jumping right in....

[bethanne]

I have spent the past few days reviewing the various threads... Lots of good information, but mostly I am drawn to the compassion and genuine concern all of you have for each other.
It is comforting in a strange way to find a group of people that feel freedom to be frank about what you are going through...

At this time I have alot of questions, and really don't know where to start. I was first diagnosed with a bi-cuspid aortic valve approx 7 yrs ago after I was going through careful examination after a car accident (it seems bizarre the murmur was not detected during four deliveries). The diagnose was confirmed after a TEE at which the dr. stated the classic you will need a valve replacement in 5-10 years...

To make this tale a little shorter, I found a cardiologist that i like alot at Methodist Hospital here in Houston, Tx. During my appointment last August, he stressed the necessity to make a decision based on test results of my echo versus symptoms...

In a strange way, I found this comforting to not feel the pressure of making a decision. I am scheduled for a follow-up March 3rd, as he has me on 6-month check-ups. I am a little anxious becuase I am not feeling well at all. It seems that I have been pushing myself to a point that I have finally said to my family.... I cannot do this anymore. However, I find it hard to trust my emotions/feelings/symptoms whatever you want to call it.

Have any of you experienced excruciating pain in your calves through to your feet while walking? I have been walking regulary with a friend twice a week for the past year. We have a small lake nearby... I am finding it harder and harder to finish my walk and friday I experienced an aching pain in my lower legs and had to slow down in order to ease the pain.

I guess what I am looking for from those of you who have gone through this, what would you describe to be the most tell-tale symptoms that you were near the time to have your AVR. My doctor seems to believe it is best to wait until it appears to causes stress to the heart. (enlargment, etc.) but yet, I have read many of your testimonies, where it wasn't until the actual surgery that the doctor realized your condition was worse than appeared from the test...

thanks for your help...

bethanne
Bi-Cuspid Aortic Valve
kingwood, tx

 

[Nancy]

Hi Bethanne-

Welcome to the site. You'll love the friendship and support you get here. I think you will find that most on this site feel that getting your heart fixed up BEFORE things get too far afield is the best thing. Sometimes when it goes on too long with the heart enlarging, the heart does not reduce like it would if you get it taken care of sooner. Once you start to have symptoms, and the tests show it's time, then you really should have your surgery.

Here is a link that shows the various valve problems and the symptoms:

http://www.tmc.edu/thi/valvetype.html

You have already said that you feel you cannot go on like this much longer, so maybe it's time to push for getting things fixed up.

Re: your leg pains. Are you on any diuretics? Some of them can deplete potassium, magnesium, and calcium from your system and cause cramping like you mention. It is also possible that your diminished heart function is causing a deficiency of oxygen in your blood which can cause your leg muscles to ache. Call your primary care doctor and discuss it with him/her.

Hope to see you hear often.

 

[fisher6476]

Hi Bethanne and welcome.

Hi Bethanne and welcome.

I have to agree with Nancy. My research told me that when symptoms present themselves it is time (maybe past time) to have the surgery. I think you will find many Cardiologists want to wait, but many surgeons feel the sooner the better. Clinically speaking I believe that Nabcy is right about "heart Failure" With a bad valve the heart has to work harder to pump blood. As it works harder it gets larger. As it gets larger it needs more blood so it works harder etc..etc...etc... With surgical intervention in time, even a heart that is somewhat enlarged already will sometimes regress back to a more normal size.
Although I did not have leg pain, I did have severe stomach pain that would radiate to my back. I saw my primary care physician and he said it could be caused by the fact that my heart was not working properly supplying oxygen rich blood to my stomach.
Others will be along soon so relax, keep reading and keep asking questions.
Steve

 

[hensylee]

Hi Bethanne (Elizabeth Anne? same as mine, without the last e) - welcome to Vr. My cousin worked at and then retired from Methodist in Houston. She was in the heart area of the hospital and gives nothing but praise for the doctors and care there. Dr DeBakey was there so you know it's a good hospital with learned doctors.

Hang in here and keep us posted on your progress.

