Feeling angina?

[DaveEM]

Greetings, I'm new to the forum so forgive me if I'm asking a dumb question. I've searched the forum for information on this and haven't found anything. I was just told a couple of weeks ago my aortic valve (bicuspid) stenosis has reached "severe" stage with a blood flow of 4.13 mps through the valve. My cardiologist said that 50% of people with that number require hvr within a year and that I might feel symptoms anytime. I'm trying to get a sense of how severe the symptom will feel if/when it happens. I'm in pretty good shape, having consistently run at least three days a week for the last 33 years (I'm 52). I've had a number of occasions while running in the last six months or so when I feel very slight tightness in my chest, but no other symptom, e.g., shortness of breath, dizziness, etc. My cardo is noncommittal when I ask him if this is angina, but he has scheduled me for another echo and stress test in early December. Can someone help me get a better sense of what a "symptom" will feel like, especially angina? Will it be unmistakable, or something that could be subtle? Thanks for any help y'all can give me.

Dave

 

[ctyguy]

Greetings, I'm new to the forum so forgive me if I'm asking a dumb question. I've searched the forum for information on this and haven't found anything. I was just told a couple of weeks ago my aortic valve (bicuspid) stenosis has reached "severe" stage with a blood flow of 4.13 mps through the valve. My cardiologist said that 50% of people with that number require hvr within a year and that I might feel symptoms anytime. I'm trying to get a sense of how severe the symptom will feel if/when it happens. I'm in pretty good shape, having consistently run at least three days a week for the last 33 years (I'm 52). I've had a number of occasions while running in the last six months or so when I feel very slight tightness in my chest, but no other symptom, e.g., shortness of breath, dizziness, etc. My cardo is noncommittal when I ask him if this is angina, but he has scheduled me for another echo and stress test in early December. Can someone help me get a better sense of what a "symptom" will feel like, especially angina? Will it be unmistakable, or something that could be subtle? Thanks for any help y'all can give me.

Dave

Dave...

Im 43, was 42 when I had my surgery. I also had a BAV and my stenosis was moderate to severe at the time of my procedure. The gradient across the valve was topping out at 115. The valve measured .9 right before the surgery. Your reference to blood flow Im not sure I understand. What does "mps" stand for ?

What made me go to the cardiologist in the first place was that I was struggling when I ran. I would get tightness in my chest and over the course of a year or two I went from being able to run 3 miles in 30 min or so to not being able to get through a 1/4 mile at 5 mph pace without having symptoms to where i had to stop and walk.

The right answer in my humble opinion is to get the procedure sooner rather than later. I had an episode about 6 months before I even knew I had an issue where my dogs got loose and I went one way down the block, my wife the other. Both of us running and yelling. After a few minutes I simply couldn't catch my breath, I then went down to one knee and then down pretty much face first (fortunately in grass). I was out for maybe 10 seconds. I chalked it up to a panic attack but now I know better. My cardiologist told me that for some the first significant symptom is the last. That gave me serious motivation to get things taken care of. If you follow the same path I followed your going to see the tightness in your chest continue to worsen as the stenosis gets worse. Personally once the doc told me what was going on I stopped exercising completely because he said quite frankly it could kill me. He wouldn't even consider a stress test after seeing my echo. I also got my procedure scheduled ASAP, 15 days from diagnosi to surgery.

Im 7 months post op now and run twice a week (4 miles & 6 miles) with no issues. Im also lifting twice a week and several other cardio exercises as well. All of it without any issues at all. I wear a heart monitor and if I get up over 155 I slow down a bit. Not out of pain because there is none, just as a precaution. Doc told me to train at 145. Prior to my surgery if my heart rate got to 130. I was running again (abeit a slow pace) at 8 weeks post-op. Other than the scar and the daily meds I don't think you would even know I had OHS.

 

[ctyguy]

Dave...

One more thing I forgot to mention. Winter is coming and I would strongly avise you to avoid any snow shoveling prior to surgery. You hear about guys that have heart attacks and drop over dead while shoveling. My cardio told me that I was a candidate for that and to avoid it. Its not like I was out of shape either, I wasn't. I don't remember the specifics to how the cold effects a stenotic BAV but its something that isn't worth risking.

