Disappointing day

TalkStroke closes on 5 February 2018

As My Stroke Guide has grown into a trusted online stroke community and support tool, we’re closing TalkStroke and asking you to register for My Stroke Guide. It will be easier for you to get all the online support you need, all in one place.

This unique, custom-built tool gives you the opportunity to create your own social profile, make friends with other users and message them directly. There are many ways to interact with one another, such as using the My social forum, posting on the public social wall and joining specific groups based on your interests.

We hope you register for My Stroke Guide, which is quick, easy and takes no longer than five minutes. You can register whenever you want to – either before 5 February or after the closure. You’ll benefit from using all the new features and keep the conversation alive in a supportive and welcoming community.

We’d like to thank you for all your commitment to TalkStroke and we hope you join us soon on My Stroke Guide, our trusted online stroke community and support tool.

If you have any questions, please call us on 0300 222 5707 or email us on mystrokeguide@stroke.org.uk

Not checked in for a while, hope everyone is getting by in their daily battles! Had a bit of a disappointment today my stroke consultant referred me to Bristol royal infirmary to discuss the large pfo finding from my bubble echo in Torbay, it seems that the nhs hasn’t got the capability to send my results and images over to Bristol so I had to get jabbed with more needles and have another bubble echo sadly the pfo hasn’t miraculously healed and today’s test confirmed again what I already new. After that i spoke to a nice chap dr Mark Turner about the situation and unfortunately the funding for the pfo closure is still not likely to be available and won’t even be considered until April 2019, so it could quite easily be quite a number of years before this operation is funded again, despite the evidence that shows beyond doubt that I had a stroke because of the pfo, privately the operation costs £17000 so if you could all kindly check the back of your sofas for any coppers or silver that would be ideal lol. Seriously though it’s so frustrating to have strong evidence beyond doubt and still not be eligible for this procedure apparently in other parts of Europe it’s standard to just get on and do the operation but not our beloved nhs who can’t even get my date of birth right or address and can’t send files via email either. Just an all round disappointment. On the bright side I’m still alive and kicking back to work tomorrow rendering some walls and generally getting by as best I can. Everything could be a lot worse so chin up ...

After I come out of the hospital had a mighty fine Guinness in a local tavern! For medicinal purposes keep the blood thin!

The NHS is almost broken mate...overpaid consultants *...too many managers and assistant managers*,underpaid and overworked staff....and then there's the ever expanding and ageing population.....

* (and their pensions)

Hi Joe, that's disappointing news for me too. I'm waiting to see the same Dr, after being referred three months ago, following confirmation of my PFO during echocardiogram and bubble test. Can I just ask, did they look at your heart also via a monitor down your throat at Bristol? That's what my consultant suggested. I'm 56, so they already said I was well down the priority list for a possible PFO repair, so by spring 2019, it sounds via unlikely. But at least we're both fortunate to still be here. Take care.

I had a quick ecg and blood pressure job and then the bubble echo where they inject the bubbles through your arm and they essentially see the bubbles venture where they shouldn’t be going, nothing down the throat. I guess they have a different plan for each individual but for me I would be put on the waiting list as being a suitable candidate but the waiting list doesn’t even exist yet because there is no money to do it . It’s literally just vague speculation when it might come back on the nhs.

Hi gents
I had the bubble test but was negative for the PFO
In any case the cardiologist said that studies showed those with a PFO were at no greater risk of stroke or ischemic attack than those without a PFO and of course heart surgery is not without risk so the current thinking was crack on with the clopidogrel to negate any clotting issues in the first place. Not sure why they would bother looking for the PFO in the first place, this being the case?
Different horses for different courses I suppose.
I’ve had a look down the back of the sofa, sadly only found enough change for 2 pints of Guinness .....
Get well

Two pints of Guinness is a worthy contribution my friend:-) I think the latest studies across Europe and USA show the link quite clearly between stroke and pfo, and like you mentioned why bother checking for it if it wasn’t a factor. So in idiots terms I believe blood clots most commonly form in the legs and if you have a pfo there is a chance the valve can let the blood clot through to the brain before it gets filtered by the lungs. Mark Turner and dr Bhaskaran at Torbay Hospital have no doubt the pfo is to blame.

Hi joe
Not doubting you or your quack for one moment, to me it continues to display inconsistency within the profession when it comes to stroke , something that led to me having a delay in diagnosis for 4 weeks after Mine.
I also mentioned it also as your op seems at least 18 months away, so not to spend time waiting and worrying- I’m By no means a medic but I’m thinking ( Piecing together info from my quack!) if we can prevent the clots, then happy days, the presence( or not) of the PFO is Immaterial when it comes to stroke risk.
Good luck

I’d happily stay on the drugs but I don’t want to have any spontaneous bleeding or anything messy like that and I don’t really want to be on tablets for the rest of my life either. My doctor thought apixiban was better for me than clopidogrel.

Category

Share

Charity information

Stroke Association is a Company Limited by Guarantee, registered in England and Wales (No 61274). Registered office: Stroke Association House, 240 City Road, London EC1V 2PR.

Registered as a Charity in England and Wales (No 211015) and in Scotland (SC037789). Also registered in Northern Ireland (XT33805), Isle of Man (No 945) Jersey (NPO 369).