 

[2hartsas1]

Bethanne

Bethanne

My husband and I reside in H-town! I gotta tell ya, it's been my experience that Methodist is THE place to be! I was there in '02 for a while and never have received better treatment anywhere!!!
My poor husband is stuck with the Houston V.A. !!! (but he will be just fine anyway )
~Shirley (& Victor)

 

[MarkU]

Hi bethanne,
I also had a bicuspid valve that was first noticed when I was 5. I had my first catherization when I was 15.
I didn't develop any noticable symptoms until I was 47, when I started getting very short of breath after minor exertion. It was very obvious that something was seriously wrong with me. I always knew that I would need a valve replacement, but after 30 years, I guess I had put it in the back of my mind. I probably had been starting to develop symptoms months before, but just did not notice them, or wrote them off to other things.
Unfortunately, I had developed some left ventricular hypertrophy. Because of this, my cardiologist suggested surgery within the next 90 days to help prevent any permanent damage to my heart muscle. I elected to have the surgery immediately, rather than wait around (it also worked out well from a timing standpoint to be able to recover over Christmas break).
Lots of good people on this site to offer help and support...
Mark

 

[ccrawford]

The statin drugs (for cholesterol) can also cause muscle pains, especially in the calves or the gluteous maximous.

 

[Gemma]

Hi Bethanne,
I think the general consensus is that if you know an AVR is in the pipeline, it's better to get it done sooner than later. As others have said above, the surgeons often want to operate sooner whereas cardiologists and doctors are happy to wait a bit longer.
My boyfriend Jim's only symptoms really were chest pains at night after a busy day, tiredness and occasional breathlessness - but the surgeon said if it was 5 years from now he'd be finding it hard even getting up the stairs, and the damage to his heart would be stopped in its tracks by surgery but not reversed, which would consequently mean a reduced quality of life. His heart was very enlarged before his surgery in December but remarkably after 4 weeks got back to normal size. This was something the surgeon said was unlikely to happen at all, but presumably the surgery was done soon enough that no lasting damage was done to his heart. Now he's got the all-clear to do whatever he likes, with no limitations!
As for not trusting your instincts/emotions - you are the only one who knows how you feel. If you think something is amiss keep asking questions and pressing for answers until you know you feel better about the situation.
Hope you get the answers you want - and you'll find everyone here is very kind and willing to help out wherever they can.
Gemma.

 

[ALCapshaw2]

Welcome aboard Bethanne !

Sounds like you've gotten the proper advice.

Bottom Line:

"When in doubt, Check It Out !"

Your primary care physician (PCP) would be a good place to start regarding your leg pains. In addition to the above mentioned possibilities, it might be a good idea to have the PAD (Peripheral Artery Disease Test) which measures Blood Pressure in ALL 4 limbs to characterize your circulation.

If you have not yet selected a surgeon, it might be a good time for a consult to get the Surgical Perspective. The TEE (and Cardiac Catheterization) are the Gold Standards in testing. When the numbers say it is time, IT IS TIME !

Hope you find the cause of those irritating Leg Pains.

'AL'

 

[Raverlaw]

Hi, Bethanne-

I have tingling and numbness in my left arm upon exertion, particularly running or walking fast. My cardiologist told me that pain, tingling or numbness in the extremities is a symptom of aortic stenosis. My Stress Echo and Heart Cath show moderate left ventricular hypertrophy as a result of my living with the stenosis for the past 49 years, but the doctor says the damage will likely reverse itself after I get *fixed* next week.

Don't put it off - get tested today and talk with a heart surgeon, not just your cardiologist, about AVR.

 

[tommy]

Hello Bethanne and welcome to our wonderful site.
My history may help you a bit, but I'll cut to the chase.

Listen to your body and trust your instincts. If your cardio has an opening tomorrow, take it. Don't wait. No sense stewing. Find out now.

My bicuspid valve went unnoticed until it got infected and deformed by a strep germ. Valve replacement came 16 years later - age 47. That was 3 years ago. I am fine now, 20 years younger.

Over time, and several job relocations, each cardiologist said the same thing to me. If nothing is done, the heart can enlarge to a point that cannot be reversed - permanent damage. Valve replacement must take place prior to that happenning.

I never was into exercise (until a few months ago, but that's another story), so I can't comment on the leg pains. Sorry.

I recall that I could feel my heart beating any time of day or night. The pounding would sometimes keep me up at night. I had this constant "full" feeling in my chest.

