How long after symptom onset did you have surgery?

[Zara0006]

Hi all,

I’ve been advised that I’ll need AVR for BAV, from the last echo which was in May. I’ve had a CT angiogram a few days ago and haven’t got the results yet, but was told that my surgery will be 3 to 4 months, which I assume is due to NHS waiting lists. My symptoms have become worse over the past 3 months which I initially thought were due to anxiety, but recently I’ve had shortness of breath just from walking up stairs or carry something slightly heavy.

I’m aware that prognosis is not good after symptom onset which is giving me major anxiety while waiting for the surgery. So I think what I’m wanting to know is if anyone else has waited this long to have surgery? It took the hospital a few months to let me know what the results of my echo were, so I assumed I was imagining the symptoms until I was told about the severe stenosis. Any input would be much appreciated!

 

[Chuck C]

Hi Zara and welcome to the forum.

I had my surgery once my aortic stenosis became severe, before the onset of symptoms. I was given a choice whether to proceed with surgery soon, or wait until symptoms started. It was understood that if I decided to wait for symptoms, that they would get me in pretty quickly and not delay.

We've heard a lot of stories about the NHS making symptomatic patients wait significant amounts of time, which is unfortunate. Do you have any other options? Is there a private option that would enable you to get surgery sooner?

 

[pellicle]

Hi

I had a look at your bio (the "about" section you've partially filled out), but I didn't see anything about your age or your other condition of health, nor any sort of guide as to how active you have been (like club level cyclist or weight lifter or just sedentary). Next, being an Australian "things are different here" in terms of medical system.

However on to your points these are all factors which bode one way or another into the matrix of working out your urgency and working out what happens.

I’ve had a CT angiogram a few days ago and haven’t got the results yet, but was told that my surgery will be 3 to 4 months, which I assume is due to NHS waiting lists. My symptoms have become worse over the past 3 months which I initially thought were due to anxiety, but I recently I’ve had shortness of breath just from walking up stairs or carry something slightly heavy.

this (bolded) is a key bit of information and the results of that scan will likely feed into the process. If those results are poorer than expected then I'd expect they may bump you up the list a little.

Keep us informed and while I'm not that confident of the interpretations of scan results please post them (and the other details I've mentioned) and someone else may be able to offer better guidance.

@LondonAndy may indeed have some guidance as to how to go about progressing things faster if needed.

Best Wishes

 

[Zara0006]

Hi

I had a look at your bio (the "about" section you've partially filled out), but I didn't see anything about your age or your other condition of health, nor any sort of guide as to how active you have been (like club level cyclist or weight lifter or just sedentary). Next, being an Australian "things are different here" in terms of medical system.

However on to your points these are all factors which bode one way or another into the matrix of working out your urgency and working out what happens.

this (bolded) is a key bit of information and the results of that scan will likely feed into the process. If those results are poorer than expected then I'd expect they may bump you up the list a little.

Keep us informed and while I'm not that confident of the interpretations of scan results please post them (and the other details I've mentioned) and someone else may be able to offer better guidance.

@LondonAndy may indeed have some guidance as to how to go about progressing things faster if needed.

Best Wishes

Thanks Pellicle! Hopefully I will find out more from the results but they aren’t very good at providing them over here (still have no idea about numbers from the echo but was told on the phone that the valve is enlarged and calcified with severe stenosis). I am 35, F, no other medical conditions and was fairly active previously, I did a lot of climbing etc earlier this year with no issues.

I will keep you informed if they provide me with any details!

 

[Zara0006]

Hi Zara and welcome to the forum.

I had my surgery once my aortic stenosis became severe, before the onset of symptoms. I was given a choice whether to proceed with surgery soon, or wait until symptoms started. It was understood that if I decided to wait for symptoms, that they would get me in pretty quickly and not delay.

We've heard a lot of stories about the NHS making symptomatic patients wait significant amounts of time, which is unfortunate. Do you have any other options? Is there a private option that would enable you to get surgery sooner?

Hi Chuck,

Thank you!

We don’t have private insurance here, but I could probably get seen slightly sooner if it’s required as I work for the NHS. I just wasn’t sure about the urgency as it seems the in the US people tend to get booked in for surgery quite rapidly.

