Can Someone Help Me? Tee From You Know Where

[dj/utvolsfan]

Yesterday was my second TEE. First was by same doctor in 2001. This one was the worst medical experience I have ever had. I was asked to count back from 100. I honestly was very aware of my counting and when I reached 35 I told them it wasn't working. Then I made a mistake in counting and actually corrected myself. That was the mistake they were waiting for. They were on me like flies. In goes the scope. Needless to say I was somewhat hysterical. I felt it all. I heard it all and pretty much tried my darndest to pull the scope out all during the procedure. Gagging all the way through the TEE so much my stomach today feels like I had a major workout. How pathetic!!!1
That told, I can't tell if I received good news or bad news. I still have moderate regurge and stenosis, but not enough to cause issues I have with the excessive and uncoordinated squeezing of my heart. No valve replacement. Figures it wouldn't help. Dr. Carter is at a loss as to why my heart is functioning or I should say not functioning as it should. He is consulting with his colleagues today. I have a limited echo scheduled on Monday. He also mentioned I should go to Cleveland Clinic. Mentioned something about having heart lining scraped or something like that. He told me all this right after the procedure which tells you I was wide awake and shouldn't have been. He also went out to the waiting room and told my daughters the same thing. This shows me I was coherent two seconds after the TEE.
Oh well, if anyone has a clue as to what is possibly going on, I would really appreciate it. Right now, I was hoping for answers and received nothing but more confusion and frustration.
Thanks everyone!
Debbi

 

[Ross]

Debbi I wish I had a clue. At this point, I'd certainly follow up at the Cleveland Clinic as suggested. You need to see the people that wrote the book on hearts.

 

[Nancy]

Quote: "Mentioned something about having heart lining scraped or something like that."

Did he mention anything about a pericardectomy? That is removal of the pericardium (lining) of the heart.

Was anything mentioned about scar tissue or constrictive or restrictive heart disease?

You mentioned uncoordinated squeezing of your heart. Was anything mentioned about arrhythmia or a Holter monitor or electrophysiology study of your heart?

Cleveland Clinic sounds like a good idea.

 

[dj/utvolsfan]

Very little info shared

Very little info shared

Hey, Thanks for your reply. No, I didn't hear him say anything about any of the conditions or treatments you mentioned nor did my daughters with the post-op report. He seems stumped...which is never a good thing. Does the scraping of the lining require open heart or is it invasive type procedure?? You guys are so knowledgeable and I for one certainly appreciate you sharing your wealth of info.
I am getting ready to call my doctor's office shortly. Hopefully I will have more answers and will report back.
Anyone hear from TammyM? I;ve been worried about not hearing from her.
Thanks again.

 

[tobagotwo]

Wow, what a great spot for an I-told-you-so. Unfortunately, totally inappropriate.

I'm truly sorry to hear you had such a bad experience with the TEE. As you know, it doesn't have to be that way. I would definitely confront the doctor with it. It was bad practice, and you telling him so may reduce his chance of doing it to the next person. It just makes me mad: it's so unnecesssary.

There is a chance of pericardial involvement, as Nancy has pointed out. However, that frequently creates dense tissue that interferes with a standard echo, which hasn't been mentioned at this point.

Cleveland Clinic is an excellent suggestion, as it is often considered the best cardiac center in the world.

Best wishes,

 

[dj/utvolsfan]

Bob, I'll take your ' I told you so' ....NOW

Bob, I'll take your ' I told you so' ....NOW

Bob, you were right with what you said earlier about the questionable TEE. I have to give you credit. Man, I am somewhat of a novice regarding all this heart stuff. My throat is still hurting quite a bit. but my biggest irriitation comes from what happened during the tee. I am going to be seeing my doctor on the 12th for a limited echo.
I am a sweet natured kind of person (even if i say so myself but no one should have to go through that. I will have to say something. Once again, why do I need another echo when I just had one last week? Does any of this make sense to you? Geez, US News reported CAMC as being a top heart center. I'm starting to have my doubts. I have already filled out the Patient Satisfaction Report and stuck it in the mail earlier this morning. It wasn't pretty.
I am also bummed today cause I received results from an ana reading. One of the meds I was on and ws taken off of (triamenterene) is known to bring on drug-induced lupus. Of course it did in my case. Well, since being off of it for about 5 months, my symptoms have completely disappeared. It was external lupus by the way. Well my ana blood work came back positive. I just don't get it. Any idea if blood work is slower showing normal when compared to symptoms> I didn't ask that very scientifically but hopefully you get it.
Well, I am going to pout a little longer before I start the rest of my day as a happy person.
Thanks again! Debbi

 

[dj/utvolsfan]

Guess who just called???

