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Experiences of PFO Closure Operation

A patent foramen ovale, or PFO for short, is a hole between the two receiving chambers (atria) of the heart and is found in around 25% of the population. Ordinarily it causes no problem, but in some people, and for reasons that are not well understood, it can allow a blood clot formed in the lower body veins access to the left side of the heart which connects with the brain. These blood clots are normally captured by the lungs but a PFO can allow them to pass from the right to the left side of the heart during certain circumstances and from there they can pass directly into the brain, blocking an important artery and causing a stroke.

For many of the people that we support at Different Strokes, careful investigations by their stroke doctor have concluded that the only potential cause for their stroke was a PFO. Cardiologists are able to close these holes with a low-risk keyhole procedure. We are often asked about the procedure, so we asked our community to share their experiences. Please note that as with all things stroke, no experience is the exact same. We hope this gives a good overview of different experiences and outcomes.

Lisa

Lisa's Experience

“Initially when I was told that I had a PFO, I was scared and worried that I could have another stroke. The Stroke Consultant at the time mentioned that it was very rare for this outcome and he had not seen many people in our local hospital with a PFO, so that made me worry even more.

Leading up to the PFO operation, my husband and I were concerned about the pending operation and the side effects that could come with the operation. The operation took place in a London hospital (pre COVID-19) a good 40 miles from my house. On the day of the operation I was incredibly nervous.  This obviously showed as the consultant calmed me down.

The procedure itself was so quick; I went to theatre and before I knew it I was on the ward again. I received anaesthetic before the operation so I only remember the team talking to me in theatre after I woke up. They were telling me it was a success and that I should expect to be bruised for some time due to the Clopidigrel. When I woke I could hear my wedding dance song playing on the radio, so I was a bit confused, then I came to with a smile.

The recovery itself was seamless. I had to have a month off of work, as I was a Healthcare Assistant, and it was advised not to walk a lot after. The bruising stayed for a little while, as did the discomfort. For me it was the fatigue that kicked in after the operation, which I was told is normal.

I do not have any issues with the PFO now, I have been to the hospital several times to repeat the echo bubble test, to be informed there are not any bubbles and that having the surgery has now reduced my risk of having another stroke.

I would certainly say that it is worth having the operation, and I need not have worried as much as I did. The consultant had performed seven operations on the same day as me. This made me realise how many people in the UK had PFOs.”

Keriann (2)

Kerriann’s Experience:

“I found out I had the PFO in November 2020 but didn’t have closure until July 2021 so it was a long eight month wait worrying and reading horror stories online.

I had to go for a COVID PCR test three days before the procedure itself and also had to isolate.

The day of surgery came and I was supposed to be at the hospital at 7.30am. I got a call from them saying to come in at 11am as they were already running behind. My husband dropped me off and I walked to the ward a little nervous as COVID meant no one could be with me. I had some bloods taken and also had to take a crotch swab (lovely I know)!

It got to around 12pm and I was told that they were running behind and that I could go home and book in another day.

There was no way I was going to do all that again so I chose to wait ….. and wait. At 4.30pm the surgeon finally came to see me saying it was my turn next!

I was gowned up with my fabulously paper pants and wheeled down to the pre theatre room. I was given oxygen and a canula was put in with the sleepy juice.

Next thing I know I wake up with the worst migraine I’ve had in my life. I was crying my eyes out. They had to turn the lights down in recovery and get me a wet, cold compress for my forehead. I was wheeled round to the ward where my migraine continued to squeeze my head. By this time it was about 7.30pm and I was exhausted. I felt like utter rubbish. No pain in incision site though.

My throat was awful, I had a TOE whilst under so they could pin point the exact location and size of the PFO. After about an hour I was allowed to sit up and have a sip of water – this was very welcome as my mouth felt like the Sahara!! I had my dinner at about 8.30pm – Mac n cheese if I remember rightly. The surgeon came round to see me and did a quick echo whilst I was in bed to make sure the device was in the right place.

After this it was about 9.30pm and I was allowed to get out of bed and use the toilet – thank goodness as I really didn’t want to use a bed pan !!

I got out of my gown and put my PJs on (note to people about to have the closure – don’t bother with pants).

My canula was taken out and my husband came to get me about 10.30pm. I went straight to bed as soon as I got in but had TONS of heart flutters, which scared the crap out of me. I was reassured by the surgeon that it was normal and was to expect them though. 

I’m not going to lie. My recovery was rough. Every time I tried to get up I felt like all my energy was falling to my feet and was so dizzy and faint. This lasted for a good week. 

