breathlessness with moderate aortic stenosis????

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J

Jane

Hi. I don't know if this is something I should be worried about or not so I am running it past you all in case you can advise me, prior to contacting the cardiologist.

When I saw him in May and the echo showed that the stenosis was now moderate (bicuspid aortic valve). I didn't think that I had any symptoms beyond a bit of fatigue. However for the last 8 months,(ie prior to seeing eh cardiologist) , I have periodically experienced aching and tightness in my upper chest and between the shoulderblades on exercising (particularly in cold weather, and going uphill and upstairs, plus a shortage of breath. I didn't think that this was a cardiac symptom when I saw the cardiologist, as I have suffered from what has thought to be asthma for 10 years, so thought that the breathing problem and tightness was due to that. Since finding this column after my hospital visit in May (and reading about you all has saved my sanity and given me much strength - many thanks), I have begun to wonder if I should be worried. My GP (family doctor in UK) thinks I am being over anxious and that symptoms wouldn't have got so much worse so soon. But then I have had this "symptom" since February (just didn't think of it as one). I have also had some foot and ankle swelling too but she thinks that is due to the hot weather. She may well have a point, but I would hate to overlook something which should be investigated just because I don't want to be thought neurotic.

To be brief, do you think the tight feeling in the chest and shoulders could be due to the aortic stenosis, or is pain from that always in the lower chest, under the sternum (which mine isn't.) In short I am worried because I don't know if I should be worried.

Any opinions would be most welcome.
 
Hi Jane-

In patients with known heart problems, any of those symptoms should be investigated by your cardiologist. All of them together, certainly should. There is no absolute timetable for symptoms getting worse, some people get worsening symptoms gradually and some get them faster. So I don't know how a doctor could just sort of "skip" over them with your known problems. Make a written list of what you are experiencing on a day to day basis and when, after what activity, and how much the symptoms limit your activities. There is nothing like the written word to get people's attention. Pursue all of this with the cardiologist and don't be put off.

Good luck
 
Hi Jane
As I am pretty new here and I am waiting for my AVR..I am hesitant about giving any advise. I can only relate to you my own experience. I was told in Feb. that my Mild Aortic stenosis had become "Moderate" I had been complaining of shortness of breath and some chest and facial pain for about 8 months. I was told that I was "deconditioned" and needed to go into a excersise program. (any overweight people always are told that LOL) I started a excersise program iiin Nov. and when I told the doctor in Feb..that it was getting worse..he just ignored things and told me to see him in August and he would then do a Echo. By July thing were much worse and in August I saw another Cardiologist who told me my stenosis was severe. I am scheduled for surgery in a few weeks. It is my understanding that many people with severe stenosis may have no symtoms and many people with moderate stenosis may have symtoms. I think that you need to know your own body. Certainly with your known cardiac problems ..your doctor should not ignore your prooooblems and blame tham on "anxiety"
I don't know if I helped or not..but just wanted you to know that doctors are not perfect and you need to take charge if you think that you are experiencing any change of your condition.
Best Luck when you see your doctor
Joan
 
You're not anxious

You're not anxious

Jane,
I had congential aortic stenosis and spent 2 years thinking I had reflux per my primary physican. Please go see the specialist in your condition. I would rather seem anxious and sure than to be misread and in trouble.

Just to let you know my cardilogist did look for swelling in my ankles as a sympton. Better to be safe than sorry.

Good luck.

LeslieD
C Aortic Stenosis
Ross Procedure 7/26
 
Jane

Jane

I am with Leslie. Go see the specialist. I know it's hard being British to not feel as if you are moaning, my husband is from Scotland and will only go to the doc if he is bleeding, but go. I had some of these symptoms...but not so bad that they hindered me. Like Leslie, my doc said to watch out for swelling in hands and ankles, dizziness, blackouts, and chest pains.
Go, at least you'll feel better when they tell you it's nothing.
-Mara
 