In the last year before AVR, I gained weight like crazy. it was kind of chicken/egg thing. I didn't exercise, and the heavier I got, the less I felt like exercising. Walking up a flight of stairs was a chore.

I should have paid more attention to that downward cycle. I also should have paid attention to the persistent low-grade fever 16 year prior. So now I preach it from my VR.com soapbox: "Don't wait to get checked out."

It was severe palpitations that landed me in the emergency room, scared stiff. Three weeks later the echo showed the cardio that the time had come. A cardiac cath confirmed it.

I had time to come to terms with the pending surgery, to look for a surgeon, and choose a valve. A month later I was in surgery. I hope that when your time comes, that you have similar opportunity to prepare.

It sounds like you have stayed in pretty good shape with your walking. Staying in shape helps your recuperation after surgery. That's a piece of good news. If the valve can wait, and is not the cause of the leg pain, I hope that you get the pain fixed real soon so you can walk to your heart's desire (pun intended).

 

[bethanne]

Thank y'all very much. I really appreciate the feedback. I made an appointment today for my family doctor for tomorrow. It makes sense to explore these symptoms with her.
Thanks Nancy and the many "echos" LOL....

several of you mentioned the type of symptoms I have been experiencing. It is amazing how this denial thing works. I have truly been dismissing some symptoms. I have my 6-week check up on March 3rd, (with echo on Feb. 26th) after tomorrow's appointment I should have a better sense if I should move-up my scheduled appointments with the cardiologist.

I am particularly intersted in the circulation test Al mentioned...
I really appreciate all the information y'all have shared. Knowledge is definately an empowering thing...

and yes hensalynee my real name is Elizabeth Ann my husband sometimes calls me bethanne with the emphasis on ann so i thought it would be fun to use as my "handle"....

tom - the frustrating thing is that I am not in shape.... I have really made an effort the past to be more active. I drop the water aerobic classes was going to before christmas, it was taking too much energy from me.... my walks with a good friend who listens well and is not afraid to tell me what I need to here whether I like it or not... are becoming more difficult as i shared earlier....

I am really glad i found this site and shared with you guys and gals...

I will keep you posted, thanks again...
beth

 

[bethanne]

update...

update...

I finally went to see my PCF on wednesday. She gave me an antibiotic and a perscription for a dieretic to help with water retention. She wanted me to have a chest x-ray as well.

I decided to put a call into my cardiologist, to run the presription by him and to qualify the chest x-ray. My preference would be to have the x-ray done at methodist if I am going to spend the money for it. I have lost my confidence in the hospital in my local town. I actually did not get around to calling until 4:00, although I did get a call back at home at 5:00 I was out running my daughter to dance class so it will be tomorrow before i talk with the doc.

The last two weeks I have felt like I was coming down with Bronchitis and/or Strep throat... yet I never ran a fever, actually temp was low, although i felt like i was running a fever... this along with a cough, cold hands and swelling I thought I better take these symptoms seriously...

I had mixed feelings about taking the antibiotic since I was not clear what I was taking it for.... but I have to say that I am feeling better...
while i was there i asked for the copy of the record my cardiologist had sent in august as well as my lab work in January...
I was so proud of myself... thanks guys!

Now when I get my results back from my echo scheduled 2.26 i will be more knowledgeable as i have been looking up each bit of information to understand it more. I felt really smart to learn that EF stood for ejection fraction

I have seen other posts with measurements such as valve size that are not on my report... wht is that about?

I am also interested in learning about "Peripheral Artery Disease Test" mentioned by Al earlier...

Any feedback...

p.s. i feel very helpless when I read the posts with others who are farther down the path or up the mountain as y'all say around here. I don't have the experience to offer assistance to those of you facing surgery soon... But you are in my prayers for peace and clear direction.

 

[2hartsas1]

Bethanne

Bethanne

"ya'll"! I love it!!!!
dont hear that too often around the forum circut!!! LOL!!!!
and yes, again, i say, methodist is such a wonderful hospital.
the treatment and care and attention to detail and your personal comfort they provide is, I believe, 2nd to none. i've been in a lot of hospitals, but none like methodist.
ya'll take care,

~Shirley (& Victor)