Many UK / NHS members? Today's routine check up wasn't routine!

[3mm]

From Wikipedia: "A transesophageal echocardiogram, or TEE (TOE in the United Kingdom and other countries such as Australia and New Zealand, reflecting the British English spelling transoesophageal)".

FYI, regarding "jets"

"jets" will be coming from the central apex of the valve leaflets

My TEE showed "mild aortic insufficiency" in the aortic valve, so I thought my aortic valve was in pretty good shape, and could be repaired. But the aortic valve is hard to see, so the estimates on it can be wrong.

The TEE also showed mitral valve regurgitation "at least moderate in severity". Because the mitral valve regurgitation (the jet) was "anteriorly directed", the TEE can underestimate the severity.

When I got to Mayo Clinic the old, experienced surgeon said he thought the aortic valve was actually in poor condition and would need to be replaced. He was right, so I now have a mechanical aortic valve.

I don't want to scare you, but I do want to ensure that you understand this TEE (TOE) while very useful, does not give definitive answers to all relevant questions. Each of us must trust our surgeon.

 

[Varago33]

Today's annual echocardiogram did not result in the usual - all good, see you in a year!

My (35m) bicuspid aortic valve was found around 15 years ago by chance when I was experiencing palpitations likely caused by stress at work. I've always been asymptomatic, never given advice or had any real conversation as I guess it's never warranted it. I've always been told there is a mild 'leak' which I've not really understood but I now believe to be known as mild regurgitation.

At today's appointment I was told the regurgitation has gotten worse and I'll need a transoesophageal echocardiogram. This will be followed by a chat with the consultant and then a surgeon. The person doing the scan I've seen for almost all my previous scans; it was at a cardiac physiologist-led clinic and they attempted to get the consultant to speak with me but they weren't available.

I'm now waiting for my transoesophageal echocardiogram and have no real sense how urgent this will end up being. It's too easy to make links that aren't there but these past 6 months I've started having high blood pressure, headaches (reduced a lot recently however) and getting more tired that usual. However lots of change in my life so not so easy to say I'm becoming symptomatic or not. I've also lost a significant amount of weight (planned!) this past 2 years and been a regular at the gym lifting heavy which sometimes makes me feel dizzy. I've been reading on here about weight lifting... almost shocked I've not actually had any advice previously!

Have been reading a lot today and worldwide experience has been very helpful; keen for any UK / NHS experiences in particular - waiting times etc!

Only a limited introduction I guess as I know little about how bad it is. Is surgery urgent or can be planned in to the future etc!

Ankle scan on third week of Jan?

I dont know if you have read any of my post but for some reason I feel compelled to tell my experience.

Back on Dec 1 1969 I was blessed with a 102 draft number and a few weeks later came the draft notice.
So at Fort Bragg NC in June 1970 at the entrance physical, I was told I had a heart murmur but not to worry about it (( So up till a few years ago with my yearly physical, only about 50% of my GP's even mentioned the murmur and when they did they all said the same thing "DONT WORRY ABOUT IT"

So with a NEW GP at the end of the meeting he stopped and told me to "talk to wife and figure when the SOONEST we do it" I guess the look on my face told him DO WHAT ?. Meet me at the hospital for the valve replacement operation. Needless to say that scared the crap out me and I answered When can you do it and he said this friday. Fine I will be there.

Dont take a passive stance on this, its your life.

Now for the recovery, It was the most pain full thing in my life for the first 2 weeks. At the hospital I was on morphine and had next to no pain. The reason why I am telling you this is the Hospital staff NEVER told me anything about the level of the pain OR how to deal with it.

Side note this: They did give me a pain pill a bit before check out that was WONDERFULLLLL BUT once at home and it wore off, I did not know where I was or who I was My wife had to go pick up the prescriptions and a few minutes later my 15 YO daughter came home. I heard the door open and close and someone enter the house. I called out "WHO IS THERE" to which she responded its me Melissa and I said "WHO ARE YOU", she is my youngest daughter.