Hi Jane
I am also confused about the symptoms of aortic stenosis, I get very breathless when walking even at a moderate pace and also have an ache in my chest, sometimes I get a pain in between my shoulder blades and I feel tired all the time.
My GP has been treating me for asthma since 1997 and I,ve always put the breathlessness down to that but is it , how are we supposed to know,I have been having yearly checkups for about 8 years and all was well until June when I was told I would need AVR and if it was not done I could expect to have a stroke or heart attack in two years.I am now on a NHS waiting list for surgery which should be Dec or Jan I am also waiting for a catheter test which should be in the next 6 weeks I do feel my symptoms have got worse since June I have never been told if I have mild moderate or severe stenosis I have been given very little information from the proffesionals I have had more help and support from this site and have learnt from the members
I intend to ask some questions when I have the catheter test done ,Don,t know if I will get any answers but I can but try
So sorry for complaining but our NhS system is so frustrating sometimes there is very little communication
Thanks for listening
Jan
 
Hi Jane

I also have aortic stenosis. Seen my cardiologist
in April. Not really any symptoms but my echo showed
severe. He told me if I had any symptoms he wanted to
see me. I developed symptom over the summer. Shortness
of breath, some ankle swelling especially on left side and
mild chest pain. Seen my cardiologist today. He is booking
for surgery as soon as he can. In otherwards this month because he will be away in October. Don't hesitate talk to
your dr.
:) Judy
 
Thank you to all who replied. You have been really helpful. I have to see my GP on Monday, so will have a list prepared of all the things that are worrying me but which I have felt too foolish to mention. I will let you know what happens.
 
Hi Jane ,

The one thing you must remember is that is your heart. It's your health. You have to get the answers that you think you need, if not see another cardio fast. Heart disease is nothing to fool around with. I hope you get this worked out. Our prayers and thoughts will be with you.
 
"Asthma"

"Asthma"

Jan,

I think a lot of GPs get fooled by "asthma". My GP kept giving me new meds for asthma when my aortic valve was going. Finally I demanded to see a cardiologist (I had known about my bi-cuspid valve for many years but had no trouble). By the time I saw the cardio, he was almost ready to put me in the hospital...I was in congestive heart failure and the heart was enlarged and thickened in places. Luckily everything is back to normal one and a half years later. My point is that many times if we listen to our bodies, we often know more about what is up that the doctors...don't be cowed by them.

It is your health and future...do be very proactive and don't be embarrassed. Good luck and God bless....keep us posted. We care.
 
Jane

Jane

It can be caused by many things. and going to a cargiologist is the best medicine. They can run tests and figure out what it might be anc the cause. It is better to be safe than sorry. Any chest pain should be investigated. You let us know what happens. Okay? Later
 
FYI - asthma?
My Mom was being treated for asthma, and "allergies" for about three months. Then, new primary care. Listened once to her complains, that Mom really thought were the result of the new meds she was on, chest xray was done......sure enough lung cancer. How exactly does this happen? You've just got to wonder how three other doctors could possibly have missed it.

Trust yourself.
 
Jane,

From my experience, (Mother had AVR 30/5/01 in BRI, Bristol), if you don't keep mentioning your symtoms, and pushing the GP's or clinical doctors nothing will get done. AND you have to be persistant. Don't feel that you're being a nuiscence, it's your life and you've only got one shot at it.
Good luck, and keep in mind that your GP is part of the NHS system and it's not personnal.
 
Jane - mine was a diagnosis of GERD (reflux). At ER they gave me a propulcid for the chest pain, sent me home. Already had a stress test arranged and when I went for it and the cath, the ER trip had been definitely a heart attack. Be vigilant and aggressive when it comes to questions about your heart and if you get the brushoff, get another cardio. I had chest pain and jaw pain, throat pain like indigestion. Then had quad bypass.
 
Update

Update

Just to say I phoned the Cardiologist's secretary this morning and she will send me an appointment within the next few weeks. This morning my GP agreed that I should contact the cardiologist - I would have done anyway!!
 
Many symptoms of aortic stenosis may be confused with ageing, however, a significant decline in activity level over a short period of time should be a concern for referring physicians. Healthy Heart
 

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