Hello from the UK

[Hazel]

Hello, my name is Keith and I retired from work in 2010. I was diagnosed with Marfan's syndrome because of a heart murmur in the 1980s.

Recently my regular annual heart echocardiogram showed a change in aortic regurgitation from "moderate" to "severe" and he has sent me an appointment soon (Oct 13) rather than after a year (as normal). His letter also mentions a transoesophageal echocardiogram (TOE) though it's not clear whether I only have that if we decide to "intervene on the valve" which I assume means replace (it's bicuspid), or whether I should have the TOE anyway (to get a clearer view of the heart). My question is whether anyone has had the TOE done without sedation - is that viable or will it be so uncomfortable to preclude that?

I don't have much in the way of expected symptoms right now (e.g breathlessness).

(In the US I think TOE is called TEE)

 

[tom in MO]

I have never had it except right before valve replacement surgery and I was sedated for the AVR for bicuspid valve. So I cannot say if you'd be sedated or not. Many of us have no symptoms before surgery, so if you are having some, it could be time.

They should not have let you wait 3 years for Covid if you were getting annual echos. I started all my usual appointment after about 6 months of Covid. Make sure you stay after the NHS and get the appointments you need...be a good advocate for yourself.

 

[Chuck C]

Weclome to the forum Keith!

In the US I think TOE is called TEE

Yes, that is correct. Sorry that I can't help you with this question, as I just had regular echos not the TEO/TEE.

After a 3-year break because of Covid my regular annual heart echocardiogram

Was this by your choice, out of concern for Covid, or was this the policy of your system? I was diagnosed with aortic stenosis and a bicuspid valve 6 months before COVID and had my echos every 6 months all during the pandemic.

 

[pellicle]

My question is whether anyone has had the TOE done without sedation - is that viable or will it be so uncomfortable to preclude that?

I can't directly answer that question but can say I've had a oesophageal inspection down to my stomach done while I was "sedated" but it was not as twilight as it should have been. I did my best to be compliant with it but it was literally like being choked so my body made many reactions which I did my best to suppress (knowing they were not doing me harm).

I think it varies from person to person.

I would not say "I'll never do that again" but I would prefer that if it was needed they get the 'mix' better.

Also, welcome aboard!

Best Wishes

 

[Hazel]

so my body made many reactions

Thanks pellicle. What do you mean by "reactions"?

 

[Hazel]

I've removed the 3-year reference as that is in the past and is not relevant to my current situation. Please refrain from mentioning it in any further responses. To clarify the only symptoms I know of is lack of toleration of high altitudes and a low diastolic BP, and I've had those symptoms for many years.

 

[pellicle]

Thanks pellicle. What do you mean by "reactions"?

gagging, convulsions to vomit, the desire to pull it out of my throat ... some I could suppress others I couldn't

 

[Unicusp]

Yes, I can directly answer your question. I've had it done. TEE here. It's a medical procedure accompanied by an anesthesiologist and you are sedated during the procedure. The uncomfortable part is at the end when they remove the device and you feel gagged. Much worse than an echo but much better than OHS.

 

[Hazel]

There are some terms in the consultant's letter that I'm not sure what they mean. Obvs I can ask him tomorrow but it's good to understand as much as possible

1. "dynamic LV systolic function" I can find references to hyperdynamic but not dynamic

2. "moderate basal septal knuckle" I think that means some kind of distortion in the wall between the left and right of the heart

3. No cavity dilatation - no enlargement of the heart (left ventricle?)

4. Severe AR "seen to reach the apex of the LV with flow reversal in the arch"
I assume this is what makes it severe - blood is flowing back to reach the far end of the left ventricle
and the back flow starts in the aortic arch.

 

[KenH]

Hi, I had at TEE/TOE a few weeks before my OHS. They gave me a local anesthetic to gargle before giving me light anesthesia. I did not have any gag reactions or discomfort from the procedure. I stayed for an hour or two after the procedure then went home. I don't remember the procedure as being particularly difficult.

 

[Paleowoman]

Hi Keith - I had a TOE and I was given a general anaesthetic. I wasn't given a choice, they just said it would be under a general - which I was happy about. This was at the Royal Brompton Hospital as a day patient. That was not before I had AVR to replace my bicuspid valve though, it was three years after when a TOE was needed to look better at the valve replacement. They clearly can get a better look at a valve with a TOE if they need to visual it better.

 

[PAN]

Have a had a few. No memory of any of them.

First one felt like I had been asleep for 10 hours. Amazing feeling . Second one failed to deliver in that sense All the best with it..

P

 

[Rebecca]

11 years ago I had a tee done. I was given something to gargle with to numb my throat. I also was given some drug maybe by pill as a light anesthesia. I was awake and remember telling the doctor that did it that I had seen him once before. He checked my records and told me I was right. Like any procedure not fun but not that awful. I was in a training hospital and I could hear the doctor explaining the picture on the screen to the student doctor in training. After I knew he had the needed pictures and then started going into this is this and that is that I cough and my doctor
immediately removed the tube. The procedure does want to make you cough. I don't think I was allowed to drive home.

 

[Deepak khanka]

Hello, my name is Keith and I retired from work in 2010. I was diagnosed with Marfan's syndrome because of a heart murmur in the 1980s.

Recently my regular annual heart echocardiogram showed a change in aortic regurgitation from "moderate" to "severe" and he has sent me an appointment soon (Oct 13) rather than after a year (as normal). His letter also mentions a transoesophageal echocardiogram (TOE) though it's not clear whether I only have that if we decide to "intervene on the valve" which I assume means replace (it's bicuspid), or whether I should have the TOE anyway (to get a clearer view of the heart). My question is whether anyone has had the TOE done without sedation - is that viable or will it be so uncomfortable to preclude that?

I don't have much in the way of expected symptoms right now (e.g breathlessness).

(In the US I think TOE is called TEE)

Hi Keith

Hi Keith - I had a TOE and I was given a general anaesthetic. From admission to recovery approx. 1.30 hrs did it in Essex UK

 

[ValveAdmin]

Welcome to the forum!