 

[DaveEM]

Mps

Mps

Thank you Susan and Scott! MPS is Meters Per Second and pertains to the velocity of blood flow through the valve, which according to fluid dynamics, is a measure of the size of the opening and it's the measure that my cardio focused on when advising me I had moved into the severe range of stenosis. I don't know what the other numbers are, frankly. Do you think it important I learn the size of the valve? I have noticed that I'm not running as easily as before, but other than the very subtle feeling of tightness sometimes I haven't felt anything else. My cardio told me to keep running at an easy pace until I feel symptoms. Did you (or anyone) ever feel symptoms when at rest? Thanks again for the help!

Dave

 

[briansmom]

The symptoms certainly can start out subtly. My son's symptoms got progressively worse while the doctors told us it wasn't his heart, eventually he had a heart attack and ruined his heart. Now I am a bit biased on the have surgery sooner rather than later. Why would you wait for symptoms? Symptoms mean that you are injuring your body in some way. You are still young and healthy and will handle the surgery well. I would start looking for a surgeon so that you can take your time and make your decisions.

 

[ctyguy]

In looking back I do remember a few times at night where I sat straight up in bed, not really out of breath or any pain, but just not "right". Its hard to explain but after the diagnosis and surgery I thought back about things and this was something that I remembered. Hasn't happened once since the surgery either Beyond that I had times where I felt like I had indigestion. Can't say for certain if that was indeed indigestion or something else. But I can say that if I do get indigestion now I can definitely tie it to a bad food choice. I can take an antacid and that takes care of it, before it didn't. So that also makes me wonder.

 

[Marguerite53]

Hello, Dave, and welcome to our wonderful community. I grew up in Silver Spring, got married 27 years ago in Kensington (Cedar Lane UU Church ). My aortic valve was replaced 2 1/2 years ago here in Oregon where I've lived since 1974. My valve closed down to .53 centimeters squared before I had surgery. That was way too small!! As it has happened for many, the closer you get to needing surgery, the faster the valve closes up. I had my "deciding" echo (a .7 measure) and then suddenly needed several other little unrelated surgical procedures which put me out 4 months for my heart surgery. It closed down fast!

It is quite possible that you should now be making an appointment with a surgeon for a consultation. You have heard a few people warn you (not intending to scare you at all, merely to educate you) that waiting too long can be fatal! There really is no reason to wait as you have moved into the severe category. Cardiologists, for some unnerving reason, tend to take a very conservative approach to things. They wait and wait and wait. I swear, I was so ready for surgery (having waited 3 years from the initial schock of being told about the stenosis) that I think I willed my valve shut! Please consider talking with a surgeon. You might also ask your cardio when he/she will finally send you to one....what measure or symptom or whatever is going to cause your cardio to call in the surgeon.

As far as angina goes, some of us feel it in our jaw. Mostly, many of us just feel that weakness and breathlessness and general tiredness as symptoms of the stenosis. You will drive yourself crazy wondering what this or that feeling is. Trust me. We all have!!!! In the end, it isn't really that important to put a label on the feelings. The fact that you are feeling anything out of the ordinary at all is indicative of the fact that you are actually a lot sicker than you think and should respect that and educate youself.

Choosing a valve for the replacement is very important also. Please begin your research on that very personal and improtant choice.

Gotta run. SNL calls here on the Pacific coast!

Best wishes

Marguerite

 

[skeptic49]

I get chest tightness up into my neck on heavy exertion, which I try not to do too often, and even when I'm stressed, like when giving a talk in front of a lot of people. I consider this to be angina related to my AV disease.

I've set up a consulatation with a surgeon for November even though I'm not considered severe just yet. Why not? Why wait until you keel over to at least get an opinion from a surgeon and start the surgeon selection process?

My last cardio's report states that I have been "cautioned" to seek attention if I develop any of the severe category Av disease symptoms. Excuse me, but that's like saying get that flat tire fixed after you've driven on it for a few miles and damaged it. Time to get proactive and out a little ahead of the situation, it seems to me.

Jim

 

[DaveEM]

Symptoms

Symptoms

Thank you all for your help! I'm a little surprised, but comforted, to hear that some of you felt strange things even when at rest, since my cardio has always stressed the exertion piece. I feel like I have been feeling quite a number of strange subtle things, like momentary numbness in my fingers or foot, or fleeting twinges that feel like little muscle aches but not painful, in my left arm. Although I mentioned I'm scheduled for an echo and stress test in early December, I think I'll take your counsel and get an appointment this week to discuss a time table. It does seem silly to wait for the first obvious symptom, especially since it could be my last! How many of you good folks got a second opinion regarding the diagnosis, and did the second opinion actually change your course of action? Also, would there be a problem getting the surgery done over the Christmas/New Year holiday because that way my family would be home during that period and not have to work or go to school? I'm thinking that hospitals are not good places to be over holidays, however. It's great hearing from you and I do feel part of a new community that really comforts me!

