Mayo Clinic Connect
Anyone have this non operable problem according to doctors and tests.its called aortic stenosis
Liked by Teresa, Volunteer Mentor, onthego3, Leonard
@tjmcdon I understand but look at the alternative Best wishes
Liked by Leonard, tjmcdon
Welcome to our caring group… Some of us are not as PC as others… I had EXACTLY same as your issue and had open heart surgery to replace mine 9/10/2018. EXACTLY!!
I joined, like you, a short period before my surgery…
I wrestled thru hi school – if you know about 6 minute wrestling you know there is nothing more strenuous to heart than that. I got a scholarship to college as wrestler after 29:1 season as sr in hi school. NO SYMPTOMS. Call it a genetic 'defect' if you must, but I disagree. YOU and I both know we survived all these years without a 'defect' getting in our way. YA, a two-fer instead of a three-yer lets less blood thru each pump, but it didn't bother us our whole lives! I do not call it a 'defect.' 'snuff said on that.
Fast forward to 2018, your story is IDENTICAL to mine. IDENTICAL @tjcmdon! Then in 2018 FAMILY DOC says OMG!!!! the burber I heard first 2 yrs ago and made you take an echo is WORSE! YOU WILL DIE IF YOU DON'T DO WHAT I SAY. Sure, latest echo showed significant less flow, etc, then 2017. Cardiologist told me I had equivalent to a drink straw worth of blood going through each pump!
OK, OK,… well in my case – after 10 years as black belt in karate and competitions (what was that about being a defect??) – AND NO ADVERSE ISSUES, I developed hip pain. Slowed me down! to point I walked less and less, did things SLOW. I HAD NO FREAKIN CLUE my heart was slowing down too due to this bicuspid thing and hardening up (stenosis)… I had no clue of the heart issue 'cuz I slowed down due to my stupid hip! But 1 week before surgery I had to go to ER for racing heart, skipping beats, sweating like a pig (probably 2 cups in 30 minutes)… OK, perhaps I DO need this heart valve replaced after all…
Did it, hip still hurt, so I felt NO BETTER AFTER SURGERY. Dah… began physical therapy for the dam hip, getting better, and guess what? No shortness of breath, energy not an issue. so guess the heart valve replacement made that (apparent to me) none issue go away.
DO IT. JUST FREAKIN DO IT!!
You have no alternative…
You are younger than my 66 yrs so you get the mechanical valve instead of pigskin (think football) version I got. So you get to take blood thinners but you have no choice.
You can do it or not. Not and watch your life terminate or begin downhill as your heart begins not being able to pump enough. Perhaps if you can make your hip hurt so bad you slow down naturally you can put it off as I did another 5 years? Sound like a plan?
YOU ARE NOT ALONE. MANY OF US HAVE BEEN THERE, DONE THAT. Mechanical valve said to last the rest of your life. finished, done.
GO FOR IT.
BTW, I see medical technology improving, & 10-15yrs from now them coming back to you and replacement that mechanical gadget with something else, thereby stopping your blood thinners and improving you once more…
PS: Only advice I can give you – other than DO IT before too late – is research your Dr/hospital… do not kick yourself afterwards for not allowing one of the best to do it… If something bad happens that would not have if you have picked a top notch Dr & hospital! I THOUGHT our local hospital with its fancy heart addition was in top 10… found a few days before surgery they were down at like 75th in ranking for this in my state… I began second guessing my decision: if not for having a wife who believed in this particular hospital I would have called it off and scheduled to #1… I got lucky and got a great surgeon who excelled at aortic valve replacement! Instead I gave my 35yr experience surgeon the privilege of being able to say he finally got to use the largest aortic valve replacement in the kit (29cm)! And letting him brag he used more wire on putting my chest back together than any in his whole career. (Ya, I AM a big guy 😉 )
DO IT! STOP QUESTIONING IT!
Liked by thankful, lioness, Leonard, tjmcdon
My original post got cut off some how. Here it is….
I have congential heart defect( bicuspid aotic valve stenosis) evidently I was born with this
( bicuspid aortic valve) and never knew, also have a heart murmer. I never had any problems as a child. I swam competitively until my late teens. Fast forward to today, I'm a male 52 years old in fairly good health, some cholesterol
issues, but under control with a statin drug. In 2016/2017 I was diagnosed with bicuspid aortic valve stenosis, after experiencing loss of energy, fatigue, chest tightness, some light headedness/ dizziness and shortness of breath, sometimes just doing minimally everyday tasks.
I've had two echos, heart cath, two treadmill stress tests.
Since the first tests, until the most recent tests in January 2019, my stenosis is showing more narrowing. My cardio has suggested I need to have valve replacement surgery( mechanical valve) in the next 3-6 months and has recommended a surgeon along with more testing. Im overwhelmed at the thought of facing open heart surgery… what is my life expectancy without having the surgery? 3-5 years? I have alot to digest right now. What question should I be asking? Very overwhelmed.
Jump to this post
I can understand your concerns regarding heart surgery. Like @lioness said it has become more of a routine procedure now. I have been faced with this same situation and I would like to share with you some of the questions or procedures that I have followed:
1. Always get a second opinion before considering surgery.
2. Question your doctors as to how many of these procedures they have personally done.
3. Do a little research and find out which medical facility and doctors have the best experience with these types of surgery, (i.e., is their a heart center at a university medical school where you could go for your second opinion?).
4. Why is the doctor suggesting a mechanical valve rather than a pig valve (mechanical valves depend on the use of blood thinners after surgery while pig valves often do not).
