I'm new and want to know if anyone has same experience?

[sheridan07]

Hello everyone!

My name is Brian and I am a 35 year old father of three cute little boys. I've had Aortic Stenosis my whole life. I started to get high blood pressure when I was 15 years old. I was very active up until a year or so when I started to experience shortness of breath upon activity,chest pains, a feeling of faint all the time, and my heart races. I went to Cardio Doctor back in October and She tested me on the treadmill with nuclear part too, holter 48 hour, echo. From all that they showed me to have severe AS. My resting heart was high of 144. Four weeks ago I had a heart Cath. and from it showed my AS to be not as severe as what the echo showed. It shows mild to modrate stage. My doctor is really worried about my symptoms and is still recommending to a surgeon and to have a TEE done. My question to all of you that has been through all of this sort of stuff is What should I expect from The TEE? What was your valve condition when you went for surgery? I am at a point that I can't do anything. I want to play with my kids but I'm so tired all the time. Thank you for all your time and sorry this is long.

 

[Phyllis]

Just want to welcome you, Brian. I'm sure many will chime in as the day progresses, but the Tee is the definitive test for diagnosis and will tell the story. As you can read here, many have gone through surgery and gone back to healthy and vigorous life-styles. Best wishes to you.

 

[sheridan07]

Thank you Phyllis! This site seems like a big family. I asked several Doctors about what is going on with me and they all have differrent answers. I am so confused on what may happen. I just want an end to be near. (Surgery or something)

 

[Phyllis]

Brian, once you meet with the surgeon (or two if you feel you need a second opinion), you will have a better idea as to how quickly you need to proceed. Then you can start researching your options as to valve type, etc. In the meantime, you may want to read the threads on valve selection and pre-surgery. We are one big family and I'm glad you found us so that we can help you through this and get you back to playing with your three little boys.

 

[Mary]

Brian,
Yes, I had a similar experience. My echo results showed greater stenosis than did the heart cath. Although I am no fan of TEEs, I think you would do well to have one. It will give you a more definitive answer.
Don't get discouraged; we're here to offer support and personal experience.
Best wishes,
Mary

 

[netmiff]

Brian, I don't want to scare you, but from the sounds of it, you are heading for surgery - and fairly soon, say in the next 6 months or so. I am not a medical professional, but it sounds like your symptoms are bad. I was not symptomatic when I had my surgery (at least I didn't think I was!) and I have felt much better since.

It is a scary thought, I know, I freaked out when my cardio said that someday, maybe later, had become "NOW"! The good thing is that you are getting this taken care of, whatever you, your cardio, your potential srgeon and your family decide.

We are here to help, and those of us who have been through it will hold your hand the whole way, so ask those questions. !

Take care, and hang in there .

 

[sheridan07]

Thanks for all of your support. Mary what happened to you after the echo? What happened to you during the TEE?

 

[sheridan07]

Thanks Netmiff! I am glad you are feeling better. The unknown scares me. I am blessed to have found this site. Thank again.

 

[Ross]

The unknown scares EVERYBODY, first timers and beyond! How many tests have they put you through so far?

 

[Mary]

Thanks for all of your support. Mary what happened to you after the echo? What happened to you during the TEE?

I never had a TEE! I told you I wasn't a big fan of them! Different members have had different experiences with them, but I wasn't willing to chance having the discomfort some do . . . call me chicken!

I had many echos, and I had three heart caths before I finally underwent replacement. The cardios (I had two different ones) were very conservative, even after I suffered two TIA events that landed me in the hospital. I was throwing flecks of calcification from the valve. I finally took matters into my own hands (after reading everything I could on vr.com for a year) contacted a surgeon, and had him review both the echos and heart caths. He wanted to operate the next week, but I wanted to finish up the teaching year and so it was postponed for three weeks. I was very symptomatic by then. The surgery report stated that the aortic valve was malformed due to heavy calcification, and I had moderate heart enlargement.

That's my story. Yours might be different, but I would save myself the time and trouble and go ahead and have the TEE. Just insist upon adequate sedation.

 

[Woodbutcher]

This site is a fantastic sourse of help and knowledge, I was glad to find it too. I had what was termed as very severe stenosis a few weeks ago which was pretty terrifying, however I had next to no symptoms except a bit more tired than usual !? I think everyones different. I'm about 12 days out of surgery now and feeling better but nowhere near as well as before the op!
Good luck with everything though, it sounds like the wheels are in motion to get you on the mend ? Cheers.

 

[ALCapshaw2]

Welcome to our World Sheridan !

It sounds like your Doctors have ordered all the right tests.
(Been There, Done That, several times)

During the TEE, they will insert an Ultrasonic Transducer down your throat and position it right behind your heart where they can get better images than doing an echo through your chest.

