Should I be more concerned? Help!!

[Barbra]

Hello everyone - Very overjoyed I stumbled across this site! (Newbie !) I am hoping to get some feedback on some questions I have. I am a 44 y.o. Female with AS/AI/AR. I had my bi-cuspid valve repaired at age 9. I do not have my latest measurements in front of me and feel really stupid that I haven't taken the bull by the horns and figured out what these numbers actually mean. All I know is that I have not seen my Cardio for about 1 1/2 years. Up until several months ago my symptoms were the usual suspects-- slight SOB on exertion, hearing my murmer when my head is on the pillow... nothing bad at all. Over the last several months I have had several major dizzy spells laying, standing, and walking. Also a feeling of pressure in the center of my chest- like I want to keep burbing and last but not least my head is constantly pounding. I called my cardio and she can't get me in until Feb 19. I called my internest and he said my symptoms (dizzy spells is what I told him) did not sound like they were related to my valve. My question is this.. Are the dizzy spells while laying down and also just standing upright with no exertion indicative of AI/AR? My cardio is not seeming too concerned and my Gen. MD says he thinks I'm having panic attacks. Oh, also sometimes I feel like my limbs are really heavy...??
So- should I just go through the ER? I have a husband, 2 kids, 3 dogs, and 4 horses to take care of... I'd prefer to error on the safe side but I don't want to over react either. I would really appreciate feedback! Thank you!!!

 

[Barbra]

Sorry- One more thing.. I've heard once symptoms start one will go down hill quickly. Is this true?

 

[Bill B]

The rate of progression of symptoms is individual, not necesssarily rapid. Still, if I had what you are experiencing, I'd want it checked out fairly soon, whether valve-related or not. Even your GP should be able to tell if you have physical signs of cardiac problems versus unrelated causes of dizziness and chest pressure. And if so, I cannot understand how your cardiologist couldn't find a spot for you, such as a cancelled appointment, if you are able to go on relatively short notice OR perhaps have a partner or nurse practitioner in the office check you over. Has the SOB changed?

 

[Barbra]

Hi Bill-
I have not done cardio exercise -( I do Pilates) in a while but I'm getting out of breath sooner than usual when I am riding (horses, climbing stairs, etc.). My problem is these symptoms- dizzy spells and various chest discomforts are intermittent. When I told my GP he said he thinks I'm having anxiety/panic attacks... Problem is I don't feel anxious. I did get put on the cancelation list at my cardio so if something opens up they'll call. If I'm having heart symptoms would they be so intermittent? I've had several days where I have felt fine. I'm hoping to make it until my appointment in Feb, but if I have any severe symptoms I'll have to go through the ER.

 

[epstns]

Barbra - I'd agree with Bill B. I would again call the cardio and express your concern, asking where you can be seen/evaluated prior to mid-February. If nothing else, you need this for peace of mind. I know my cardio has "ways" of fitting in another patient many days - especially for one of us he has been monitoring for a while.

Also, welcome to the family. There are quite a number of vr members here in the Chicago area. We try to get togethre a couple of times a year, just to catch up on everything. Watch the boards here for the next one. (Cort is planning an "Post Surgery Celebration" in another thread. )

 

[Cooker]

Welcome ... we know our bodies better than anyone ... if you have concerns get them checked, push the issue if you have to.

 

[Barbra]

Thanks Steve. I am very glad I found this forum. It helps reading all of the success stories.

 

[Mentu]

Barbra, welcome to VR. Part of the difficulty we experience at times is that, without any definitive testing, the symptoms may be caused by other things and our doctors will often look for more simple source. In years past I had two episodes of BPV (benign positional vertigo) which is dizziness caused by the displacement of the microliths in the inner ear. As my heart valve began to degrade, I thought I was just having a recurrence of the BPV. It happens when lying down, standing or moving; it is associated with moving the head not posture. Panic attacks can also display or mask symptoms. The only way to know for sure is for your cardiologist to run tests and reevaluate your condition. Likewise, this is the only way for you to find some peace of mind. I would call the cardiologists office frequently to check about getting in to the office sooner.

As for rapid change in one's heart valve as it degrades, I can say that this happened to me. For about eight years, I had no symptoms then I began to feel lethargic and sometimes short of breath with activity. During the last year before my AVR, in just a few months, I went from feeling reasonably good to feeling quite ill most of the time. Just as others have discussed here in VR, my surgeon said this is common - that the valve degrades more rapidly as time passes. Still, you can only know for sure by getting yourself checked.

The good news that we here in VR can offer is that recovery is usually not as difficult as you can imagine. Our imaginations are capable of constructing awful scenarios; the actual experience is likely to be far better.