My tips for recovery are:

  • Listen to your body.
  • Rest, rest, rest!
  • Make sure you have a week booked off work if you can.
  • Try and organise some help if you have children.
  • Batch cook some meals the week or so before your surgery – trust me you will thank yourself.
  • A week to recharge and to heal.
  • After all ……. This is heart surgery ❤️

My tips for the hospital are:

  • Shave before you go in (the lady in the cubicle opposite me had to be shaved by the nurse and was very embarrassed).
  • Don’t take loads of stuff in a bag.  I took too much and didn’t use any of it. The only things I used were my phone and headphones.
  • Have underwear ready for a few weeks.  For ladies the boy style shorts (or just none) will do.  You can’t have elastic rubbing on the incision site.
  • If you have long hair, French braid it before you go in.

As for me now. Unfortunately I am suffering with Atrial Fibrillation and am awaiting results from a 2 day heart recorder I had to wear. We all react differently.

If you have a nickle allergy or sensitivity ask your consultant about the Gore device as it’s coated with mesh rather than metal directly against your heart tissue.”

Andy

Andy’s Experience:

“Shortly after my stroke I had a Transcranial Doppler which is a simple way of indicating a PFO and was told that I had one (it was some of the best results they had heard).  However, Echocardiograms didn’t show it. Thankfully I had a persistent Stroke Consultant who arranged a Transoesophageal Echo that identified the PFO and ASD (Atrial Septal Defect) and also identified another heart defect.

I was keen to get the PFO closure because it would significantly reduce my risk of another stroke.

I had the operation as a day surgery.  The consultant had spoken to me a couple of times prior to the procedure and spoke to me on the day both before and after the op. After I was discharged, I felt fine, there was a bruise on my groin, but otherwise no obvious signs of heart surgery.

 I had to take things easy for a week or two, but never felt up nor down after the op.

I get an annual heart MOT, which checks the closure and for other heart defects, other than that, I feel fine (stroke deficits notwithstanding).

If you are facing this operation my advice is – don’t worry about it.  It’s a straightforward procedure and the benefits are worth it.”

Claire’s Experience:

“I was 45 when I had my stroke – completely out of the blue.  They’d said it was most likely due to my crazy high cholesterol levels which they thought were genetically caused along with a hole in my heart. I Googled it as I wondered whether it could explain why exercise had always made me feel so awful – like I was being suffocated.  I found something that suggested in some cases, a PFO could cause issues when exercising. I think then I just knew.  I saw the bubbles go through the hole when they did the test and I wasn’t surprised. When I got home I felt really upset.  I think because I had always been made to feel like I was lazy when I struggled with physical exercise.  I’d always liked sport and wanted to be good at it.  It just felt like such a waste to get to 45 and only then find out.

I work in a school and the operation was scheduled for September 7th, so my main focus was making sure everything was in place so everything would run smoothly in my absence. I had a COVID test and a few other tests but the worst thing was having to wash in antimicrobial skin cleaner several times before the procedure – it wrecked my hair! It was a beautiful sunny morning when I arrived at the hospital. I felt fine and was looking forward to getting it done as I was curious to see whether I’d notice a difference afterwards.

The hospital staff were lovely and I honestly felt really calm. I remember laughing at the irony when they told me there was a very small chance the procedure could cause another stroke. I made a few work calls whilst I was waiting to go down, which kept me busy. I remember thinking how funny it was that all the staff kept trying to reassure me as I really felt fine about it all and found myself reassuring them that it was all OK.  I’ve had lots of operations on my shoulders so another op seemed like no big deal, especially having got through the stroke.  

Everyone was so kind in the theatre and I remember chatting to a nurse about my stroke. Off I went to sleep, feeling fine. Then I woke up and wasn’t fine.

Recovery for me was pretty scary. I remember a panic. I heard nurses worriedly talking about extremely low heart rate and bradycardia. I was in a lot of pain and eventually realised they were talking about me. The surgeon appeared and asked what the problem was. I was so groggy I didn’t know what to do so I just let them get on with it. I can’t remember what they did but eventually I was taken back to the ward. I remember the nurses being really worried as it was late and they didn’t know what had happened to me. They said they’d been trying to call and find out as I’d been several hours longer than expected. It took several hours for my heart to sort itself out but it did and finally I got to go home.

That night, I had loads of palpitations which I’d been warned about and they were worse if I laid flat so I had an uncomfortable night propped up in bed. The next day, to my surprise, I felt OK. I was able to get showered, carefully avoiding the wound, dressed and spent time in the garden reading. The wound wasn’t too sore and paracetamol seemed to keep the pain at bay. 