 

[abbanabba]

Thank you all for your help! I'm a little surprised, but comforted, to hear that some of you felt strange things even when at rest, since my cardio has always stressed the exertion piece.

Funny thing for me is when they've had me doing something like an exercise test, my heart seems to fall into a much better rhythym... it's the rest of the time it's doing funky stuff, so surely it makes sense that I'd feel symptoms at rest.

Like you, I've been getting all manner of "weird" sensations, from chest tightness or sharp/stabbing sensations, to aches in my left armpit, shoulder pain and even my left hip getting "pins & needles" each night (regardless of whether I'm actually lying on that side or not). The hard bit is trying to figure out what might be "important"

Meanwhile I got several second opinions when they started to tell me I was giving myself psychosomatic symptoms because I was "anxious" about my heart (after they were the ones who told me I needed a PVR ASAP!!!!! ). Still - they're finally doing it, so hopefully it will resolve a lot of these mystery niggles.

Anyway, I hope your December tests give you and your cardio a clearer picture of what is going on... and certainly look elsewhere if you feel you aren't getting the care you should.


A : )

 

[epstns]

Dave, Welcome to The Waiting Room -- the virtual room where many of us await our own turns at valve surgery.

My situation is similar to yours -- almost 61 years old, moderate to severe aortic stenosis, probable bicuspid valve, etc. I, too, have been warned about the "cardinal" symptoms, but when I ask my cardio how I will recognize things like angina and shortness of breath, he simply says, "Trust me, you will know before we do."

That said, I still jog 5 days a week, doing 4 miles a day. Over the past few years my pace has slowed from 9:30/mile to now about 11:00/mile, but I am still comfortable doing it. My cardio says that although my echo measures indicate that I "could" be a surgical candidate, they cannot yet recommend it as it is not significantly affecting my quality of life, and no signs of heart damage are evident. We do echo's every 6 months, to keep track, but other than medication for high blood pressure and a restriction on heavy lifting, I am told to live my life until it it time. . .

 

[Marguerite53]

Thank you all for your help! I'm a little surprised, but comforted, to hear that some of you felt strange things even when at rest, since my cardio has always stressed the exertion piece. I feel like I have been feeling quite a number of strange subtle things, like momentary numbness in my fingers or foot, or fleeting twinges that feel like little muscle aches but not painful, in my left arm. Although I mentioned I'm scheduled for an echo and stress test in early December, I think I'll take your counsel and get an appointment this week to discuss a time table. It does seem silly to wait for the first obvious symptom, especially since it could be my last! How many of you good folks got a second opinion regarding the diagnosis, and did the second opinion actually change your course of action? Also, would there be a problem getting the surgery done over the Christmas/New Year holiday because that way my family would be home during that period and not have to work or go to school? I'm thinking that hospitals are not good places to be over holidays, however. It's great hearing from you and I do feel part of a new community that really comforts me!

Dave, we probably did not mean that you should rush into surgery. Rather, we were hoping you would more deeply educate yourself. Consulting with a surgeon is very educational!!! There is a lot to know....more than many of us can put our arms around. Since you have time, it would be great to get better informed.

I don't think any of us in this situation would choose the holidays to have the surgery. You will need some help when you are home, but honestly, just for the first week, if all goes well. Don't wreck your holiday if you don't have to. Recovery is a long time period.

As far as second opinions go, I did switch cardiologists right away. I trusted the cardio who gave me the news (and by the way, I'd known of my bicuspid valve for 20+ years so it wasn't a complete surprise), but he was not attached to the hospital I wanted to use and he did not have the reputation I was seeking to see me through all of this. So I got a "second opinion" from a cardio, but knew all along that they would find the same thing. Funny, the first cardio probably would have got me into surgery sooner! Anyway, I really wanted this woman, my age, taking care of me. She has proven to be quite wonderful.

If I were you, I would definitely get a second cardiological opinion, just becasue you can.....your insurance should cover it. Think about hospitals in your area and if you have anyone who can refer you to a "better" (I mean, you might already have the best) cardio, try them out.

Keep posting here. Glad you feel comfy with us. Be sure to start a new thread with every distinctly different kind of question....that way more people will see it and be able to respond. Great that you found us.