Guess who just called???

Bob, Thought you would be pleased as much as I was....my cardio just called me just simply to apologize for his lack of compassion and judgement. Told me I was a trooper! Sounds like a plea...please don't sue!!! Like I would anyway! We've always had a wonderful relationship! He must have been a having a bad day AND as a
result I sure did too!
Debbi

Wow, what a great spot for an I-told-you-so. Unfortunately, totally inappropriate.

I'm truly sorry to hear you had such a bad experience with the TEE. As you know, it doesn't have to be that way. I would definitely confront the doctor with it. It was bad practice, and you telling him so may reduce his chance of doing it to the next person. It just makes me mad: it's so unnecesssary.

There is a chance of pericardial involvement, as Nancy has pointed out. However, that frequently creates dense tissue that interferes with a standard echo, which hasn't been mentioned at this point.

Cleveland Clinic is an excellent suggestion, as it is often considered the best cardiac center in the world.

Best wishes,

 

[Mama2Rylan]

Sorry to hear you had such a terrible experience with your TEE...but from my understanding not everyone is put under while having he procedure done. I had my TEE done almost two years ago...well I was about 4 months pregnant at the time and they told me that any kind of anesthesia would not be good for my baby...so they were just going to numb my throat.. the doctor then proceeded to tell me that this procedure was very simple, most people just sleep through it...they even put on "soothing" music for me to listen to...

Well of course the numbing medication did NOT work and for the 45 minutes the test took, I felt like I was going to DIE...it was the worst experience in my ENTIRE life....I cried the whole time and kept biting at the tube...I would NEVER go through that test again unless I would be COMPLETELY out But I am very sorry to hear you went through all of that, because I can honestly say "I HAVE BEEN THERE"....

 

[dj/utvolsfan]

Thanks Mama2Rylan

Thanks Mama2Rylan

Isn't it amazing what we wll endure for the good of our babies! You must have been a strong person. At least I had some amount of valium but from what I experienced I would guess about a pin drop of the stuff. I was SO aware that I wasn't sedated at all. Gagged and cried and tugged my way through it. I shudder at the thought. By the way,my cardiologist called me this morning to apologize. How sweet! A little late but sweet just the same.

Have a good day!
Debbi

Sorry to hear you had such a terrible experience with your TEE...but from my understanding not everyone is put under while having he procedure done. I had my TEE done almost two years ago...well I was about 4 months pregnant at the time and they told me that any kind of anesthesia would not be good for my baby...so they were just going to numb my throat.. the doctor then proceeded to tell me that this procedure was very simple, most people just sleep through it...they even put on "soothing" music for me to listen to...

Well of course the numbing medication did NOT work and for the 45 minutes the test took, I felt like I was going to DIE...it was the worst experience in my ENTIRE life....I cried the whole time and kept biting at the tube...I would NEVER go through that test again unless I would be COMPLETELY out But I am very sorry to hear you went through all of that, because I can honestly say "I HAVE BEEN THERE"....

I

 

[Nancy]

Joe has had a ton of TEEs. He did have one terrible experience, and it was from a very young and inexperienced doctor. Joe NEVER complains about anything they do and he's had some beauts of tests. But this one was horrible.

The numbing stuff didn't work, and he wasn't sedated either. The doctor just shoved the transducer down his throat, while he was choking away, just like you.

I try to mention this to all those going for a TEE so you have a head's up and can tell the doctor in no uncertain terms that you want to be knocked out and you want them to make sure it takes. And so you can request the MOST experienced doc who does these.

