Another newbie checking in and TEE ??

[Jeanie]

I am glad I found this forum, and thanks to those who work so hard to provide it! I have a question I have not yet found the answer to, but I did try to find it first. Before that though, here is the backgrounder on me.

I've had a murmur all my life and until 4 years ago it was classified as 'functional' and 'not to worry'. I just turned 58 so of course the diagnostics available when I was much younger were quite less exact than what is available now. Four years ago, when I had my appendix out on an emergency basis, I also had an echo that showed I had some aortic stenosis at that time, and it was recommended I have a followup TEE, which I did not get around to. Then 'life happened' and I kind of back-burnered the heart thing until recently. Luckily that Doctor did give me a list of symptoms to watch for that would indicate the valve is getting worse, so at least I figured out that which was foretold had arrived.

Anyway, I never did get around to having the TEE but am likely to have one soon because the valve apparently is getting much, much worse, and when I called to get an appointment for a new echo etc, the soonest appointment I could get was a month later, which will be coming up Jan 12. I am mentally ready to have an AVR of some kind, but am really worried about the TEE. In 2005 the Cardio Doc who recommended the TEE mentioned that it can be a problematical test for anyone with swallowing difficulty. I do have such a problem, so am wondering two things, one is, are they even going to be able to do a TEE either for echo followup and/or during surgery, and just how bad and difficult will the TEE itself be? I would really appreciate knowing both good and bad experiences people have had, and coping strategies various of you may have come up with. Thanks in advance!
Jeanie in Omaha

 

[Duffey]

Hi, Jeanie, and welcome.
The good news is not everyone has a TEE before surgery. I would venture a guess that perhaps as few as 25% of VR members, maybe even less, had one pre-replacement.
My cardiologist wanted me to have one, but I refused. It didn't change the course or timing of my replacement at all.
You will have a TEE after surgery, but it is done while you're in the OR, still completely out. They do it to check the valve function before finishing up the surgery.
I hope this helps relieve some of your anxiety.

 

[Jeanie]

Thanks Duffey, that does help. Knowing that it may not be necessary or may not be 'end of the world if I do not' have a TEE pre-op, if the cardiologist (a new one, not the one from 4 years ago) does not recommend surgery ASAP without it, I also plan to take some advice I found elsewhere on the forum, to contact a surgeon on my own. I can tell from the rapid onset and daily worsening of my symptoms that I want surgery ASAP not 'whenever'.
Jeanie
Edited to add, I still would like to know more about the test and people's experiences with it though.

 

[ottagal]

Hi Jeanie,
Welcome to this wonderful forum. You are amongst VR friends here and will get great support. Sorry for the circumstances.

I can tell you that I only had a TEE done right while under general in the OR before the valve replacement surgery started to confirm the severity of my condition. He was also trying to determine whether the pulmonary valve needed to be repaired at that time. I was told that this is standard procedure him. Needless to say, I was not 'awake' for this and it had no impact on me except a confirmation to give my surgeon the go ahead to do the surgery.
Prior to this, everything was confirmed with an echocardiogram.

All the very best to you,

 

[Bina]

Hello and welcome!
When my regular echo finally showed some serious valve area reduction, my surgeon
booked me for surgery and had me undergo a heart cath 2 weeks before.
No TEE for me.

 

[Kathy McCain]

Hi Jeannie,

I did not have a tee before my AVR. My aortic stenosis diagnosis was revealed through an Echo. It is my understanding that is the "Gold Standard".

It is very likely, you may not have to have a tee done.

Good luck and keep us informed

 

[ShezaGirlie]

Hi Jeanie and welcome. Like most others, I never had a TEE either. An ECHO confirmed my aortic stenosis in the ER and then a couple of days later I had a cardiac cath which showed my arteries "clear as a bell" which is rather common amongst folks with bi-cuspid aortic valves. I had surgery a couple of days later; never left the hospital.

You've pushed the age limit a little since my cardio told me that most BAV's require surgery around the age of 55...that was me..! That was 10 years ago -- my how time flies when you're having fun..

Which valves are you favoring? There's lots of info on here about the choices and Al Capshaw 'specializes' in getting the info out there, so do a search of him and see what he has to say.

Again, welcome..!!

 

[psalmist]

Tee

Tee

I had a TEE to determine the severity of the regurgitation. I had a tricky dx as it was an eratic back flow into my heart. My experience wasn't bad at all. I was given some kinda drug that didn't put me all the way out but pretty close. I woke up a couple of times through the test (the cardio said I would) but I don't remember much. I didn't panic. Just fell right back to sleep. I do remember hearing the cardio stating that my valve was indeed bad and needed replacement. I remember telling my wife and saying hey... it's not big deal. It will be ok....... thats how lit I was.... It was not a bad experience for me. but everyone is different..

 

[Jeanie]

Thanks so much for the quick replies, really appreciate it. I don't remember if the 2005 echo showed regurgigation but I can tell there is significant backflow now. I have really low BP (in those self-test thingies in stores), can see pulsing in jugular vein, and have significant shortness of breath, and other 'fun' symptoms of a valve gone bad tipping me into CHF. My Mom had CHF so I knew a little bit about that disorder, but was unpleasantly surprised by getting into that so quickly a few months after developing significant shortness of breath. I am really looking forward to getting a definitive diagnosis and getting fixed up.

