About two months ago I had a stroke, not the most mahoosive one thankfully, and two months down the line, I’m almost completely recovered, back on the bike etc so I was very lucky. Since then I’ve had numerous tests to find out what may have caused a stroke in a 40 year old fit healthy non-smoker with no family history of strokes.

On Wednesday I had a bubble echocardiogram that confirmed I have a big hole in my heart. The reason I’m opening this up to the floor is that the Dr performing the echo said that the hole almost certainly would have caused the stroke but then went on to say that they may well not fix it due to politics within the NHS. Does anyone have any experience of this or a similar situation that may shed some light on the subject? I’m currently waiting on a call from my Consultant to discuss my next steps. Thanks!

No idea on teh NHS politics, but i feel your pain. diagnosed with a Bicuspid Aortic valve and enlarged Aorta 2-3 years ago in my mid 30’s. been walking round with a ticking bomb in my chest ever since waiting on the NHS.

If you can, investigate how much a private fix would be, it may not be as much as you are thinking. Pretty sure they can do holes in the heart keyhole nowadays (feel free to correct me)

Gary Cherone from Extreme.

I’m really sorry about that.

? tastless, but funny as f***

ticking bomb in my chest

I know that it can feel like that daver 27, but my bicuspid aortic valve lasted 50 years with annual check-ups. When it did need replacing with a mechanical one the NHS had me under the knife within a week – if it really needs doing they can move surprisingly quickly.

On the other hand if it isn’t urgent they might leave you hanging around on the waiting list for years……………

You might want to check out the somerville foundation, they have a fairly active facebook page etc…..

from what I vaguely remember from scuba diving health training, a PFO (if it is that) isn’t entirely uncommon, but if I had one I would be making a bloody nuisance of myself with the consultants to get them to sort it, I would be pointing out that a second stroke to a patient on their register that they ummed and ahhed about wouldn’t be a good outcome for anyone…

good luck, hope you get well soon

I know number of people from the dive club I was once in who had the procedure done pro-activley as it increases the chances of getting the bends. This all occured after a number of people got tested for the condition after one chap got a bends hit caused by a hole in the heart. Not sure what exactly is involved in the procedure, they’ll not show up on club nights for a number of weeks but would return perfectly normal, so it appears to be quite a straight forward procedure (as much as any procedure can be).

Bit of a bizarre comment from the guy doing the echo. Did he elaborate or just leave it at that?

Wait to see what the consultant says, write down some questions in advance, stay calm, and work out which ones to deploy if the proposed strategy is going down the ‘no op’, ‘wait and see’ or ‘yes op’ track. Having someone around to take notes on speakerphone might be a good idea, it’s often hard to remember exactly how the coversation went.

eg

*What is the likelihood the defect caused the stroke?
*How likely are subsequent strokes if the defect is left uncorrected?
*How does that risk compare with the risks attached to the corrective surgery?
*Are there any non-clinical issues which are affecting your decision to operate/do other centres/colleagues take a different approach…?

Thanks for the input guys, including the helpful private message. martinhutch very useful advice/questions to ask. It was indeed a bizarre thing for the Dr to say. It sounded like she was a little disillusioned with the NHS. She didn’t say much else unfortunately (apart from not to go deep sea diving) just that my consultant would be in touch.

Bookmarked as my OH suffered a stroke last week and they think it was also caused by a hole in the heart. Fit healthy non smoking/drinking 36yo 🙁

She’s a lot better and has no visible signs but it’s affected her language and ability to talk, akin to a stammer is the best way I can describe it. Effin scary…

The Mrs went through that. She knew someone who had it fixed and they ballsed it up. I forget the details but it was enough to make my wife interrogate the doctors on pros and cons.

I was there for the consultation and if it was me I wouldn’t have it done. She didn’t have it done.

They advised her not to stand up and stick her head between her knees, hold her breath and squeeze. Yeah, like anyone would do that ever…

I see her do it every other day.

sorry to hear that swavis, hope your OH gets better very soon. Sounds very similar, I struggled to speak, couldn’t find the right words, slurring and stuttering for some time. It gradually got better though and was all but normal after about 3 weeks. My only lasting effect two months later is that my memory is now crap.

Elefant that’s interesting, I’d heard that the operation was pretty straightforward and extremely low risk. I’ll certainly ensure I get all the information from the consultant should I be offered the procedure.

Yeah, they said the same thing. She just knew someone who they got it wrong with. I thought the consultant was going to have a stroke himself when she brought it up as it turned out she was his patient too. He wasn’t a happy bunny being put on the spot.

The best the consultant could do if offer lots of ifs, maybes, we thinks and evidence suggests… I guess you do that, but it came accross as ‘we think we might see a benefit when we look at the data in 50 years time’ rather than ‘you really want to have this done’.

The NHS is massively underfunded at the moment and stuff that should be getting done isn’t getting done. I’ve been struggling with a painful long term condition for 6 years now and getting absolutely nowhere with the NHS, so managed to scrape some cash together to get the operation done privately, which should sort everything out I’m told.

If its an option then I’d go private. Without turning the thread into a political rant, he Tories are grossly underfunding the NHS to make it fail, so they can claim its not fit for purpose and then sell off the whole healthcare system to private companies.