The other ones he had were a breeze and were with very experienced docs who knew what the heck they were doing.

No need for you to be someone's first experiment, or second or third, if they are incompetent.

So, it doesn't have to be that way at all. Make sure you don't get that guy again, and share your experience with anyone else who has heart problems.

I'm not sure he was being extremely nice to you just 'cause he's such a good guy, as much as trying to thwart a formal complaint by you. There have been recent articles that if a doctor does something wrong, if they apologize, they save lawsuits or complaints.

Frankly, I think you might consider reporting the incident to his boss, if he has one, not in a formal way, but to make sure he doesn't do that to anyone else.

It's bad and it shouldn't happen, plus it could damage you throat.

 

[Christian]

Bob, you were right with what you said earlier about the questionable TEE. I have to give you credit. Man, I am somewhat of a novice regarding all this heart stuff. My throat is still hurting quite a bit. but my biggest irriitation comes from what happened during the tee. I am going to be seeing my doctor on the 12th for a limited echo.
I am a sweet natured kind of person (even if i say so myself but no one should have to go through that. I will have to say something. Once again, why do I need another echo when I just had one last week? Does any of this make sense to you? Geez, US News reported CAMC as being a top heart center. I'm starting to have my doubts. I have already filled out the Patient Satisfaction Report and stuck it in the mail earlier this morning. It wasn't pretty.
I am also bummed today cause I received results from an ana reading. One of the meds I was on and ws taken off of (triamenterene) is known to bring on drug-induced lupus. Of course it did in my case. Well, since being off of it for about 5 months, my symptoms have completely disappeared. It was external lupus by the way. Well my ana blood work came back positive. I just don't get it. Any idea if blood work is slower showing normal when compared to symptoms> I didn't ask that very scientifically but hopefully you get it.
%0
%0
Well, I am going to pout a little longer before I start the rest of my day as a happy person.
Thanks again! Debbi

If CAMC is the "Charleston Area Medical Center," run for Cleveland right away. We lived in Charleston WV for nearly three years and the quality of cardiac care that we received was poor compared both to Cleveland and our current hometown (Pittsburgh). The doctors were very well-intentioned but totally out of their element when it came to valve disorders.

I know a family in Hurricane -- the Kincaids. I went to graduate school and still keep in touch with their daughter Maggie.

 

[dj/utvolsfan]

Hey Christian

Hey Christian

Thanks for your note. Maggie sounds familiar to me. How old is she? I teach at the mddle school and wonder if she went through HMS since I have been there. Also, I asked my son, 19 years old, but he didn't know her. I will have to ask my daughters, 23 and 21. Did you go to grad school at Marshall?
Yes, it is Charleston Area MEd Center. If CAMC is #50 in US News report , what must the other unrated places be like???? Last year CAMC was supposedly in the Top 10 according to a billboard near the hospital. I am very disappointed. I am sure Dr. Carter was attempting to smooth my ruffled feathers in lieu of a lawsuit or major complaint. He's highly regarded but getting up there in years and seems wishy washy to me in the last visit or two. I've already sent in my patient satisfaction survey...should say patient dissatisfaction survey!
Well, just another reason to hate living in West Virginia. What can I say? I would love to head south one of these days. In the meantime, I do believe that Cleveland Clinic is the place for me. I am going to have Dr. Carter write the referral for me this next week.
Take good care of yourself!

If CAMC is the "Charleston Area Medical Center," run for Cleveland right away. We lived in Charleston WV for nearly three years and the quality of cardiac care that we received was poor compared both to Cleveland and our current hometown (Pittsburgh). The doctors were very well-intentioned but totally out of their element when it came to valve disorders.

I know a family in Hurricane -- the Kincaids. I went to graduate school and still keep in touch with their daughter Maggie.

 

[dj/utvolsfan]

Experienced Doctor

Experienced Doctor

Sad to say, but my doctor is as old as these West Virginia hills. Geez, you would think he would know better. Plus once he started the TEE and saw that I was indeed not 'out', why couldn't he have given me more valium then?
Makes no sense at all. Also, I usually am so strong and unafraid of these procedures, but yesterday I actually had trouble prior to the TEE with a steady stream of tears. An 'in touch with his patients' kind of doctor would have made extra sure I was comfortable. Oh well, it WON'T happen again.

