Upcoming annual.

[themalteser]

Hello to everyone. Another year has passed, and so I have another check up in a few hours time! I'm okay, just a bit nervous because next month I'm emigrating for a year or so the Netherlands. I'm hoping that everything is stable so I can start focusing on my move, and not worry about this.

Please, wish me luck!

 

[pellicle]

Best of British luck to you

 

[Paleowoman]

Wishing you all the best !

 

[epstns]

Wishing you nothing but good luck and good times, malteser. These things have a way of weighing our minds down, but deep inside we often know if things are OK or not. It doesn't sound like your inner mind is expecting any troubles, so I'm betting that there are none.

Time to give in to the excitement of the move!

 

[themalteser]

Oh Lord... its time!! I cannot believe it. Couldn't be at the worst of the worst time!
My cardiologist said that there had been a minimal change, he stated that last year it was 46mm and it's now 47mm. He said that at 47mm, he thinks that it's best if I got it over and done. He like me to go for a PEARS procedure.

Now, I am nervous, anxious! I'm also gutted. My plans to move to the Netherlands have to end! I'm gutted. The Netherlands have excellent medical care, but my employer will not give me the time off!

Not sure how to deal with this at the moment, so I'm going to have some time to think...

 

[user 16827]

Wishing you the very best Malteser,

Hearing "now is the time" is very stressful, although we know it's coming it doesn't make it any easier.

I only found this site a few years after my OHS , if like you i knew about it beforehand then the experience & great advice
on here would of given me comfort, i hope it offers you much comfort too.

all the very best with your surgery

 

[ClickityClack]

It is a shock isn't it? You've been told it would happen eventually but there was always a part of you that didn't believe it.

You'll be okay. I wish you the best.

The PEARS procedure is still very new. If it were me, I'd be very cautious.

I actually asked my surgeon if something like PEARS could be done. He told me that dissections aren't ruptures. Evidently with dissection the inner wall of the aorta essentially delaminates and cause a disruption of the blood flow that can lead to some nasty complications even if they don't lead to rupture. Think of a tree laying half in a river. Eventually it'll get swept downstream but until it does, it creates an eddy and catches debris.

 

[honeybunny]

I'm so sorry this has upset your plans to move. OTOH, it's probably good to have it fixed before you hit the road so to speak. Sending positive thoughts your way.

 

[themalteser]

Thank you so much all. As always, very helpful.

Below is a bit of a vent. I hope you do not mind.

I had some time to think by staying awake all night! I am still moving to the Netherlands; I don't see the point in putting my life and my family life on-hold just because of a glitch! The Dutch have excellent care system, and I am sure that I will be looked after.

My aorta remained 4.7cm since last year, so what annoys me is that why will my cardiologist suddenly decide that I need surgery. I've asked him the question last year, and he responded that I'm nowhere near! So why now. My valve has a mild leak; nothing has changed... With the NHS I only have a 10-minute window to talk to him, so I booked a private appointment so that the conversation will be under my terms.

I think that what happened is that there is a surgeon who started operating PEARS procedure, and he had his second patient last month. He is an excellent doctor. I think, however, that the doctor needs more Guinea pigs!

I don't deny that at 4.7cm I should only ignore it, but I don't believe that my appointment yesterday was helpful.

It's been 4.7cm for many years. The measurements always differed between 4.5cm-4.7cm by echo. I remember having a CT scan back in 2009, and it said 4.7cm, but the MRI said 4.4cm, so why on earth should I jump to having surgery now and stop all my plans.

Again, thank you all for reading.
​​​​​​​

 

[user 16827]

Venting is good,

Pity you lost sleep but it sounds like something positive has come from it, the private appt is a good idea
something like this needs your questions answered.

From what i have read & understand regarding PEARS its early days for the procedure...

these decisions are never easy

 

[Paleowoman]

Hi Malteaser - when I read your post I thought it's gone up by 1mm and your cardiologist suddenly wants you to have surgery - 1mm ! As you say, the echo can be between 4.5 and 4.7 so 1mm would surely be within the normal variability of echo results, considering too that echos can be operator dependent. That's a very good idea to see the cardiologist privately.

 

[themalteser]

Not great is it? I have the appointment tomorrow. It's going to cost me money, but I need to clarify a few things. I don't want to suddenly jump into surgery when it been relatively stable for now. I may be arguing against the benefit of preventing an untoward event, but the way I see it is that the number remained the same for quite some time, It will be nice if surgery can wait. If the reading is suddenly 49mm, or my valve starts leaking rapidly, then obviously, I won't even be thinking about it.

