Hello all,
I am new to this group. I had a stroke just under 8 months ago. It hasnt been easy as the care i have had has been lacking. I am lucky that i work in the NHS so i have a little knowledge. Like a lot of us that i have been reading i did not follow the typical signs of a stroke. It started as a normal Thursday morning,called upstairs to child for a wake up call. By the time they were downstairs at 7.10am i had the stroke. As a single parent he went next door to get help and paramedics were called. Unfortunately from 8am after a CT scan i was told to sit in A&E and there i stayed until 4.30pm. I stayed overnight and had my urgent ultra sound and MRI Friday 1pm. At this stage everyone one thought i had FND and i had also convinced myself this was the case. The MRI confirmed the infarct to the frontal lobe. I was discharged by 3pm that day. I have done all my rehabilitation myself. I had a ECG with microbubbles. This confirmed the PFO. I spoke to the heart consultant this week ( not been seen by anyone apart from heart tests)who has said that i need the surgery. I have to travel to London for the operation and then all the aftercare will be done in the local hospital. There is a 3- 4 month waiting list.
My questions are, has anyone had this procedure done? Does anyone else feel like their life is in limbo? The fatigue is out of this world. I am permanently exhausted! However this could be stroke, single parent with an eye rolling pre teenager, works full time and post
menopause. Attractive picture!
Sounds weird but i cant wait for the operation so i can start life again.
Unfortunately i have the saying that your friends are better than family 
. However none of my friends are medical and do not really understand. I also feel like a fraud as i now look " normal". I can see the stroke but friends says they canât. I have constant pins and needles down my left side and heaviness. Thank goodness i am a stubborn cuss.
Thank you everyone for reading. I just needed to vent and know we are not alone.
@2107 Hi & welcome to the forum. Sorry youâve had a stroke. Your treatment sounds similar to many on here. Sadly all too often people get left to find their own way.
I had my stroke then a few months later got diagnosed with FND too so am battling both now.
Many people battle the âyou donât look like youâve had a strokeâ comments. I usually remind them that often symptoms are hidden & can be worse than the visible issues.
Iâm not surprised youâre fatigued if you have all that going on. Iâm permanently exhausted & currently off work again to try & get my fatigue sorted. If youâre juggling work & a pre teenager that must be exhausting.
Once youâve had your op hopefully youâll be able to start living your life as you want again.
Sending my best wishes
Ann
Hi @2107
Welcome 
Sorry youâve had a reason to join us
Youâre very welcome to have a rant This is a good place to do it because people accept that we all need to and we donât mind at all & we understand
Youâll find a lot of folk here who wonât be surprised by anything in your post 
If you search with the magnifying glass youâll find posts on your questions. - folk with pfo divide into those just on meds and those whoâve had a closure- it seems a very mundane and short simple procedure for folk who have posted about their experience
Most of us have therapy etc thatâs short of adequate for all sorts of reasons. Fatigue & limbo & pins and needles etc are normal. So is that oh you donât look like you had a stroke
One thing I would suggest is accepting the fact that youâve had a stroke and that you are on a new life part now so you dispell the idea of that You should just wait back to normal - embrace and improve on where you are now because of waiting could well be forever
We put the own repeated stuff in Welcome - what we wish we'd heard at the start
Ciao
Simon
Hi @2107 welcome to the forum. Great place to be with loads of information and advise. You never feel alone here.
Steve
I canât comment on everything you mention but can definitely empathise with the âlife in limboâ situation. I had my stroke four months ago, and was also retrospectively told that I had a PFO that would need surgery. I will have to travel to Manchester. I have since heard nothing despite chasing. It is very frustrating to not know anything. I was told the waiting time could be âup to 9 monthsâ. For me, I have also been left confused by whether the PFO was a cause. I was initially told, in my case, that the PFO was not a direct cause of my stroke (that remains unknown) but merely provided the âpathwayâ. But then in a letter another consultant referred to it as a cause. Perhaps it doesnât matter medically, but for me it does. I too have had pins and needles post stroke in my arm, but only at night. Not something I had before. I also have the issue, that if I didnât tell anyone, no-one would know I have had a stroke. So you are not alone, I find that aspect very tough - on one hand I donât want to be defined by my stroke but on the other, feel the need to tell everyone I meet! It can also be quite challenging if you are quite shy / introvert to be told you need to set the agenda for social interactions. I do hope you get to have surgery soon and that at least one of the unknowns can be put to bed.
Hi, soooo many of us got no real âcareâ ⌠in total 10 TIAs and taken to hospital 3 times, but left for many hours in A&E without seeing anyone ⌠just went home, someone arranged a CT scan âŚdiscovered I had also had 2 small brain bleeds , so totally understand how you feel ⌠unfortunately I have no idea what PFO or FND mean or what other shortened words (sorry I canât find the word I need, but that is normal for me ⌠you will get lots of support and help on here though. ⌠abbreviations yeeeeees that was the word I was looking for âŚ
Val âŚ
Thank you and i wish you all the best for your procedure Rufus.
Thank you everyone for your kind words.
The hardest thing is that the health professionals have concluded it is the PFO and this was only said in a letter. I have not seen anyone Face to Face. As i work in the NHS i do have some understanding of how the machine works. As i have been told i need to see myself as the patient and not the professional.
I am glad i have joined this group as it has helped knowing their are people that understand the non visible effects of a stroke and i thank you all from the bottom of my broken 
which hopefully will be fixed soon. Healthy wishes to you all. N
PFO is short for patent foramen ovale otherwise known as a hole in the heart. Not heard of the other acronyms!
FND is Functional Neurological Disorder. Itâs a condition where the signals from the brain become scrambled. It can cause everything from muscle weakness through to seizures & many other things - a lot of which can mimic a stroke.