 

[SwansCity1912]

Ankle scan on third week of Jan?

From Wikipedia: "A transesophageal echocardiogram, or TEE (TOE in the United Kingdom and other countries such as Australia and New Zealand, reflecting the British English spelling transoesophageal)".

FYI, regarding "jets"

My TEE showed "mild aortic insufficiency" in the aortic valve, so I thought my aortic valve was in pretty good shape, and could be repaired. But the aortic valve is hard to see, so the estimates on it can be wrong.

The TEE also showed mitral valve regurgitation "at least moderate in severity". Because the mitral valve regurgitation (the jet) was "anteriorly directed", the TEE can underestimate the severity.

When I got to Mayo Clinic the old, experienced surgeon said he thought the aortic valve was actually in poor condition and would need to be replaced. He was right, so I now have a mechanical aortic valve.

I don't want to scare you, but I do want to ensure that you understand this TEE (TOE) while very useful, does not give definitive answers to all relevant questions. Each of us must trust our surgeon.

Ah, I didn't realise the TOE vs TEE was due to spelling - thanks for sharing!

I'm not sure how soon I'll get access to a surgeon; I suspect it will be very much under the control of my current consultant which is using the TOE/TEE scan as a factor.

A lot of my positive feeling at having a date for the TOE is progress! And I'll get to speak with my consultant and have a better understanding of when surgery might be. Even a 'within 3 months' or 'within 12 months' type thing be great!

I dont know if you have read any of my post but for some reason I feel compelled to tell my experience.

Back on Dec 1 1969 I was blessed with a 102 draft number and a few weeks later came the draft notice.
So at Fort Bragg NC in June 1970 at the entrance physical, I was told I had a heart murmur but not to worry about it (( So up till a few years ago with my yearly physical, only about 50% of my GP's even mentioned the murmur and when they did they all said the same thing "DONT WORRY ABOUT IT"

So with a NEW GP at the end of the meeting he stopped and told me to "talk to wife and figure when the SOONEST we do it" I guess the look on my face told him DO WHAT ?. Meet me at the hospital for the valve replacement operation. Needless to say that scared the crap out me and I answered When can you do it and he said this friday. Fine I will be there.

Dont take a passive stance on this, its your life.

Now for the recovery, It was the most pain full thing in my life for the first 2 weeks. At the hospital I was on morphine and had next to no pain. The reason why I am telling you this is the Hospital staff NEVER told me anything about the level of the pain OR how to deal with it.

Side note this: They did give me a pain pill a bit before check out that was WONDERFULLLLL BUT once at home and it wore off, I did not know where I was or who I was My wife had to go pick up the prescriptions and a few minutes later my 15 YO daughter came home. I heard the door open and close and someone enter the house. I called out "WHO IS THERE" to which she responded its me Melissa and I said "WHO ARE YOU", she is my youngest daughter.

Thank you for sharing. I think once I find out what the steps toward surgery looks like I'm going to have a lot of questions.

 

[dornole]

In my case I have had two TEEs based on concerning findings on my regular echo - both times, the TEE showed the valve to be in better condition than the regular echo indicated, and they put me back on 6 month and then annual monitoring. The TEE served a dual purpose - confirm / deny the echo findings, and if confirmed, to help inform surgery as well.

 

[jimbob123]

Hi

I've only just joined this forum (today) and I've just posted a new thread with my own story. I live in the UK and I've just had an aortic valve replacement. I've had a couple of TTE and one TOE, if you have any questions I may be able to help.

NB I'm addressing the original poster, but happy to share my experiences to anyone.


Jim

 

[Varago33]

My advice is when you "hear dont worry about it", your reply should be NEXT and walk out.


Ah, I didn't realise the TOE vs TEE was due to spelling - thanks for sharing!

I'm not sure how soon I'll get access to a surgeon; I suspect it will be very much under the control of my current consultant which is using the TOE/TEE scan as a factor.