 

[pellicle]

I am 35, F, no other medical conditions and was fairly active previously, I did a lot of climbing etc earlier this year with no issues.

ok, so then its not likely that you're unfit ;-)

Do you have (as we do here in Oz) a GP that's getting copied in on the results?

I'd be curious (and others here could be more helpful than me on this matter) what your numbers are.

In Australia I got in "rapidly" for my surgery (#2 and #3) but then I specifically sought a delay on #2 (to finish my exams) and on #3 I had a rather large aneurysm

dunno

 

[pellicle]

Hopefully I will find out more from the results but they aren’t very good at providing them over here

on this point I think its quite patchy in the NHS, as I have a friend who lives up a ways north of you (Manchester) and he gets outstanding service with very quick results sent to him directly.

So I would push for it. Its sad that you have to, but then in Australia I know quite a many don't want to know.

With respect to the urgency of the situation its all dependent on what levels of issue you are seeing. Any signs of ventricular hypertrophy are a sign of surgery being needed soon (although I don't know if soon is measured in weeks or months).

Also, as an aside, here in Oz we have a strange hybrid of old style public system augmented by private health cover. They are basically eroding what you get on the public system and encouraging people over to a private system. Its more complex than that, but I doubt you want a class on that subject ;-)

Best Wishes

 

[Chuck C]

(still have no idea about numbers from the echo but was told on the phone that the valve is enlarged and calcified with severe stenosis)

Is that standard for them to not give test results? Have you requested your echo results?

We don’t have private insurance here, but I could probably get seen slightly sooner if it’s required as I work for the NHS

You have indicated that you have severe AS with symptoms. To the extent possible, I would push to get this done sooner. That being said, I'd estimate that most people don't get surgery until they are symptomatic, so you are not alone in this. Also, you have your young age going for you. As the heart works harder to get enough blood through the narrowed aortic valve, it adapts and enlarges. When surgery happen, this enlarged size will usually reverse, as long as it did not go too far down the adaption path. The good news is that you are young, and the heart of young folks tend to do a lot better at remodeling back to normal once the high-pressure situation is resolved.

I'd expect you will do fine with your young heart going back to normal. But, with symptomatic severe AS, ideally waiting weeks would be better than waiting months.

Best of luck and please keep us posted.

 

[Paleowoman]

Hi Zara - I had surgery when the pressure gradients on my echocardiograms indicated that I was in severe stenosis, but I didn’t have any symptoms. The surgeon said I could have “sudden death” though.

I had Bupa cover from dh’s work, but about half the patients on the cardiac ward I was on in the private hospital were NHS patients as the big NHS hospital nearby had a contract with the private hospital to take their patients who, I guess, were too long on their waiting list for surgery.

Can you contact the cardiac team you are under and tell them the symptoms you are getting ? Also see your GP (if you can!) regarding your symptoms - he/she might be able to put a bit of pressure on the cardiac team ? Maybe your GP also has a report from cardiac team which might have some details of your echo results.

Re the CT angiogram - that’s normally done to check on your coronary arteries because if you had plaque/blockages from atherosclerosis they would do CABG surgery at the same time they replaced your valve. It surely isn’t likely that a 35 year old would have atherosclerosis but it’s a standard test done when a person is going to have valve surgery.

all the best !

 

[MIB]

Hi all,

I’ve been advised that I’ll need AVR for BAV, from the last echo which was in May. I’ve had a CT angiogram a few days ago and haven’t got the results yet, but was told that my surgery will be 3 to 4 months, which I assume is due to NHS waiting lists. My symptoms have become worse over the past 3 months which I initially thought were due to anxiety, but recently I’ve had shortness of breath just from walking up stairs or carry something slightly heavy.

I’m aware that prognosis is not good after symptom onset which is giving me major anxiety while waiting for the surgery. So I think what I’m wanting to know is if anyone else has waited this long to have surgery? It took the hospital a few months to let me know what the results of my echo were, so I assumed I was imagining the symptoms until I was told about the severe stenosis. Any input would be much appreciated!

Mine was less than 10 days. In that time I'd been released from the ER/3 day admit. Next cardiac surgeon assessment appointment. Surgery scheduled. Preop appointment. Then off to surgery.

