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 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.
Hi
Firstly sorry the slow reply.
I had a stroke in Octâ '14 and sorry if this rambles on.
I was 49 and very fit and active - I was still a competitive cyclist.
I was found collapsed at home, rushed to local hospital. I had a massive headache and vision had been severely damaged.
Local hospital decided Iâd had a fraction to something possibly a tick bite and were going top send me home at 2 nights in hospital. A friend, who works in the NHS, got involved and said thereâs no way I should be sent home. Hospital moved me to a on a Saturday morning to a more specialist teaching hospital in the next county.
I was given CAT and MRI scans and then advised Iâd had a massive stroke. I was given lots of tests including cardio echograms but they couldnât find the cause of the stroke.
Sounds you, like me, donât present as a âtypicalâ stroke patient eg no paralysis. Being told "you look normal etc can be irritating and dispiriting and I did sometimes feel a bit of a fraud.
However my vision had been radically affected - Iâd ask questions like is that a window or a painting!
The bit of luck I did have was that a physioâ therapist prompted by something what my wife said identified prosopagnosia / face blindness) and topographicalagnosia / placeblindness.
Whilst still not having diagnosed what caused the stroke the hospital wanted to discharge me to âcontinue my recovery at homeâ - I was receiving approx. an hour a day of therapy.
We were fortunate that at that time, through my wifeâs job, we had excellent private medical insurance. Problem was that the nearest specialist hospital (The Wellington) had no space. Insurance conditions meant I couldnât be discharged home from the NHS hospital and then go to The Wellington. I had to be collected by the Wellington from the hospital I was in.
There then followed a bit of battle with the hospital I was in who wanted me âoutâ.
I was transferred, had all the tests repeated and therapy started. I was doing a structured mixture of cognitive and physical activities.
Include in this therapy was a 90 minute post-lunch snooze and it was recommended that I continued with this snooze after I left them.
However this time they arranged for an echo bubble test to be carried-out on Tuesday morning.
A PFO was diagnosed within two minutes of the test being started!
We saw the consultant later that afternoon who explained what had happened and what could be done.
He recommended I consider having the PFO closed. My wife asked when it could be done. He said âif not next Tuesday then definitely Thursdayâ!
Iâll admit I was extremely nervous (scared!) about having something done to my heart.
A friend of mine (another cyclist) had been diagnosed with a PFO after having a stroke in his mid 30âs (clot was caused by DVT) he had to wait several months for the procedure to be carried-out - which he said was the most stressful bit.
My friend did a great at reassuring me that my fears about the procedure were almost identical to his etc.
I had the procedure carried-out (it took about 20 mins under a GA) and whilst it was a success Iâve been kept on clopidogrel as they werenât able to identify what caused the clot.
I did suffer from fatigue so continued with my afternoon nap for a couple of months after I left hospital.
However I did find physical activity helped me mentally as it gave me a positive distraction / something else to focus on etc other than what the stroke has done to me. I did everything from getting back to bike riding, did a lot of swimming and even pilates - I thought if I got the blood pumping around it might repair some of the damage! I think the real benefit was keeping my occupied!
and occasionally I just had a good vent!
Hopefully you did manage to get your PFO closed and things are more managable they were.
Thank you.
Pfo surgery completed and all went well. Recovery is a daily process. Back in the pool and doing my distances. Have accepted i will not be as quick due to left side weakness/technique.
Still suffer with stroke fatigue and somedays this is worse than others.
I wish you and everyone the best of health and the road to recovery is smooth. Really appreciate this group as you all understand. Thanks