A lot of my positive feeling at having a date for the TOE is progress! And I'll get to speak with my consultant and have a better understanding of when surgery might be. Even a 'within 3 months' or 'within 12 months' type thing be great!



Thank you for sharing. I think once I find out what the steps toward surgery looks like I'm going to have a lot of questions.

 

[3mm]

just had an aortic valve replacement

Jimbo123 - I hope your recovery is progressing well! What kind of valve did you get? How long ago? Are you at home, walking, doing cardiac rehab classes, etc?

 

[jimbob123]

Jimbo123 - I hope your recovery is progressing well! What kind of valve did you get? How long ago? Are you at home, walking, doing cardiac rehab classes, etc?

I went for tissue (bovine) and surgery was around 5 weeks ago (6th November). I'm home, walking (can walk for 45 mins with the dogs), and feeling mostly fine. I'm registered with cardio rehab and they've been very helpful, but I'm not doing any formal physio until I finish the antibiotics on 18th Dec.

 

[Jase_101]

Today's annual echocardiogram did not result in the usual - all good, see you in a year!

My (35m) bicuspid aortic valve was found around 15 years ago by chance when I was experiencing palpitations likely caused by stress at work. I've always been asymptomatic, never given advice or had any real conversation as I guess it's never warranted it. I've always been told there is a mild 'leak' which I've not really understood but I now believe to be known as mild regurgitation.

At today's appointment I was told the regurgitation has gotten worse and I'll need a transoesophageal echocardiogram. This will be followed by a chat with the consultant and then a surgeon. The person doing the scan I've seen for almost all my previous scans; it was at a cardiac physiologist-led clinic and they attempted to get the consultant to speak with me but they weren't available.

I'm now waiting for my transoesophageal echocardiogram and have no real sense how urgent this will end up being. It's too easy to make links that aren't there but these past 6 months I've started having high blood pressure, headaches (reduced a lot recently however) and getting more tired that usual. However lots of change in my life so not so easy to say I'm becoming symptomatic or not. I've also lost a significant amount of weight (planned!) this past 2 years and been a regular at the gym lifting heavy which sometimes makes me feel dizzy. I've been reading on here about weight lifting... almost shocked I've not actually had any advice previously!

Have been reading a lot today and worldwide experience has been very helpful; keen for any UK / NHS experiences in particular - waiting times etc!

Only a limited introduction I guess as I know little about how bad it is. Is surgery urgent or can be planned in to the future etc!

I have had a transoesophageal echocardiogram (TOE) and I can say that whilst its not the most pleasant experience it was not as bad as I was expecting. Definitely have the sedative as it will far easier and hardest part is when the tube is passed down your throat and you will be asked to swallow while this is happening but once its through to the stomach you can then relax, its takes approx 10-15 mins and I am sure will be fine.

 

[jimbob123]

When I had mine, the consultant put the little plastic tube in my mouth ("silence of the lambs" style), and connected up the sedative to my existing venflon/cannula. "We'll wait a few moments for this to take effect", he said.

Those were the last words I heard, I have absolutely zero recollection of being asked to swallow anything! I was completely zonked. I woke up in the ward five hours later. I only knew it had been completed due to a sightly sore throat.

10mg of Midazolam is what sent me to la-la-land!


Jim

 

[carolinemc]

I have had a transoesophageal echocardiogram (TOE) and I can say that whilst its not the most pleasant experience it was not as bad as I was expecting. Definitely have the sedative as it will far easier and hardest part is when the tube is passed down your throat and you will be asked to swallow while this is happening but once its through to the stomach you can then relax, its takes approx 10-15 mins and I am sure will be fine.

We have had that in the USA. we do it before OHS. You will be fine.

 

[oo0My_Valve0oo]

When I had mine, the consultant put the little plastic tube in my mouth ("silence of the lambs" style), and connected up the sedative to my existing venflon/cannula. "We'll wait a few moments for this to take effect", he said.