Your throat will be sprayed with some Yucky Stuff to suppress the Gag Reflex and you will have an IV. Most likely they will use Versed to control your 'awareness'. Depending on the dose, they can take you anywhere from "that's neat, can I watch" to "I don't want to know or remember ANYTHING about this procedure"

A Surgeon will look at all of your Test Results AND your symptoms before deciding on a course of action. Based on your symptoms, I'm guessing he will say that it is time. The GOOD NEWS is that Valve Replacement Surgery can FIX your problem and restore your life. The Other Good News is that First Time OHS in patients under age 60 is Highly Successful with a 1% risk of mortality and 1% risk of morbidity (less than desirable outcome) vs. almost Certain Demise if you wait and Do Nothing.

And YES, after your TEE, your next trip should be to go consult with a CardioThoracic Surgeon. It's time.

Just Remember, We've ALL Been There and are still here to talk about it!

Let us know if you have any other questions or concerns.
Surely someone can talk to you from their experience with the same issues.

'AL Capshaw'

 

[Ross]

For the T.E.E., you'll be given some nasty tasting stuff to numb the back of your throat. You will be sedated also, but I remember gagging on the transducer during intoduction, then it was lights out. Gagging lasted maybe all of 15 seconds before I was fully sedated.

 

[sheridan07]

Thanks Mary and I made it clear to my Doctor that I want to be out like a light.

Ross I had an EKG,Echo,holter,stress test with nuclear, heart Cath, chest x-ray, Utrasound of my legs because I have numbness in my legs. I am going for a TEE on Jan. 7th

 

[Fran]

Hi Brian!! You're so young! You've got such a great prognosis once they fix you up. I was 44 when I had my valve replaced, I am so active and feeling great now. You will get your life back.

About the TEEs - I'm a gagger, I dreaded the hell out of that test, 'cause I gag on anything most of all the very *thought* of something going down that way in my throat! But everyone kept promising I wouldn't remember and you don't - you wake up almost wondering, When are they are going to start this thing? OH, they're DONE! The spray is great, that numbs your throat, but for my 2nd one, my wonderful Dr Askew wanted to use the goop as he'd had a female patient react to the spray and end up in ICU. So since I used the spray okay the first time, he always lets me spray, then swab with goop. You seriously don't gag that much, even though the goop is disgusting. I've had four of them now, and some stomach scopes as well (my gastro doc just hits your IV with the sleepy stuff, nothing sprayed at all, each doc is different). I'm having a scope tomorrow to check on progress of this ulcer I got from aspirin and the only thing I'm thinking about is what I want to get at Starbuck's after.

The TEE is the best tool for sneaking right in there and getting a really great pic of what's going on. I was having a leaky valve, exhaustion, arrythmias, and I am as good as new or better now with my new valve. The technicalities with my anticoag stuff is still getting ironed out but I'm doing really well.

Don't be afraid. I see you are in NC. I am in VA with the very best surgeon and cardiologist available. If you can't find someone down your way, please contact me and I'll give you all my doctors' info. They're the best and both amazingly kind and compassionate and TOTALLY get us being freaked out and tired of the whole damned thing by the time surgery comes along. You take care, hug on the kids!

 

[sheridan07]

Thanks for all of your advice and I am glad everyone here is on their own road to recovery.

 

[sheridan07]

Thanks Fran and good luck to you tomorrow. I am a " darn yankee" my wife moved me down from CT to North Carolina and I love the South. Good luck

 

[Duff Man]

I've had a couple TEE's. They're no big deal at all. The sleep you can get on the sedative makes it totally worth it. I was really nervous about the first one because I don't like not being in control. The second TEE I was totally awake for and I'd rather be "out" for it...

For what it's worth I've had high blood pressure since I was probably 15 or so, but I wasn't diagnosed and treated for it until 20. Haven't had/needed an AVR yet, but each person is different. I wish you the best of luck.

 

[sheridan07]

Thanks Duff man. What was the reason you had the TEE done? I feel the Doctor wants to have a tie breaker between the echo and the heart cath. Echo showed severe stenosis and the Heart Cath shows it mild-mod stage. I am confused why two tests showed two different results. The doctor who did the Heart Cath told me my shortness of breath was due to my lungs and not my heart defect, and then ask my cardio Doc and she told me that my lung pressures were good and that my shortness of breath is most likely due to my defect. That is why I am confused.

 

[Duff Man]

You're probably right about the TEE being the tie breaker. I've always heard that the heart cath is more accurate for gradients, and the surface echo is kind of notorious for being a little sloppy on the measurements.

It sounds like you're in a bit of limbo until you get the results of the TEE, either way. I would probably insist on just consulting a surgeon unless the results of the TEE are very conclusive - but that's me.

Contrary to popular belief, a typical surgeon isn't usually anxious to perform OHS on a person that doesn't need it. I personally think they're the best person to see when surgery looks like an option. Albeit, this might be even more confusing if the surgeon has a different opinion from the other two doctors.

For my TEE, I have an aortic aneurysm and they thought I might've had a left ventricular outflow obstruction because I was getting tired easy and my heart was pounding. They were also looking for signs of a chronic aortic dissection. Turns out I didn't have as much wrong as they thought and I'm just really out of shape.