 

[dornole]

Little different, but I had mitral stenosis and was symptomatic for for probably 2-3 months while I was pregnant - had to sit and rest to get up a flight of stairs, unable to sleep lying flat without coughing and SOB, coughing up bright red blood at the end. No one figured out I had mitral stenosis vs something else, so that delay was in no way a deliberate medical choice.

After an emergency c section to deliver the twins, my symptoms were less acute but I was still short of breath on exertion. Spent about 4 weeks healing from C section and then they did a mitral valve repair at that time which resolved the symptoms. I did not and do not have any enlargement of the left ventricle. Been stable for 21 years more or less. I was 34.

 

[V__]

We don’t have private insurance here, but I could probably get seen slightly sooner if it’s required as I work for the NHS. I just wasn’t sure about the urgency as it seems the in the US people tend to get booked in for surgery quite rapidly.

I think you got quite good feedback here. My guess is that indeed getting the surgery done sooner would be helpful, in the sense of minimizing the risk. Which is likely small to start with.

Re the CT angiogram - that’s normally done to check on your coronary arteries because if you had plaque/blockages from atherosclerosis they would do CABG surgery at the same time they replaced your valve.

My experience (for a different condition) matches what @Paleowoman has said. The coronary artery check with one of the angiograms is a pre-requisite for the surgery, since taking care of the arteries (if needed) minimizes the risk. Unfortunately, for "elective" procedures this check itself can take time to schedule. Once the result is known, I'd imagine they should schedule the surgery. And if you can influence (speed up) this decision, that would be a little bit better.

 

[vitdoc]

Traditionally the decision to proceed with surgery for a stenotic aortic valve was when the extra work placed on the left ventricle caused changes in the ventricular thickness or sometimes other parameters such as a change in the electrocardiogram. It was felt that prior to these changes much of the heart changes were reversible. Symptomatic changes often lagged behind the direct heart changes.
When there is a high gradient other issues may become more worrisome such as sudden ventricular tachycardia which can be life threatening.
When I was being followed way back in 1977 it was noted that I had changes in my EKG. Based on that I had surgery scheduled in about 3 or 4 months since it was not felt that this was a severe issue but it needed attending to. I continued with sports and fainted during a basketball game. I initially didn't mention this to the cardiologist but I ran into him in the hospital I worked and mentioned it. He freaked out and pushed my surgery up to just a few weeks.
So as a general rule if you need surgery and you are symptomatic you should have it relatively soon. In a perfect world say in a few weeks. As you mentioned you are probably waiting due to backups in the system. I would just take it easy i.e. don't play sports and get it done. Maybe you can talk with the medical people and have it pushed up. Good luck probably a few months won't make much difference.

 

[pellicle]

We don’t have private insurance here

I asked a friend and immediately on getting the answer I was a bit ashamed that I didn't just google it. I believe you do

https://www.mytribeinsurance.co.uk/knowledge/average-cost-of-private-health-insurance-uk
Indeed the company that bought out Australias largest health insurer (who I was using) was Bupa.

https://en.wikipedia.org/wiki/Bupa

Bupa's origins and global headquarters are in the United Kingdom. Its main countries of operation are Australia, Spain, the United Kingdom, Chile, Poland, New Zealand, Hong Kong, Turkey, Brazil, Ireland, Mexico and the United States. It also has a presence across Latin America, the Middle East and Asia, including joint ventures in Saudi Arabia and India.​

HTH

 

[pellicle]

I continued with sports and fainted during a basketball game. I initially didn't mention this to the cardiologist but I ran into him in the hospital I worked and mentioned it. He freaked out and pushed my surgery up to just a few weeks.

interestingly I was explicitly advised to not engage in competitive sports and moderate exersize.

(*btw, I didn't "like" the bit where you passed out)

 

[Paleowoman]

We don’t have private insurance here,

I asked a friend and immediately on getting the answer I was a bit ashamed that I didn't just google it. I believe you do

We certainly do have private medical insurance in the UK, loads of people use it, and quite a few companies take it out for their employees, but they won't cover pre-existing conditions so I think even if Zara took out private insurance she wouldn't be able to claim for this problem.

 

[tom in MO]

I had the same condition but was asymptomatic. When the echo showed me as severe, I was told not to wait for symptoms and get the surgery ASAP. When asked what that met my cardio said 2 months. He said "You don't want to suffer the condition known as sudden death." A week later I had my first symptom, a good dizzy spell.