Those were the last words I heard, I have absolutely zero recollection of being asked to swallow anything! I was completely zonked. I woke up in the ward five hours later. I only knew it had been completed due to a sightly sore throat.

10mg of Midazolam is what sent me to la-la-land!


Jim

Interesting. I wonder whether you were conscious but just did not remember anything going on. Your description suggests you went unconscious but Midazolam causes amnesia but does make you unconscious. I guess the less "out" the safer. An anesthesiologist takes you close to death. They say alcohol intoxication has the same stage-by-stage incremental process as strong anesthesia except without the (sober) devoted specialist monitoring everything.

I like it when I arrive for prep and the nurse asks "Would you like some Vallium?" and when I watch the injection that puts me out going into the intravenous line and I wake up when it is all over.

 

[SwansCity1912]

The transoesophageal echocardiogram didn’t go as planned today. I couldn’t tolerate it even with sedation so after three attempts they gave up. Got to go back for the same procedure but need to be asleep next time.

Consultant did however do an echocardiogram and did confirm severe regurgitation. They have ordered a CT scan (I think) in addition but definitely another type of scan. All for preparation for surgery.

Rough timeline was 2 months to get the scans done, two month to speak with surgeon and then two month for surgery. So surgery around 6 months time.

Very frustrated with myself I couldn’t managed the scan today.

And I know it doesn’t matter in the grand scheme of things but hate the idea of cancelling two trips away we’ve got booked with the kids. They will be disappointed no matter how much they will understand.

 

[jimbob123]

Wow, intruiging. For me, they gave me the local, then the sedative, and then I woke up four hours later, with zero recollection. I wonder if it's because I was so shattered from lack of sleep? The consultant did say that I put up a fight and that I was hard work, but I guess you put up a better fight.

Those timelines sound long. I was 13 days between presenting at hospital and having surgery, with 2x TTE, 1x TOE and 1x CT in that time - and I lost count of chest xrays and ECGs. Waiting six months won't be much fun.

Reach out of you have any questions, I'd be happy to help or have a chat to recount my own experiences.

 

[SwansCity1912]

Wow, intruiging. For me, they gave me the local, then the sedative, and then I woke up four hours later, with zero recollection

They tried without the sedation first and honestly I think that’s the mistake they made. But even with the sedative I was fully aware of what was going on. I was starting to cough and that seemed to be the main issue.

Those timelines sound long. I was 13 days between presenting at hospital and having surgery, with 2x TTE, 1x TOE and 1x CT in that time - and I lost count of chest xrays and ECGs. Waiting six months won't be much fun.

They’ve been keeping an eye on this annually for ~15 years. So not had an issue to take me to A&E; not sure if that’s why?

Reach out of you have any questions, I'd be happy to help or have a chat to recount my own experiences.

Thank you. Not looking forward to this next 6 months in all honesty.

 

[pellicle]

Very frustrated with myself I couldn’t managed the scan today.

don't be hard on yourself ... it is what it is. I had one done and it was "challenging".

They'll get the imaging needed another way (sedation)

 

[dornole]

Yeah, it mystifies me that they even try it on anyone without sedation - I mean, what the heck? I guess there are people who can tolerate it? Not me, for sure! Maybe this can count as your one and only bump in the road (fingers crossed)

 

[Gail in Ca]

Sorry yours was not doable. The anesthesiologist asked me if I wanted to be more awake or less awake before my first one because I had said I wanted to be out. So, after the numbing spray in my throat I didn’t recall anything when I woke up. However, I had one in the hospital and was more awake than I wanted. I remember trying to point to let them know I was feeling the camera do dad in there. Someone just grabbed my hand and stopped me. It felt like a wooden spoon handle was inside me. Not fun!
Too bad your wait times seem long for tests. I’m surprised they don’t try to get you to the front of the line. Hopefully, it’s less than 6 mos but if not it will probably go by pretty quickly.