Marguerite

 

[Dawn-Marie]

Hi Dave ~ Welcome to the VR Site! I have critical aortic stenosis. I am very inactive as i'm paralyzed from the upper chest down and use an electric wheelchair. I still have symptoms. I sleep all night, but by Noon i'm starting to fall asleep at the computer and i sleep on and off all day, but then am so tired i go right to sleep when i go to bed. Plus i have dizziness on and off and i have pain in my chest and around my left shoulder and down my left arm and into my wrist and hand. One day it kept up for almost 4 hours. I always had a heart murmur, but they told me as a kid that it was "innocent". They found out i had aortic stenosis in 1997, but my doctor said it was mild and would never bother me, and never checked it again. Then i had Congestive Heart Failure last November and they found i had a Bicuspid Aortic Valve. They were going to operate, but decided not to because i don't have good pulmonary function due to my paralysis, so i have to wait and see if they open up the FDA study next year and allow them to do percutaneous aortic valves on people with Bicuspid Valves (which they don't presently allow). Anyway, i just wanted to say you can have symptoms when you don't exert yourself at all, but then mine is at the critical stage.

Like the others said, start checking out surgeons and find one who has done a lot of valve replacements, and that you feel comfortable with, and decide which type of valve you want. That way, when the time comes that you need the surgery, you'll be ready.

Best wishes,

Dawn-Marie

 

[THigginsVT]

Dave

Your health story is similar to my own. No symtoms and generally good health.

This summer I started to slow down. Still no symtoms. But ...the numbers were therre. Again similar to yours.

I had surgery last Friday and felt so good about 12 hors later. My advice: get it done. I returned home yesterday. Do not wait for symptons, schedule a surgical consultation and set a date! Tom

 

[DaveEM]

Inspiring

Inspiring

Hi Dave ~ Welcome to the VR Site! I have critical aortic stenosis. I am very inactive as i'm paralyzed from the upper chest down and use an electric wheelchair. I still have symptoms. I sleep all night, but by Noon i'm starting to fall asleep at the computer and i sleep on and off all day, but then am so tired i go right to sleep when i go to bed. Plus i have dizziness on and off and i have pain in my chest and around my left shoulder and down my left arm and into my wrist and hand. One day it kept up for almost 4 hours. I always had a heart murmur, but they told me as a kid that it was "innocent". They found out i had aortic stenosis in 1997, but my doctor said it was mild and would never bother me, and never checked it again. Then i had Congestive Heart Failure last November and they found i had a Bicuspid Aortic Valve. They were going to operate, but decided not to because i don't have good pulmonary function due to my paralysis, so i have to wait and see if they open up the FDA study next year and allow them to do percutaneous aortic valves on people with Bicuspid Valves (which they don't presently allow). Anyway, i just wanted to say you can have symptoms when you don't exert yourself at all, but then mine is at the critical stage.

Like the others said, start checking out surgeons and find one who has done a lot of valve replacements, and that you feel comfortable with, and decide which type of valve you want. That way, when the time comes that you need the surgery, you'll be ready.

Best wishes,

Dawn-Marie

Hi Dawn-Marie, thank you for your kind thoughts even as you suffer as well. Thank you for sharing with me your circumstances, and you've helped me. Very best wishes to you, as well,

Dave

 

[Jkm7]

Dave..... Happy you found us but sorry for the reason.

About your question re: having surgery over the holidays. I had my first OHS (going on five years ago) days before Christmas. Mine was an emergency so no choice but the floor was just about full so most assuredly others scheduled their surgeries for that week for any number of reasons including family schedules.

I agree with the others that it might be a good idea for you to start your research re: which hospital and surgeon and valve.

These are big decisions and for some, the answers come quickly. (They did for me for my second OHS. I knew I would return to the same hospital (Mass General) and same surgeon, assuming he would agree to a re-op on me which he did. Choosing my valve also became easier for me than I expected. I knew I wanted a tissue vs mechanical early in my research. I nevertheless continued reading everything I found helpful up until the final decision was made with my surgeon.

Good luck.
You will get loads of support and information and understanding here. Only those of us who have been through it fully understand.