The next day I’d planned to attend a virtual meeting for work.  It was a child protection meeting so I really felt like I needed to attend even though I’d delegated to a colleague just in case. It was a good job I had as just before the meeting I felt really strange. I had a silent migraine and a feeling of pressure in my head. I had semi-circles of stars in my right eye. Looking back, the symptoms were so similar to my first stroke, I don’t know why I didn’t realise what was happening. I could still move everything but I was so dizzy. The dizziness went on for days.  Eventually I felt so awful I went to A&E. It was busy and I got the sense that no-one quite realised how hard it was for me to walk. They mentioned the possibility of a brain bleed so I had a CT but that didn’t show anything. They had no idea what was causing my symptoms, so after 7 hours I was sent home.  It took several more weeks before I started to feel normal.  I was having trouble with word-finding and also struggled to read some words.

I went back to work on reduced hours but pushed myself to get back to normal hours within a week as I was fed up with it all.  At my follow up appointment in December I wasn’t surprised when my surgeon said he felt I had most likely suffered another stroke following the procedure.  He said he’d done over 500 of these and I was only the second patient it had happened to. He said if it was a clot again, it would only have shown on an MRI – same as the first stroke I had. 

I’m still suffering the after effects of both strokes.  My word finding is still problematic and I am tired.  However, for the first time ever, I can exercise without feeling like I’m dying!  During lockdown we got an exercise bike.  I was determined to have a go once my heart was fixed. I was terrified of losing my balance and falling off, but so far so good. The difference the closure has made is incredible. I can now exercise without this awful feeling of not having enough oxygen in my body. I think it was bad luck that I had another stroke after the procedure, but to be honest I’d rather have had the operation than not.  It’s early days and I’m pretty determined (some might say bloody-minded and stubborn) so I’m sure I’ll be fine.  My surgeon has said exercise and healthy eating is the way forward so that’s what I’m doing.  He’d like me to avoid stress.

My advice to others would be to understand that there are risks, but also that there are benefits.  The op itself isn’t too bad.  Oh, and get some hair treatment oil if they make you wash in good skin cleanser!”

Ruth

Ruth’s Experience:

“My PFO was seen on a bubble echo. I was actually pleased that a probable cause of my stroke had been identified. Fortunately, recent campaigns meant that I would be able to have it closed on the NHS and did not have to go private or fight to qualify. 

The pandemic meant that my procedure was delayed and postponed twice.  This period of uncertainty was stressful.  The procedure was done at Barts.  I was unable to have anyone with me due to the pandemic, but staff were lovely and I was in a small bay with other stroke survivors having the same procedure. 

I was awake for the procedure, had a local anaesthetic in my groin and was able to watch what was happening on a screen. As a nurse myself I found it really interesting. The doctor talked to me throughout. I had a headache and a few palpitations, and it’s certainly a strange sensation when they ‘tug’ on the device to ensure it is in position. I believe from start to finish it took about 30 minutes. 

Back on the bay they checked me regularly.  They saw I was bleeding from my incision site and a nurse had to apply a lot of pressure to stop the bleeding.  I was kept lying flat for a couple of hours and discharged that evening.  

I had a few days off work and had an impressive bruise later that week.  Six months later a repeat bubble echo has confirmed that my device has closed my hole effectively

A positive experience for me which has given me peace of mind. “

Alexandria’s Experience:

Alexandria

“I was sure I didn’t have a PFO -100% positive. So when a doctor said there was a large hole it felt like a gut punch…. my head started spiralling with what this meant. Now I know this means the investigations stop and that I needed to have an operation. I was reassured it was a small procedure and 100% my choice.

I was anxious in the run up to the operation but the Different Strokes group was very reassuring but, I still felt dread. I had a phone consultation with the hospital prior and the doctor understood my worries.

The operation happened amidst COVID-19 so I had to go alone. Anxiety was high when I walked in. The nurses were lovely. Doctors came and threw lots of medical jargon at me. I waited four hours until I was walked down.

 I sat in a hall way where lots of cardiologists walked around. I was taken into the operating theatre and laid down, I was told briefly what would happen and then I was put under general anaesthetic. I had mentioned I was so anxious I would like it done while under. 

Afterwards, I had bruising on my leg. The next day at home I was so tired. Stroke fatigue was rife and it took a few days to get back to my normal self ..

I feel fine now – I can feel what feels like a like a bruise when I move my leg in a certain way

My advice would be to tell your consultant all your worries… They really know how to get you calm. Be honest how you feel. Of course it sounds daunting but these guys do it all the time.”

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