With a stenotic BAV the valve gradually gets worse but then can get worse faster. Your angiogram should provide a good look to your healthcare team. Press for a surgery date. Ask what symptoms require immediate treatment. I went from severe to operating table in ~2 1/2 months. After removal, the surgeon said my valve was in bad shape.

Unfortunately several of our brother and sister forum members in the UK have had to wait for surgery due to inadequate capacity of the NHS. To the extend possible, you need to be an advocate for your health care.

 

[Jack Julles Jackson]

Hi all,

I’ve been advised that I’ll need AVR for BAV, from the last echo which was in May. I’ve had a CT angiogram a few days ago and haven’t got the results yet, but was told that my surgery will be 3 to 4 months, which I assume is due to NHS waiting lists. My symptoms have become worse over the past 3 months which I initially thought were due to anxiety, but recently I’ve had shortness of breath just from walking up stairs or carry something slightly heavy.

I’m aware that prognosis is not good after symptom onset which is giving me major anxiety while waiting for the surgery. So I think what I’m wanting to know is if anyone else has waited this long to have surgery? It took the hospital a few months to let me know what the results of my echo were, so I assumed I was imagining the symptoms until I was told about the severe stenosis. Any input would be much appreciated!

Ive been advised in July and today my surgery still not scheduled.

Doc wants an angio TC, and looks like my health care need mor burocracy for that exam than for the surgery. Brazil is crazy sometimes. But I saw three docs who sayd I dont need to rush. I cant just let it go like if nothing is happening, but I have time to do all the procedures on the time. Even with burocracy.

On the first weeks, I got that anxious synthoms too. After some eletros, and after repeat an ECO, docs sayid its anxiety and I run back to psychoterepy. Its compreesive to get anxious before an AVR. Now, with psychotherapy, besides not doing hard exercises I feel nothing.

But, remember. Anxiety is an exclusion diagonostic. We discard ANY OTHER CONDITIONS before say thats anxiety. Talk to your doc about that and, if he agrees thats anxiety get some therapy.

 

[LondonAndy]

Welcome, @Zara0006 ! As you can tell by my profile name, another Brit here (Anyone from London, Ontario: shhhh!)

I had shortness of breath suddenly start in late 2013, at the age of 48. It was almost like someone flicked a switch as I was walking down the street: one minute I was walking fine, the next I was gasping for air. Rest a few minutes, and then I could walk another 200 yards before the next flick of the switch.

I was living in north London at the time and had a series of tests, stretched out over several months. The definitive test seemed to be an ultrasound, carried out at the maternity unit of my local hospital! The technician briefly told me the results at the end of the scan. However, a couple of months later I still hadn't heard anything back officially, and ironically earlier this day I had posted a letter to the hospital pushing for results of the ultrasound and next steps; then I had what I assumed was a heart attack whilst sitting quietly at home, not exerting or anything. So I dialled 999 for an ambulance.

A paramedic arrived by motorbike to start diagnosis, and said I had NOT had a heart attack. In fact later it was described as a "cardiac event" as no damage had been caused to the heart. I'm sad to say it, but I think calling 999 was the thing that saved my life - no more waiting for diagnostic test results, all the necessary tests were done whilst in A & E, and I was transferred to the London Heart Hospital (which has since closed) for surgery a few days later. When they wanted to do an MRI scan they re-opened a unit within the building that had been taken out of commission, as I was considered too high a risk to be moved to another hospital for a scan there.

Note, however, that it was my aortic valve that was blocked, so not sure how much difference that makes. Also, the surgeon speculated that the cause was having been an insulin dependent diabetic for 20+ years, on a cholesterol tablet - this combination is now thought to cause stenosis.

Not sure if any of that helps. Happy to chat more if wanted. Best wishes for your op.

 

[Zara0006]

We certainly do have private medical insurance in the UK, loads of people use it, and quite a few companies take it out for their employees, but they won't cover pre-existing conditions so I think even if Zara took out private insurance she wouldn't be able to claim for this problem.

Yes thank you this is what I meant as opposed to the US where insurance is essential for treatment. I work for the NHS so I’m unable to obtain private insurance via an employer, but they probably wouldn’t cover you for pre-existing conditions anyway.