Thousands already dead because of their benefits being withdrawn, thousands still to die because of an underfunded health service. Dark times we live in so look after yourself.

I know a few people who’ve had pfos fixed, all after getting bent while diving. Most had it done in a day, the anti clotting drugs after were the only downside they mentioned. Then after that they were bionic and unbendable…

I’d find out as much as possible about the surgery required to fix it.

A relative had a big hole, identified at 21. He was taken for full on open heart surgery within the week. This involved bypass and some major jigging about with the heart itself.

He was in hospital for a week afterwards, including time in ITU.

His recovery took a considerable time, and he has still to take medication many years later.

The cost, consequences and risks of all this may be considered ‘politics’, but having seen what can be involved in fixing a hole in the heart, I would definitely want a decent analysis of the risks and benefits of surgery versus no surgical intervention before signing up to it.

I would imagine the costs of having this surgery privately would be astronomical, bearing in mind the aftercare alone, let around the staffinng requirements in theatre for an open heart op – I think the operation itself lasted more than six hours.

As you have made it to 40 without suffering until now, I’d get your consultant to give as much information on the risks from not having surgery as possible. Personally, this type of surgery would have to be the very last resort for me before I decided to go ahead with it, as it is life changing.

Whatever happens, I wish you a very speedy recovery.

Colleague of mine (and friend) is having this done next Tuesday. They are doing his via keyhole… Through the large vein in the thigh…under local anaesthetic. He won’t need to stay overnight…. Literally in and out in 8 hrs.

There are a few good videos on YouTube…. Basically it’s a little umbrella that they wiggle into position through the vein and open it. Blood clots on the surface of the umbrella over next few weeks, sealing the hole.

His is around 1.5 inches in diameter…. So pretty big hole! He had a stroke at 45 and the subsequent tests picked up the issue he had from birth.

No idea if it’s the same thing as you but they can do amazing things these days 🙂 good luck and try not to worry.

I should add he was told that the procedure was available to him on NHS as the size of the hole was significant. It’s not something they can afford to do for everyone I would imagine.

My lad was born with a hole in his heart and a valve missing amongst other things (tetroligy of fallows for the geeky).
They’ve fixed the hole and some plumbing but left the valve.
7 years later he’s doing fine and just has annual check ups.

As I run a scuba diving operation I come across this more often than most people. Approx 1 in 4 people have a hole but only about 1 in 100 are of concern.
I know of at least 15 people that have had the op to close the hole and it was always done under a local via the groin area.
The classic scenario is someone around 40 that has an issue and the PFO is then tested for.
If the PFO contributed to the stroke then push for hard the NHS operation or check private options.

NH/ are fantastic, if you need an operation you will get it. I have A heart condition and I get treatment. It’s not politics

If you want information rather than uneducated opinion go to BHF site, it has all the info there. You cardiologist is also the person to give you expert advice and you can ask for a second opinion

“NHS Politics”

The doctor may mean risk/benefit/cost discussions as evidenced by NICE guidelines.

https://www.nice.org.uk/guidance/ipg370

The relevant nice guideline is IPG472 for your situation.

This is more useful for an overview of the subject, if you can decipher the language. http://m.eurheartj.oxfordjournals.org/content/33/6/705.full.pdf

Up to 25% of people have ASDs (atrial septal defect). When you can’t find another cause for a stroke these are usually blamed, but it’s important to bear in mind that the presence of a hole doesn’t prove that it caused the stroke. It’s a very nuanced argument whether to close ASDs and depends on lots of other factors. Your postcode however shouldn’t be one of them. They’re only done in a few centres nationally, but every unit will be able to refer you to somewhere where you can at least have a discussion about it with someone that knows the ropes.

Good luck with your recovery.

Thanks once again for the help everyone, and some very useful links

Just want to jump in and thank Natrix for his input as well. Good to hear from someone who’s gone through what I am.

My son was born with Tetralogy of Fallot (the same as Big Dean’s boy). Whilst he had all the issues (valvular stenosis, ventricular septal defect, over-riding aorta and ventricular hypertrophy) they were relatively minor. He did have a very large hole between the bottom two chambers.

The hole was fixed when he was about 5 months old. Amazing statistics from the op re. the amount of blood he had (6 litres), number of hours the heart was stopped (2) and the size of the hole – 1.8cm in a tiny baby!

We were ex pats and congenital issues weren’t covered by our insurance. We debated moving back to the UK where he would have had the operation on the NHS but on balance decided that staying in S.E. Asia was the best option.

Besides an awesome scar on his chest, he shouldn’t ever have any issues, any signs his heart was failing and nor will he need another operation. The patch they use gets ‘absorbed’ by the heart and is now completely covered by muscle.

The main issue caused by my son’s hole was that the heart was working far harder to oxygenate the blood than it should have. As it was working so hard, he needed 30% more calories but at the same time, found feeding difficult and tiring in itself.

I have great faith in the NHS. We were members of a few support groups and everyone’s experience was great. Just rememeber to keep pushing for what you want.

It’s amazing what can be done.