Joe has had a ton of TEEs. He did have one terrible experience, and it was from a very young and inexperienced doctor. Joe NEVER complains about anything they do and he's had some beauts of tests. But this one was horrible.

The numbing stuff didn't work, and he wasn't sedated either. The doctor just shoved the transducer down his throat, while he was choking away, just like you.

I try to mention this to all those going for a TEE so you have a head's up and can tell the doctor in no uncertain terms that you want to be knocked out and you want them to make sure it takes. And so you can request the MOST experienced doc who does these.

The other ones he had were a breeze and were with very experienced docs who knew what the heck they were doing.

No need for you to be someone's first experiment, or second or third, if they are incompetent.

So, it doesn't have to be that way at all. Make sure you don't get that guy again, and share your experience with anyone else who has heart problems.

I'm not sure he was being extremely nice to you just 'cause he's such a good guy, as much as trying to thwart a formal complaint by you. There have been recent articles that if a doctor does something wrong, if they apologize, they save lawsuits or complaints.

Frankly, I think you might consider reporting the incident to his boss, if he has one, not in a formal way, but to make sure he doesn't do that to anyone else.

It's bad and it shouldn't happen, plus it could damage you throat.

 

[dj/utvolsfan]

One more thing

One more thing

My throat is still very sore today. Having a hard time swallowing. Not as bad as yesterday but still quite noticeable. I can't remember my throat hurting as long as this time.
Oh, I also have a femur hernia which needs to be operated on but has somewhat retracted and was not causing any problems. This morning I woke up with alot of pain from the distended hernia. I am sure from all the grunting and thrashing around! Oh, wow, I sound like I have way too many issues! Sorry everyone. I truely am not a coward, I swear

Sad to say, but my doctor is as old as these West Virginia hills. Geez, you would think he would know better. Plus once he started the TEE and saw that I was indeed not 'out', why couldn't he have given me more valium then?
Makes no sense at all. Also, I usually am so strong and unafraid of these procedures, but yesterday I actually had trouble prior to the TEE with a steady stream of tears. An 'in touch with his patients' kind of doctor would have made extra sure I was comfortable. Oh well, it WON'T happen again.

 

[Natanni]

My throat is still very sore today. Having a hard time swallowing. Not as bad as yesterday but still quite noticeable. I can't remember my throat hurting as long as this time.
Oh, I also have a femur hernia which needs to be operated on but has somewhat retracted and was not causing any problems. This morning I woke up with alot of pain from the distended hernia. I am sure from all the grunting and thrashing around! Oh, wow, I sound like I have way too many issues! Sorry everyone. I truely am not a coward, I swear

Wow! What a bad experience! My husband has had 2 TEEs in the last month, and the first was an absolute breeze, and the 2nd (done with the same staff) not quite as easy but lasting longer as they were assessing his PICC line as well. I assist in general surgery and had asked that they really knock hubby out and they did. Both times he was given a numbing swallow, twice prior to putting in the bite block (mouth piece). I believe he was given fentenyl and versed and he was out seconds after the bite block was in. He started to wake up as they were withdrawing the probe after the first time, with no discomfort, and this second time he did recall a dash of gag upon insertion, as well as a bit more with withdrawl. He had a mild sore throat, more dry, for 2 days post TEE which was greatly improved by drinking lots of water, plain water. In general surgery we do gastroscopies, which are the very same method except we go father down the esophogus but we don't have a gel lidocaine swallow, we spray the throat out with a numbing agent.

Make sure you inform the next doc you see about this difficult experience you had so that they can be sure you are properly handled next time! I understand about not ever wanting another. Hubby had a horrible time with his cardiac cath in June after being told that this is just a breeze and it was found they didn't obtain the necessary info and needs to be repeated and he is absolutely refusing. No problem about the heart surgery, but cardiac cath? Forget it.....

