Newly diagnosed - symptom questions

[dg_moore]

Hello all - I have just been diagnosed with aortic stenosis and will be having HVR in the near future.

For years I have had a constellation of symptoms for which extensive testing, including an echo a few years ago, has never revealed a cause.

The symptom that prompted the latest echo, which revealed "mild to moderate" stenosis, was markedly increased shortness of breath over the past couple of months. I have had chronic minor shortness of breath for years, but never thought anything of it.

Now that I have been diagnosed, I'm wondering if my other symptoms could be related to the stenosis. In your opinion, might any of the following (these are mostly subjective, but I'll try to describe as clearly as possible) be related? If they are, I'm hoping I can look forward to some relief - these are chronic and have been going on for many years:

- chronic feeling of being "detached", with vision seemingly focused at horizon and difficulty concentrating on objects nearby (I liken this to the "thousand-yard stare" that Vietnam combat vets have described)

-related to above: chronic mild dizziness/lightheadedness

-frequent bouts of mild to moderate nausea/queasiness

-chronic need to clear throat

-constant tinnitus in both ears

-occasional mild headaches (relatively new to me - I seldom ever got headaches in the past).

 

[escargome]

First, I want to say welcome.
Now my 2 cents on your symptoms. Prior to my surgery, I mostly had shortness of breath some dizziness and migrane headaches every couple of weeks. Most of it I pushed off to getting old and out of shape. Oh well... I would suggest that you form a good relationship with your cardiologist. Prepare questions and get answers that help you to understand what if going on. If necessary get a second opinion. But always remember that the VR members are here to listen, support and encourage you. God Bless You

 

[Mileena46]

Had MVR in July 2009 with most if not all of your symptoms. I had only a couple of episodes of the detached feeling..one really really bad that it threw me into an anxiety attack. I don't know how to describe it except to say that it felt like I went down a long tunnel and was watching myself from a distance. VERY scary!!
Nausea was something I dealt with on a daily basis. I begin to try and eat smaller meals, and if I ate before going to bed I had to get up and reguritate before I could sleep, during this time my heart was often either out of rhythm or throwing major PVCs. Once I emptied my stomach my heart would slowly calm down.

Constant dizziness! My world was NEVER EVEN! I had double vision, I had halo migraine. I had two episodes of rotational vertigo that I still have anxiety about...you never want to experience this! BOth times I woke up in the night in a total tailspin!!

Don't recall the throat clearing, but def had ringing in the ears. I was under a ENTs care for that and the vertigo. He was treating me for inner ear. I also had a hearing test done because the ringing was so loud I was SURE it affected my hearing. I passed that test, as my hearing was perfect.

Since surgery....all of these things are behind me....excpept I do still notice some ear ringing though it doesn't bother me as much. The best part is my constant dizziness is gone...for the first time in many years my world sits on a normal kilt. After 18 months have had NO double vision or auras....but do still have to watch what I eat before bedtime and how long.

Good Luck and hope this helps.

Mileena

 

[dg_moore]

Thanks for the replies - I have a cardio consult in a couple of weeks and plan to take my list along.

Dave

 

[Marguerite53]

Welcome to our wonderful community. With Mild to Moderate Stenosis, you may have a long wait ahead of you before you need surgery. These people here will help you to stay sane!! My wait was 3 years once the 1.0 cm sq aortic valve measure was determined. It has now been almost 5 years and I've just about forgotten which symptoms I had, or which stayed with me. I am just so completely and daily grateful to be alive and continuing with my life.

Many of us struggle with questions and causes and search for answers and reasons. To some degree, it is a futile enterprise. So while I strongly support taking all your questions to your doctors, any and every time, I do want to console you up front -- there may be no definitive answers for you! And if there aren't, try not to let it worry you. Our bodies are complex and individual entities. We each put in and do with them multitudes of different things. The journey through this heart mending will teach you many things about your body. Many, many! Accept changes and be willing to scrounge around (here is a good place!) for helpful suggestions. We've all felt things, emotionally and physically that doctors can't seem to explain. We get it, though! We really do.

Again, welcome to VR.org. We're glad you found us!

Marguerite

 

[dg_moore]

I'm 67 and have been feeling awful and functioning poorly for the past couple of years. If replacing the valve will help me feel better, I would do it this afternoon.

 

[DebbyA]

Welcome to the forum! Is your valve replacement already scheduled?

Your "detachment" symptom was interesting. I had something sort of but not quite as you and Milena describe, and it has gone away. The dizziness could very well be a symptom the new valve will take care of. I wonder whether some of your other symptoms could be from your blood pressure medication? The queasiness and throat clearing could be reflux, which might be caused or aggravated by some BP meds. All speculation. You will most likely feel and function better (after you recover somewhat) after valve surgery, even of the entire list doesn't disappear.

 

[dg_moore]

My internist thought some of that might be medication related, and we changed my meds many times but it didn't make any difference. I'm now on Tekturna alone, which gives me good control and - at least - doesn't make the symptoms any worse.

 

[Lynlw]

I'm 67 and have been feeling awful and functioning poorly for the past couple of years. If replacing the valve will help me feel better, I would do it this afternoon.

Welcome. Do you have copies of your echo report with all the measurements ect? If not you might want to get them. Also do you know the results of the echo you had a couple years ago? That could help in seeing if your valve is getting worse or pretty much staying the same. As Margurite said with mild-moderate stenosis they may not recomend surgery for a while.
Alot of deciding when to operate could depend on the other measurements of your heart, the size of your left ventricle, pressures ect so the more information you have the better.