I wish you well as you make an informed choice both to the surgery and where and who performs the surgery.
Will you post again and let me know how you are doing with the decision process?
Liked by lioness, Leonard, tjmcdon
My husband learned in late 2016 he had an enlarged heart valve. He was prescribed statin. In 2017 he had echo that showed bicuspid aortic valve, aortic stenosis and aortic aneurysm. He was told they would monitor each year for size and explained symptoms to let them know. In 2018 had echo the tech asked if he was light headed or dizzy as his heart rate was 40. He said no. The NP said watch and wait. After that I noticed he was fatigued, sometimes he would get lightheaded when standing, sat to rest when out, etc. He always told me he was good. In February 2019 we took him to ER as diabetes was high, fatigue, fell into chairs, etc. The doc found he had a silent stroke at some time. Neurologist did so much work up for her purposes and other doctors. Had event monitoring for 30 days. Had to call for finding after 1 1/2 months. Received message from cardiologist office RN that said fine. In may we called 911 cuz he fell and then passed out cold with eyes open. The ER said all was okay and PC and hospitalist didn't think he needed to be admitted. BUT, they kept him for three days to monitor. Found out after he was in telemetry. Went for follow up this week he is now hypotension and bradycardia. Has another event monitoring now for 30 days and was told he would have echo-tavr test. Not sure what is happening. Any thoughts?
Liked by Leonard
Hello @elina1, welcome to Connect. You may notice I combined your discussion with another discussion titled, "Aortic stenosis & valve replacement." I did this so the other members on Connect already discussing aortic issues would see your message and have a chance to share their thoughts with your post, and so you could read through some of the messages already posted as well. If you are replying by email, you can click on VIEW & REPLY to see where your message is now located and so you can read through previous messages.
@elina1, while we wait for other members to join, would you mind sharing what the current event monitoring is looking for? Has your current provider shared with you what they may be looking for?
He passed out cold, blood pressure very low dehydration. He had a silent stroke found out in February. I guess they are trying to figure if it was heart related. The low blood pressure wasn't a concern until April. We're trying to figure this out too.
Liked by Teresa, Volunteer Mentor, Leonard
It has been a while since you last posted. Did you make a decision regarding the valve replacement surgery? I hope you are doing well.
The NP also checked with cardiologist and he said he can do other measurements. He also has bicuspid aortic valve. She mentioned sometimes there is a hole that some are born with. I guess that is why they are scheduling an echo-tavr. I don't know what that is and why. My husband has no concerns . He doesn't seem to recall things that are discussed. I am just going with info we are given and trying to understand it.
Tavr is a less evasive procedure , repairing the valve by going through the groin. I did not qualify for that procedure and had open heat surgery and had the valve replaced with the cow part. The Tavr will provide for a speedier recovery. Hoping the best for your Hubby.
Hello Elina1 and Betty,
TAVR is not used for Bicuspid Valve replacement. It is designed to replace a standard Tricuspid Valve only. I went thru the Aortic Valve replacement surgery on early 2018, and they would not do a TAVR on the Bicuspid Valve. My requesting a TAVR wan't going to happen. A tissue valve is probably what they will want to use. You should discuss the Replacement Valve options very carefully with the surgeon. For folks older than 70 they usually do a Tissue Valve. I was 52 so they opted for a Man Made Valve. If a Man Made Valve is what they will use, ask for the On-X Aortic valve. Has the lowest blood thinner approval by the US Government. Less meds.
For me Valve Replacement Surgery was a breeze compared to the 2 prior Bi-pass and Aneurysm Surgeries. Those were many weeks in the hospital. Cut openen from the side. Don't join that club. I understand there is an age difference, but his body will tolerate it very well. His recovery will just be longer than someone younger. Tell him to keep his chin up! An you keep his spirits up and yours too!! Keep us all informed on the outcome.
All the best!
In all honesty, I thought the bicuspid was separate from aortic stenosis. I don't know what will happen. I find I have to drag information from the cardiology and primary care. They say watch and good, then have to re-explain what has happened and is happening. Thanks for the information.
Aortic Stenosis is a stiffening of the valve. Typically something that will happen to all Bicuspid Valves as the tissue gets all fatigued and wore out from having to function in a position of the Heart that really needs a Tricuspid Valve. I had the Stenosis as well and my Aortic Valve was Bicuspid. Two probably go hand in hand. Some folks make it their whole life just fine with a Bicuspid Valve, and some folks like me had theirs failing miserably at 52. You doing the right stuff just being here and speaking with folks who for the most part had these procedures performed on them.
Liked by Teresa, Volunteer Mentor, elina1
Thank you for your tenderness in your comments. My husband turned 65 last October and there has been much happening since then. I remember when we first met with the cardiologist in 2017, he had said when the timing was right it would be open heart surgery. I am afraid he will not be healthy enough. He has dropped to 125 lbs. While he is a small man now, he was very fit, muscular, and worked hard, heavy work till that time. I know everything will go according to plan. We don't know that plan yet. I am sorry you have been through all this and more.I am grateful for taking the time to be there helping to understand. Elina, Colorado
Liked by Teresa, Volunteer Mentor
Thank you! We will keep trying to figure this out with help from his cardiologist, you and Bruce's
I hope for a friend to come into our life. You are very sweet.
Hi, thank you for connecting me with the correct group. Had a good comment from Bruce. My husband is okay now but had a slight scare this morning. Since he has the monitor on, the monitor nurse is watching symptoms we reported. I think right now we don't need connections. He is good. Thank you again.
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