 

[dj/utvolsfan]

Hey Natanni

Hey Natanni

How vital is it that your hubby have the repeat cath? You could always give him two options....go shopping with you all day or have the cardiac cath? Would that work? I am sure I will have more TEE's in the future but I will ask for another doctor and will duct tape my own mouth shut until I am completely out. Then they can mess with me. Bad times!!!!!! I've had one cath. It wasn't much of a problem at all. I do remember watching everything on the screen and being thrilled that I had the arteries of a 20 year old! I must have been 46 at the time. The two orderly type guys were teasing me about who did I want to shave me? How professional! I didn't care. I was loopy by that point. I chose the cutest one but I think he was gay!!!!!!

Wow! What a bad experience! My husband has had 2 TEEs in the last month, and the first was an absolute breeze, and the 2nd (done with the same staff) not quite as easy but lasting longer as they were assessing his PICC line as well. I assist in general surgery and had asked that they really knock hubby out and they did. Both times he was given a numbing swallow, twice prior to putting in the bite block (mouth piece). I believe he was given fentenyl and versed and he was out seconds after the bite block was in. He started to wake up as they were withdrawing the probe after the first time, with no discomfort, and this second time he did recall a dash of gag upon insertion, as well as a bit more with withdrawl. He had a mild sore throat, more dry, for 2 days post TEE which was greatly improved by drinking lots of water, plain water. In general surgery we do gastroscopies, which are the very same method except we go father down the esophogus but we don't have a gel lidocaine swallow, we spray the throat out with a numbing agent.

Make sure you inform the next doc you see about this difficult experience you had so that they can be sure you are properly handled next time! I understand about not ever wanting another. Hubby had a horrible time with his cardiac cath in June after being told that this is just a breeze and it was found they didn't obtain the necessary info and needs to be repeated and he is absolutely refusing. No problem about the heart surgery, but cardiac cath? Forget it.....

 

[geebee]

Debbi,

I have only had one TEE and it was not pleasant. I had a lot of problems with gagging but once the doctor reminded me to breathe through my nose, I was less panicked and got through OK. However, I was not out either and remember everything about it.

It sounds like your doctor doesn't really have the answers or abilities you require. I would replace him and head to Louisville, Cincinnati or Cleveland depending on how far you want to travel. Of course, Cleveland seems to be the place of choice, but both Louisville and Cincinnati have wonderful heart programs. I had my last surgery in CIncinnati and would do so again if needed.

It sounds like your doctor didn't really give you any useful answers (at least so far) about what he found during the TEE. Hopefully you can get additional info when you see him.

Best of luck. Let me know if I can help.

 

[dj/utvolsfan]

Hey Gina

Hey Gina

Cleveland it is! I have been wondering and worrying so much lately I really don't care how far I would have to travel to get some answers. I'll have to check with map quest and see about how far Cleveland Clinic is from me. I have no doubt I will be in the best of hands there and I am sure I will find out EXACTLY what is going on with my heart!
You have been great to give me encouragement and advice. I will definitely come knocking if I have any more questions.
Take care!
Debbi

Debbi,

I have only had one TEE and it was not pleasant. I had a lot of problems with gagging but once the doctor reminded me to breathe through my nose, I was less panicked and got through OK. However, I was not out either and remember everything about it.

It sounds like your doctor doesn't really have the answers or abilities you require. I would replace him and head to Louisville, Cincinnati or Cleveland depending on how far you want to travel. Of course, Cleveland seems to be the place of choice, but both Louisville and Cincinnati have wonderful heart programs. I had my last surgery in CIncinnati and would do so again if needed.

It sounds like your doctor didn't really give you any useful answers (at least so far) about what he found during the TEE. Hopefully you can get additional info when you see him.

Best of luck. Let me know if I can help.

 

[Gail in Ca]

Your experience is horrible. I have had 2 AVR surgeries and never had a TEE, thank God. I would change docs. My daughter just had an endoscopy and was 'out' for the whole procedure. She doesn't remember swallowing that camera. Why can't they do this for everyone who has to swallow a scope?
Gail