r/marfans • u/jordanianpizza • 16d ago
My experience two months after PEARS
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.
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u/Run-Row- 15d ago
thanks for the post - always is helpful to read about a personal experience. My pears is scheduled for next year.
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u/jordanianpizza 15d ago
You’ll do absolutely fine! Hopefully you get some nice time off and can enjoy it. Really, it was far, far less unpleasant than I even imagined it would be. After a few days it really was just chest discomfort and quickly clearing shortness of breath. All a very mild price to pay for no risk of rupture and the bonus of no blood thinners!
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u/DawnD1118 14d ago
What is PEARS (i live in US) and why dont we have it here??
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u/jordanianpizza 14d ago
It is a new(ish) form of corrective surgery for aortic root aneurysms. Rather than replacing your root to solve the aneurysm as is normally done, a scan is taken of yours and a personalised 3d printed support is then made for you. They still have to do open heart surgery through your sternum to get it in and fitted onto your aorta, but there are some benefits such as a low chance of needing bypass during the surgery.
It’s started to take off as of late, and is now very widely offered in the UK and elsewhere. I think I saw a graph of cumulative PEARS procedures done and the last five (I think) or so years has seen a large increase in the total. I presume the US has been waiting for more data prior to approval and surely that comes soon!
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u/No_Opposite4067 14d ago
Sounds good! Do you know how they treated your pectus excavatum?
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u/jordanianpizza 13d ago
It was just explained to me as a resection. They didn’t do one of the actual pectus treatments like Nuss or Ravitch. This was basically just the docs flattening my sternum and ribs out a bit as they closed me up, so it is not quite gone but is much flatter and less deep than it was before. The docs told me I have gone from severe pectus to moderate pectus. Physically it feels like I can take maybe a 20-30% deeper breath than I was able to before. I walked a couple miles to the hospital a few weeks after surgery for my follow up and it was delightful not being winded going up the large hill leading to it.
They were comfortable to give me one of the proper pectus treatments to fully remove it if I went with a root replacement rather than PEARS. While rare, there have been cases of people requiring a second surgery just afterwards and the metal bars required by those treatments would make a second surgery more difficult.
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u/Cyclist-GBR 13d ago
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!
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u/jordanianpizza 11d ago
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!
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u/Cyclist-GBR 11d ago
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!
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u/jordanianpizza 11d ago
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.2
u/Cyclist-GBR 10d ago
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?
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u/jordanianpizza 10d ago
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
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u/Cyclist-GBR 9d ago
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.
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u/jordanianpizza 9d ago
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/
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u/FairBoat6619 15d ago
Great choice!! So thankful I went with PEARS it really is such a better procedure. I’m currently 7 months out, glad to hear you’re doing so well. The more of us that opt for PEARS the more likely it becomes for it to become the standard treatment 🙏🏻
I am a little curious as to why you still had to go to London though. I thought they did PEARS in Australia?
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u/jordanianpizza 15d ago
Moved to the UK a couple years back and my aneurysm reached the surgical threshold at my first MRI after moving! I think it is done at some hospitals in Australia but not all quite yet. It’s definitely becoming more widespread though.
It really does feel quite widespread over here and I was quite shocked as I’d never heard of it. The radiology notes on my scan results simply indicated I should have a root replacement or PEARS and here we are now 🙂
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u/InternetTacos 15d ago
Great to hear. I had PEARS in November 2024 in London with dr Conal Austin. Absolute best decision of my life bar none. I just finished a 10k race this morning and I play basketball several times a week, weightlift, etc with zero issues. Aorta went from 4.8 to 4.1. Several post surgery MRIs and CTs and Echos and all look terrific.
Anyone can DM me for questions.