In 2015, I emailed my cardiologist, asking him if I can benefit from PEARS (Again 47mm root). He said, that my MRI and echo suggest that I am not nearly at the level where a PEARS (or any other intervention is needed ). Your aorta has been quite stable for several years and may not change for a long time. The MRI in 2015 showed that the root was 42 x 45mm. Echo showed 46/47. So maybe a mm change, but echo is not exact.

Last year, the measurement was again, 47mm and my cardiologist said this: "..All findings are quite reassuring and I don't think there will be an indication for surgery in the near future."

I am going to ask questions like:
1. Why now? have criteria changed since last year?
2. Can I hold off surgery for another year or two (unless it enlarges of course)? So I can settle down abroad.
3. What other options do I have?

 

[Agian]

Why don't you make an appointment to see a surgeon, or even get a second opinion from another cardiologist? This guy sounds like a pillock.

 

[themalteser]

Why don't you make an appointment to see a surgeon, or even get a second opinion from another cardiologist? This guy sounds like a pillock.

I called a surgeon in the NL. He wants my echo readings, etc. to evaluate. Because its the NHS, however, I have to jump a lot of hoops before I can get the reading!

 

[DebW]

I was advised by my cardiologist that they like to do surgery when the aneurysm is 4.7 to 5.2cm. Mine is 5.7cm and I have not had surgery yet. Why? My understanding is that the waiting time is lengthy (I was diagnosed in March this year with bicuspid valve and 5.7cm aneurysm), and because my heart function is good, there are others who have more urgent need of surgery.

Perhaps your heart function has become an issue, and that's why they are recommending surgery? This may not even be an issue with the valve.

If your heart health is endangered, I would certainly do the surgery.

 

[Paleowoman]

I called a surgeon in the NL. He wants my echo readings, etc. to evaluate. Because its the NHS, however, I have to jump a lot of hoops before I can get the reading!

When you see your cardiologist tomorrow ask him for copies of the echo readings - he will be able to use a photocopier right there and then to give you copies - believe me I have had this. Anyway, even under the NHS you can request copies of echo reports or any reports, but it's a lot easier to get when you see a doctor privately.

 

[themalteser]

Thank you, Paleo; I asked my cardiologist, and he said that he would actually record the images on his phone so that I will be able to send it the specialist in Holland.

Today, I had some more time with my cardiologist. Basically, because of the PEARS procedure, the NHS guidelines for bicuspid aorta pathy have changed, in that, if the valve is working well, and there is evidence of aortic dilation, then they can recommend PEARS procedure, to try and prevent Bentall. When I say, prevent' I don't mean it's a bad thing, I mean it's more complicated; so they try to get this done first.

My measurements remained relatively the same year-on-year. I was 47mm last year, and 47mm the year before. I will be holding off PEARS for now until I settle in the Netherlands. I don't see the point in jumping to major surgery if the measurements remain stable.

My cardiologist is particularly worried that my mild regurgitation may increase significantly, so he would like to see me in 6-months time. Now, I've read quite a bit of literature, and usually, based on medical evidence, the regurgitation does not go from mild to severe in a short period. However, I stand corrected.

Final point. As many here said, PEARS is a relatively new procedure, but promising. It's certainly a good option for me, and if my aorta has increased by 1mm, I will start the process, but since there has been no change, I may as well leave things as they are for now and then, I will start thinking about surgery when I settle down in the Netherlands.

Also, maybe PEARS costs less than Bentall (Bypass, ongoing Warfarin, etc. etc.) so it makes sense for the NHS to push for PEARS first.

Your thoughts are much appreciated.

Thank you all in advance.

 

[themalteser]

One last thing, my cardiologist ordered a genetic test for me. Has anyone done that?

 

[mom2angel]

I am glad you got to meet with a doctor and get your questions answered. That has to give you some peace of mind. Best of luck on your move. Take care of that heart of yours and go in when things get worse.

 

[valdab]

Sorry - duplicate below. Couldn't delete!

Hi malteser - our situations are quite similar. My measurements vary between 46mm and 47mm. I see Prof Pepper in London who overseas PEARS. I have also communicated with Tal Goldsworthy who agreed with Prof Pepper's assessment.
The Prof's view is that as I have no other issues (regurgitation, stenosis) it is best to wait until the valve is definitely increasing in size. My previous consultant also didn't want to operate as the measurement remained steady. Just another opinion for you.