Have they recomended any other testing to get a look at your valve, like a MRI or CT scan? Sometimes echos don't give the most reliable measurements and can depend alot on the tech performing the echo, so your valve may be better or worse than it looks on your echo.

 

[dg_moore]

I'm at the beginning of this road. I spoke to the Cardio who read my echo last week and have an appointment to see him for workup and exam shortly. At that time I will get all of the details, test results, and recommendations. From the symptoms alone it is pretty clear that the condition is worsening. The doc told me this is not an emergency, but should be taken care of before it becomes an emergency.

 

[bigsidster]

Make sure the rest of your body is in good condition prior to surgery and you should be fine.I had the aortic valve replacement because of stenosis and double bypass.I also had most if not all your symtoms,including the ear noise .The symtoms have all vanished 5/6 weeks after surgery.I stress to make sure the rest of your body is in shape because that is where most of my problems came from.

 

[dg_moore]

I'm in pretty good shape - I need to lose about 30 pounds, but otherwise - for years I have exercised vigorously for at least an hour a day, including walking, cycling, rowing machine, Total Gym, and free weights. I'm quite strong and my endurance is good (except for SOB due to stenosis). I'll work more diligently on the weight loss before surgery.

Thanks
Dave

 

[Greg a]

Dave/DGmoore, a heart felt WELCOME to our OHS family glad you are getting the information that you are seeking and there is swealth of knowledge here for the future .....


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf[/

 

[normofthenorth]

dg_moore, it sounds as if you've got reasonable grounds to believe, and hope, that either most or all of your nasty symptoms will be ameliorated or eliminated by a HVR. My relationship with my cardiologist since I met him ~6 yrs ago was one where he was pushing me toward surgery and I was delaying, while having fun with no symptoms. Your relationship with your cardiologist sounds very different, and maybe even reversed. At 67, and already experiencing symptoms, I don't think there's a compelling reason to wait, with either kind of valve planned/chosen.

 

[dg_moore]

Agree - when I look back at how long I've felt lousy, and assuming undiagnosed stenosis may have been at fault, I regret not having a diagnosis sooner. I'm ready to roll...!

Thanks
Dave

 

[Michelle D]

I had reguritation of my mitral valve so but after surgery it was mildly stenoic and has since relaxed a bit into a mild leak. Anyways before surgery I was dizzy, short of breath and my legs and arms would fall asleep and go numb very very easily. I had cold feet from poor circulation. I was diagnosed with ADD though I am getting back to normal now. So a malfunctioning valve can have all kinds of symptoms.

 

[dg_moore]

Interesting. I have had unexplained symptoms for many years, and my internist has always paid very close attention to my heart function, but not until very recently was the functioning degraded enough to be diagnosable. I wonder if the symptoms might have been associated with poor heart function all along. I guess I'll find out soon enough - if they are reduced, or better yet gone, then I'll know. Thanks for your reply!

 

[ALCapshaw2]

I'm at the beginning of this road. I spoke to the Cardio who read my echo last week and have an appointment to see him for workup and exam shortly. At that time I will get all of the details, test results, and recommendations. From the symptoms alone it is pretty clear that the condition is worsening. The doc told me this is not an emergency, but should be taken care of before it becomes an emergency.

It sounds like your Cardio is 'up to date' on the latest thinking that 'Sooner is Better' for Fixing Heart Valve problems. If you want a second opinion, I recommend that you get one from a Surgeon.
Surgeons like to Fix the problem before there is permanent damage to the heart muscles and walls.
FYI, Valve Replacement patients represent only a small percentage (typically 10%) that most Cardiologists see. The most experienced Valve Surgeons are typically found at the Major Heart Hospitals such as Johns Hopkins in your state. Good surgeons consider both your 'numbers' and symptoms when deciding when to recommend surgery. It sounds like you are ready. Having a positive attitude towards surgery is a Big Help towards a smoother recovery.

Best wishes,

'AL Capshaw'

 

[epstns]

Dave,

These stenotic valves can be progressing for many years before they make enough noise to be diagnosed. I went through a similar process to yours -- I knew I was feeling worse as the years went on, but couldn't get my internist to find anything. Finally, at age 52, I convinced her to refer me to an endocrinologist to evaluate me to see why my energy level was decreasing so much. (So much to me -- I had been running 7:30 miles for years, and was starting to have to slow down more than I thought I should.) The endocrinologist found nothing wrong except he asked me "How long have you had this heart murmur?" This was the first I heard of it. He advised me to have it evaluated asap. A visit to a cardio then lead to a diagnosis of moderate to severe aortic stenosis. I have been dealing with this for the past 8+ years, finally slowing down now to the point where I've scheduled surgery for March 1.

One thing my cardio told me -- "I won't have to tell you when it is time for surgery. You will tell me that you are ready." He was right. Be aware of your body and be your own advocate. If you don't feel comfortable with a doctor or his findings, get another opinion. You've known your body for a long time - they have just met you.

 

[dg_moore]

OK - (Im the OP in this thread). Had left/right catheterization yesterday with unexpected results. The cath showed, contrary to the echocardiogram on which aortic stenosis was diagnosed, there is absolutely nothing wrong with my heart. The arteries are clear, there is no detectable calcification of the aortic valve, and the pressure gradient across the valve is 0. I am relieved that I do not need heart surgery, but at the same time disappointed because I was hoping that fixing my heart would relieve my symptoms. I have had, I think, every test known to man, including evaluation at the Johns Hopkins Vertigo clinic and extensive neurological testing, all negative. I have a new cardiologist who is interested in helping me track down the cause, but I imagine that - after yet more tests, etc. - he will shrug his shoulders just like 6 or 7 other specialists have done over the past few years.Onward and upward...:frown2: