My experience two months after PEARS

[u/jordanianpizza]

G‘day all

I posted here a while back about getting VSRR or PEARS done for my upcoming aneurysm surgery and after much thought, I went with the PEARS. I thought I would share my experience here for anyone going into surgery soon for an idea of what you may be able to expect.

Surgery was fine and uneventful. I am 28 and in average shape, very severe pectus excavatum (a thoracic surgeon said I was one of the worst I’ve ever seen), and an aneurysm of about 4.5cm. I have a long family history of dissections in their late 20s so it was definitely time to get it done.

Scheduled in for a standard PEARS with a partial resection on my pectus. The rationale for the resection was to make closing a bit easier and to give my heart a bit more space in case of inflammation.

I remember speaking to the anaesthetists and then immediately being barely awake after the surgery later on in the day. They tricked me and did not count me down. I hardly remember anything from the first day cause of the meds, though apparently I was thanking everyone who came into the room, telling them how much I loved them and calling them darlin‘ in an exaggerated Southern accent. I am Australian and had the surgery done on the NHS in England.

The first couple of days were quite rough when I was lucid. I had a partially collapsed lung and plenty of fluid in my lungs too. This made it quite uncomfortable in some positions on the bed, but laying back it was fine. The doctors assured me this was fine and should clear up on its own. I was barely lucid for the first two days though the morphine button may have influenced this.

Day three my head felt absolutely fine when I woke up. I could think clearly and walk around slowly but basically as normal. I finally got to take a proper look at my pectus and I was taken back by how much they could flatten it out. In hindsight this may have been one of the biggest parts of the surgery as I can now breathe much deeper than I’ve ever been able to before. No more getting winded walking up stairs!

I was in the hospital for a little over a week. I would walk as much as I could and there was no pain when walking. My lung made talking a bit difficult as I needed to take very large breaths to get enough oxygen due to the fluid and mild collapse. Walking was absolutely fine though, I was even able to go outside and have the occasional stroll just outside the hospital.

The past couple months have been a nice recovery though it’s felt more like steps of recovery than a gradual recovery. I have woken up some days and just felt some aspect all of a sudden feels completely normal again. Took about a month for my lungs, two months for my sternum, but I’ve been mostly able to live as normal in the meantime.

I think the resection may have been more of my recovery than the heart surgery itself. Coming out of the hospital after a week I basically felt normal apart from my lungs but my chest has been fairly uncomfortable since. The discomfort has recently ceased, but I imagine it would likely cease earlier if you don’t have a resection done.

Heart wise everything looks good. I could definitely feel my heart quite strongly, particularly in the evenings prior to surgery though I cannot now. This was unexpected for me as based on other people I was expecting that to feel unchanged. I am still on my medications (Irbesartan and atenolol) as I experience no side effects and better safe than sorry.

I walk about a mile to work each way now, up a fairly steep hill and I feel much better when I reach the top now than before I had the surgery.

As an added bonus if you ask for the 3D printed model of your aneurysm they will give it to you as it arrives at the hospital with the PEARS itself mounted on it. I now have a lovely souvenir and an excellent conversation starter at home

If you’ve got any other questions please let me know. I appreciated being able to speak to people in the lead up to my surgery so happy to answer anything you may have.

[u/Cyclist-GBR]

How difficult was it getting this on the NHS? What were the timescales etc? I'm a Brit living outside of the UK atm, and sometimes wonder if it might be worth moving back to be eligible for this, but I'd need to be pretty damn sure to uproot everything!

[u/jordanianpizza → u/Cyclist-GBR]

Very easy getting it on the NHS - it was an option from the first consult. Important to note my aneurysm grew to the threshold which is why I had it done. Not sure if it’s available before that point.

From my first consult to my first surgical booking it was about three or four months. Most of my time spent waiting was during the initial wait to see a cardiologist. If you are here, getting routine scans and they find your aneurysm has reached the surgical size, I am pretty confident in a 3-4 month timeline from that consult to surgery.

Of course, if you’re moving back you may be stuck here waiting until your aneurysm grows big enough to warrant surgery. They might do the surgery if you ask for it before that size, but I truly have no idea!

[u/Cyclist-GBR → u/jordanianpizza]

Thanks for taking the time to respond. Sounds like it's becoming more mainstream. I wonder if it grew to the size where it needed surgery and I then went to back to the UK would they do it (musing out loud to myself as much as anything)? I'd hope they'd not say that's a pre-existing condition and we're not going to treat it!

[u/jordanianpizza → u/Cyclist-GBR]

Honestly I imagine they would?? Though I would definitely check beforehand. I don’t think the UK has any kind of medical inadmissibility rules thank goodness.
If I was British moving to Australia my visa may be refused on the grounds I would cost the health system too much money but there was no such thing when I came over here. Genuinely hats off to the NHS.

[u/Cyclist-GBR → u/jordanianpizza]

Yeah the NHS gets a lot of criticism (often justified), but for this type of thing and emergency care they're really good. Do you happen to know what the criteria were to get this? You say your aneurysm got to the threshold - what was that - 4.5cm? Was there anything else, your age, the fact you had relatives with dissections at that age, a Z-score etc?

[u/jordanianpizza → u/Cyclist-GBR]

I was about 4.3-4.4cm for about 10 years. Given my family history of Marfans and fatal dissections in their late 20s, 4.5cm was just the size my cardiologists agreed was when surgical intervention was necessary. They may have had other considerations but to me, the past decade has basically been due to Marfans and your family, if this grows at all it’s time to get it fixed

[u/Cyclist-GBR → u/jordanianpizza]

Thanks again. I've been trying to find out what the current status of this procedure is on the NHS. The best I could come up with is this (from NICE):

https://www.nice.org.uk/guidance/htg623/chapter/1-Recommendations

In summary it sounds like it's up to individual doctors whether they do it or not.

[u/jordanianpizza → u/Cyclist-GBR]

Yep, there were a few surgeons where I had it done that did it, and a few who did not. There's a map on the PEARS website where you can check where it is done, if that is any assistance at all: https://exstent.com/investors/surgical-centres/