 

[Cameron]

Feeling Angina

Feeling Angina

Dave,
I just signed on to the forum - looks like a great place to share experiences.
A couple of months ago I was diagnosed with acute aortic stenosis due to a calcified bicuspid aortic valve. The reason I went to the Doctor in the first place was that I had experienced tightness in my chest and tingling down both arms during a brisk walk. I am 55 and, on reflection I had experienced some symptoms at least 10 years ago. I did a lot of long haul flights and almost every time I came off a flight and was walking through the terminal I would feel some tightness and tingling - I always just thought it was the result of sitting in a pressurised tube for 10-13 hours!!. I had an echocardiogram and an angiogram and my valve is down to 0.6mm and I am now waiting for an appointment with the surgeon to schedule a date and make the decision on valve type. All the other bits of my heart are working perfectly so I am expecting a pretty routine surgery.
What I experienced was more like feeling indigestion - a discomfort similar to when a piece of food goes down the wrong way and feels stuck. Tingling in BOTH arms similar to when you wake up having pinched off the blood flow. I also had one experience when I woke up feeling that I was having trouble breathing and was easily made out of breath all the rest of that day - I am borderline asthmatic so again I first attributed the problem to that rather than the heart thing.
I have never experienced what I would call pain - just discomfort and tightness and occaisionally this occurs while simply couch potatoing - of which I do a lot! I also have stopped any exercise regiment until I have the surgery.
Cameron

 

[JaneBerm]

Your symptoms sound like mine

Your symptoms sound like mine

It sounds like we are on the same path. I've been trying to determine if what I was feeling were really symptoms, or just my imagination going crazy! I've been given two different opinions and now must decide what to do. My first cardio doc has me on track for surgery in January, but the second opinion suggests waiting until I exhibit "real" symptoms. Generally, I feel fine, but I do have that slight tightness/soreness that seems to comes and goes in waves--never very bad. Lately I've also had the tinglling in my hands at night, but I've had problems with carpel tunnel for quite a while and just thought that was the problem. Your email has gotten me thinking that maybe I should be thinking sooner rather than later.

Good luck to you and keep posting. It should help both you and others!

Jane

Dave,
I just signed on to the forum - looks like a great place to share experiences.
A couple of months ago I was diagnosed with acute aortic stenosis due to a calcified bicuspid aortic valve. The reason I went to the Doctor in the first place was that I had experienced tightness in my chest and tingling down both arms during a brisk walk. I am 55 and, on reflection I had experienced some symptoms at least 10 years ago. I did a lot of long haul flights and almost every time I came off a flight and was walking through the terminal I would feel some tightness and tingling - I always just thought it was the result of sitting in a pressurised tube for 10-13 hours!!. I had an echocardiogram and an angiogram and my valve is down to 0.6mm and I am now waiting for an appointment with the surgeon to schedule a date and make the decision on valve type. All the other bits of my heart are working perfectly so I am expecting a pretty routine surgery.
What I experienced was more like feeling indigestion - a discomfort similar to when a piece of food goes down the wrong way and feels stuck. Tingling in BOTH arms similar to when you wake up having pinched off the blood flow. I also had one experience when I woke up feeling that I was having trouble breathing and was easily made out of breath all the rest of that day - I am borderline asthmatic so again I first attributed the problem to that rather than the heart thing.
I have never experienced what I would call pain - just discomfort and tightness and occaisionally this occurs while simply couch potatoing - of which I do a lot! I also have stopped any exercise regiment until I have the surgery.
Cameron

 

[Phyllis]

Dave,
I just signed on to the forum - looks like a great place to share experiences.
A couple of months ago I was diagnosed with acute aortic stenosis due to a calcified bicuspid aortic valve. The reason I went to the Doctor in the first place was that I had experienced tightness in my chest and tingling down both arms during a brisk walk. I am 55 and, on reflection I had experienced some symptoms at least 10 years ago. I did a lot of long haul flights and almost every time I came off a flight and was walking through the terminal I would feel some tightness and tingling - I always just thought it was the result of sitting in a pressurised tube for 10-13 hours!!. I had an echocardiogram and an angiogram and my valve is down to 0.6mm and I am now waiting for an appointment with the surgeon to schedule a date and make the decision on valve type. All the other bits of my heart are working perfectly so I am expecting a pretty routine surgery.
What I experienced was more like feeling indigestion - a discomfort similar to when a piece of food goes down the wrong way and feels stuck. Tingling in BOTH arms similar to when you wake up having pinched off the blood flow. I also had one experience when I woke up feeling that I was having trouble breathing and was easily made out of breath all the rest of that day - I am borderline asthmatic so again I first attributed the problem to that rather than the heart thing.
I have never experienced what I would call pain - just discomfort and tightness and occaisionally this occurs while simply couch potatoing - of which I do a lot! I also have stopped any exercise regiment until I have the surgery.
Cameron

Welcome Cameron. You might want to start your own thread in pre-surgery to introduce yourself. Please let us know when you have a surgery date and ask away for any questions you may have.