my test something came up except my heart cath which u would think, ok thats it. Its the one of the most accurate tests but when I did the cath my symptoms where gone, chest pain, shotness of breath etc. all have seemed to have settled down. Which the doctors were aware of, they called off the surgery because of that test alone. This was in april, Since then and doing chemo my lupus has been under control but my chest pain has been worse and I have already been to the ER. When I went back in june, gradient was bad again as expected, all they told me is they dont understand and wanted to do a stress test and a cardio MRI. Im so frustrated, I felt like what I was trying to tell them they werent hearing me. I didnt another fluroscopy, came back fine and I went home. I know that sounds bad but I couldnt do it again, I knew they wouldnt get what they wanted and I would still be where I am now. Except now they will see me after my treatments and maybe they will do something. It is almost three years since my replacement, I didnt think I would have this problem so fast.

 

[djteako]

I have had similar issues in the past several years , with my gradiants being all over the place , one day fine , the next way up , etc , as well as the chest pain , shortness of breath . I have a 21mm aortic valve , that was put in 25 years ago , when I was 14 . They say I have definately outgrown it , and are just now going to replace it !!!! WOOOHOOO aug. 17th . They have also noticed a small abnormality on the aorta , right by the valve , which is sometimes visible , sometimes not . (they couldn't see it on the pre-op cath 2 weeks ago , but it was there on the ct angio in april) they figure it is an anurysm , and could be the cause of the intermittent chest pain . I wouldn't hesitate to get another opinion if you're not liking what the mayo is saying

 

[Ray Norsworthy]

I went through six different cardiologists before I finally found one I had a good rapport with. One of the first ones wanted me to have the surgery right then--that was over five years ago! Another told me I would be fine for another ten years, not to worry about it. That was a year & a half ago! These were supposedly top notch cardiologists & I will give them the benefit of the doubt & just say we didn't communicate well or perhaps they had a bad day. But still, I recommend anyone getting 2, 3, or even more opinions. After all, it's your life, not your car. Best of luck!

 

[Robyn10217]

I just want to thank all of you for the great advice.. this has help so much.. I will keep you all updated to what my next step is...

 

[kerri73]

Just wanted to say I agree with everyone else... I'm the Queen of getting 2nd opinions and/or switching doctors altogether. My husband makes fun of me. But I'm very proactive in my health. If you have a bad feeling or are frustrated, it's in your own health's best interest to see someone else just to either confirm what the Mayo is saying or to see it in a different light. Ironically, I was thinking about coming up to the Mayo for a second opinion... lol. Good luck and hope you find some answers soon!!