Larry

 

[escargome]

Barbra, is your cardiologist a one-man office? If not maybe you could get in to see an associate before your Feb 19th appointment. Many of the symptoms you describe were ones that I too experienced. However, since they weren't an everyday thing, the denial part of my brain dismissed them as getting old. So long story short, hospitalized in Jan 2008 for non heart related problem, but hospital cardio nearly jumped down my throat about getting my valve replaced. Five months later did just that. However, denial was still ticking away and I had three opinions before getting the surgery completed. Wish I had not been so stubborn.

 

[Lynlw]

Barb, Do you go to a cardiologist that specializes in Adults with CHD? If not you probably should look into it since you had surgery as a child. If you arent already maybe they could get you in earlier.

 

[tobagotwo]

From your description, you should see your cardiologist as soon as possible. Doubt going to the ER would help much, as you need an echo. Tell Hubby he'll need to "man up" and get used to taking care of himself and the kids for a while.

While each person's case runs differently, when you start getting to the state where action is needed, the common wisdom is, "the worse it gets, the faster it gets worse." You have a variety of possibilities that could be making your valve symptoms worse, and most of them are warning signs that the valve needs attention. Near surgery time, symptoms are often the overriding factor in the decision.

Please get this checked out very soon.

Best wishes,

 

[Superbob]

From your description, you should see your cardiologist as soon as possible. Doubt going to the ER would help much, as you need an echo. Tell Hubby he'll need to "man up" and get used to taking care of himself and the kids for a while.

While each person's case runs differently, when you start getting to the state where action is needed, the common wisdom is, "the worse it gets, the faster it gets worse." You have a variety of possibilities that could be making your valve symptoms worse, and most of them are warning signs that the valve needs attention. Near surgery time, symptoms are often the overriding factor in the decision.

Please get this checked out very soon.

Best wishes,

Barbra, I, too, wanted to welcome you to this forum, and I heartily (no pun intended) endorse this Tobagotwo post -- please do insist on getting this checked out right away. All best to you and keep in touch with us.

 

[Barbra]

Bad night tonight- I was really feeling okay today... Very sleepy but no pain, pressure or dizziness. Tonight I'm feeling lots of pressure. It feels like center of my chest is collapsing- like a hollow feeling. I'm guessing if I head to the ER tomorrow at Northwestern my cardio would order an Echo. I called again today and no cancelations before my Mid Feb. appointment. Has anyone ever experienced this "need to burp constantly" feeling or head ache/pounding sensation as pre surgical symptoms?

 

[epstns]

Well. . . I did experience the nasty bloating thing. In my case it is not related to my heart, as I am still fighting it almost a year after surgery. We're looking into other causes, first stop to check GERD. I have been taking meds for that, and after a while I get bloating, abdominal pain, etc., from the meds and have to change to another one to control it. YMMV. My abdominal issues may be related to gallbladder, stones, etc., but we're still not sure.

 

[Barbra]

Thanks Steve- I came into thE ER this AM... Waiting to see what they're going to do with me.

 

[escargome]

Good Luck Barbra. Hope someone can get this all sorted out. Steve did have a good comment. Maybe GERD is what is bugging you. I also had that need to burb feeling but it had to do with my gall-bladder which was removed. Will be thinking about you. keep us posted

 

[Barbra]

Been in ER since 6:30 this AM. No rooms. The want to keep me over night so I'm just waiting for a room to open.glad I came though because I'm having lots of chest discomfort.

 

[Duffey]

Been in ER since 6:30 this AM. No rooms. The want to keep me over night so I'm just waiting for a room to open.glad I came though because I'm having lots of chest discomfort.

Sounds like a good plan.:smile2:

 

[Bina]

Been in ER since 6:30 this AM. No rooms. The want to keep me over night so I'm just waiting for a room to open.glad I came though because I'm having lots of chest discomfort.

When I was having the same symptoms that you are describing, my doctor told me to go to the ER if I felt that
I would not make it to my next surgery consult.
At that time I didn't have my old horse anymore, but I had previously been near to fainting while cleaning
out his stall and I would stop and sit in a chair until it passed. Way too dangerous to croak in my barn alone,
so I had another echo at the surgeon's hospital and he booked me 12 days later. My valve area was at .8
and with a ton of symptoms that I was trying to deal with. It's not worth the risk.
Best wishes !

 

[Cris N]

I hope that your hospital visit will give you some answers and some piece of mind as well. The reaction of your GP irritates the daylights out of me. How many women have suffered irreparable damage because some idiot doctor thought - Woman - must be a panic attack? Jeesh.