As to type of valve, am still trying to figure that out. I at first was really enthused about the Ross Procedure, and figured a bovine tissue valve might be a good plan B, but have just been reading about the On-X and that seems kind of neat. I don't really know enough at this point to have a clue, plan to just pray and trust the surgeon's judgment. (Since I'd be placing my life literally into the surgeon's hands, that seems logical in a way, since whatever the surgeon is most familiar with is the one most likely to be installed correctly?)
Jeanie

 

[Bina]

The choice of valve is really up to you AND your surgeon.
My surgeon was quite happy to install a mech or tissue, he had lots of exp with both.

 

[Freddie]

Just want to pop in and say "Hi" to you Jeanie.

You have found a great site and I'm sure you'll get your answers.

Greetings to you and Welcome.

 

[njean]

Just wanted to welcome you to the forum Jeanie. I'm glad you found us because it will ease your mind to hear from so many of us that have been where you are right now & are now going on with their lives.

I have had two TEE's done & I did not experience any significant problem with them. But as was mentioned before, everyone is different & may have a different opinion on their experience.

As far as the valve is concerned, if you are troubled that if you choose a mechanical valve, you will have to be on anticoagulants for the rest of your life, then fret no more. Many of us are on anticoagulants & have been for years without any significant issues. I have been on coumadin since I was 24 years old & have led an active & as normal or near normal life as possible.

So good luck to you & remember that whatever valve you decide to go with will be a good choice so long as you are comfortable with your decision.l

 

[Jkm7]

Hi Jeanie,
Happy you found us but sorry for the reason.

Just want to say I had a TEE and it was a snap for me. Really. I didn't know what to expect but came to learn the expertise of the cardio doing the TEE makes a huge difference. If your cardio really wants you to have one, ask for the most experienced Interventionalist. You don't want someone 'new' doing it.

They gave me plenty of 'relaxation' meds and I felt no discomfort either during or after it. I was absolutely fine from start to finish. It gives the surgeon excellent information.

They also do TEE's during our OHS so surgeon can check before (s)he closes.

It really is a much easier test than it sounds like it would be.

 

[Faye]

Hi Jeanie and WELCOME to our zoo.

I have had a couple of TEEs. One during surgery which I have no recollection of (thanks goodness) and two others.

If you end up having one either before or after surgery you will first be given something to "gargle" and then swallow. The stuff numbs your throat. My doc warned me about the taste but he didn't warn me about the texture. The taste was medicinal and the stuff was thick. I was given 2 doses to gargle and then swallow. I was also given a small dose of versed in an IV.
Versed is a wonderful medicine that allows you to be responsive to the doctors but also keeps you relaxed and makes it so you don't remember much of what went on.

I was curious about the test so I didn't have too big of a dose of the wonder drug. Once my throat was numb,my cardiologist put a tube in my throat and told me to cough - in the tube went. No discomfort at all. I remember the whole test. I was never in pain and really had no discomfort. When my doc was finished, he told me to cough and out the tube came!

The worst part was the numbness afterwards - very similar to when you are numbed by a dentist. My throat was a tiny bit sore the next day but that was it.

Don't stress over the test - it is quick and easy for most people.

 

[Jeanie]

Thanks! From what those of you who've had them have said, it appears I've been stressed over that for nothing.
Jeanie
AVR? Bring it on!

 

[Faye]

I like your attitude!

Feel free to ask more questions and don't be afraid to reach out when you are worried. We have all been there or we soon will be. I firmly believe that my life pre and post surgery is better because of the VR.com folks.

 

[BlindFaith]

Hi Jeanie and welcome to VR. I only had the standard echo and then a cath, no TEE. My cardio suggested a mechanical valve and my surgeon answered that he (himself) would opt for a tissue. I chose tissue.

Ask anything you want... there are people here that can help.

 

[hall]

Hello and Welcome. I had a tee and the doc told me I could wait a couple of years until I had OHS. About a month later, I had OHS. THe tee itself was uneventful and I did not remember it at the time. It was not a big deal.

 

[catwoman]

Jeanie:

I have a really bad gagging reflex, so I was very relieved not to have to undergo a TEE before my MVR. It was done in the OR before they started my surgery, then after they attempted a repair. Finding it wasn't going to work, the surgeon replaced the valve & did another TEE.
That was in 2003.

In summer of 2007 & again in late June 2009, I had TEEs as an outpatient to assess the lateral regurge around my valve.
Both TEEs were very easy. The 2nd one was much easier -- different doctor did that one, from a different practice.
The 2009 TEE showed no difference from the one in 2007.

My husband had MV repair in May 2007. Both surgeons he wanted a consult with required a TEE & heart cath before they'd see him. We were concerned that John would not be able to swallow w/out a general anesthesia, but he did it OK. He has a much smaller mouth than many people -- can barely stick out his tongue!

 

[sue943]

I had two TEEs (or TOE as we say in the UK), the first when I was being treated for endocarditis and the second when I was on the operating table when I was asleep so they could see whether it was one or two valves they were replacing, they decided after seeing the results of the TOE to do the two.

For the first one the cardiologist sprayed my throat and said to swallow, the next thing that I can remember was him telling me that I had done well. They used a drug which erased my memory of the procedure, I wasn't sedated. If they told me I needed another tomorrow it really wouldn't worry me as the experience wasn't traumatic - I am a person who cannot even swallow a thickened soup.