Any advice welcome .

f77mas. What a worrying time for you. One reason why your DS's strokes were not noticed could be because he was having TIA's (transient ischaemic attacks). These are small strokes that the patient often does not realise they are having, he may just have had a short period of disorientation, dizziness or loss of balance and then continued as he was before.

One of my aunts had several without anyone being aware of them and it was only discovered when she had a more serious stroke and was admitted to hospital. They did a brain scan and could see the damage to her brain these minor strokes had caused.

I cannot comment on the treatment he has had as I have no real experience of this, but it sounds very poor and I do think you should complain.

What a worry. I hope your son gets the treatment he needs and you both get the answers to what went wrong. It’s important to at least complain so that the risk of it happening to somone else is minimised. Kitty what a terrible thing to happen and to be let down when your so vulnerable must have been a double blow. Watching our beloved children suffer is gut wrenching. Most of us would gladly take their pain ourselves. It’s really hard standing feeling helpless on the sidelines while they suffer.

Hopefully, now things are moving you will get some answers.

DS'S stroke was not caused by diet, being overweight or any avoidable factors. He had a dissecting aneurysm which blocked the flow of blood to his brain.

He was checked for lots of different things including a hole in the heart, BP.

I think moving forward is the most important thing now and getting your son the best treatment available.

Our son's peripheral vision has never come back.

Elainel , I completely agree with all you have said . There was no after care as far as I can remember (it was a difficult time as he moved straight from the hospital to my house) His vision issues were put down to hypoxia and the slurred speech and difficulty with reading , using his phone etc did resolve within a few weeks fortunately but the lack of peripheral vision continues . I will seriously think about what you have said re making a complaint and speak to other family members, I just don`t think I can do this on my own due to my own health problems . My main concern is how to reduce the risk of another stroke- apart from heating a healthy diet , loosing a bit of weight etc . I was surprised at the speed of discharge and the lack of anything after . If he hadn`t had the restless leg symptoms the strokes would never have been discovered . However it is all go now with tests and Cardiology appointment .

So sorry f77ms about your son. As a nurse reading your initial comments about slurred speech and vision problems, it was immediately obvious to a health professional that he should have been fast tracked as a stroke possibility as soon as this happened and had immediate CT scan of chest and brain and treated for all of those emboli. There should have been rehabilitation and assessment of needs and probably he is entitled to some financial help. I would say that his care at the time and after was less than adequate. You need to write to the hospital manager recorded delivery outlining your complaints and ask for their complaints procedure booklet. He could have died or be left severely disabled! Glad he is able to do volunteer work now.

differentstrokes.co.uk/

The link to Different Strokes.

Part of treating a stroke s finding what caused it to prevent a recurrence which involves lots of tests.

Our son had his stroke while living in Japan and the hospital were brilliant - he had physio three times a day. Unfortunately, his insurance didn't cover him for out patient treatment and there was no nhs type after care available, despite the fact that he was married to a Japanese girl. He came home after 6 months and the nhs were brilliant and started a whole array of investigations and treatments. The nhs has been fantastic throughout. He also had a lot of help from Headway.

His wife, on the other hand, brought him home and buggered off back to Japan and divorced him.

Please pm me if it would help.

Thank you Silverlining I will contact DStrokes before we go . He only went for his follow up from the embolisms last week , the Dr just asked if his chest was OK , no examination and it all took just over a minute for him to be discharged .
Loopyloo , I hate the idea of suing for negligence but must say I have been quite surprised by the lack of follow up from what was a life threatening illness . I know the NHS is stretched but felt that we both could have done with a bit of support afterwards .

I have just googled different strokes, sorry dont know how to put a link on here. As kitty sAid they support younger people who have had strokes.

Why not see if you can contact different strokes before your gp appt so you can check with them and go prepared with your questions.
Hope you get some answers, all good wishes

One wonders why he had the pulmonary emboli in the first place. Presumably he had a clot in his legs. Hope you get some answers this week. Wish you all the best.
You could possibly see if you have a case for negligence. If he can only manage voluntary work it might help him to cope financially.

Thank you both for answering , I will try Different strokes Kitty . I am sorry to hear that your son also had this happen but glad that he is doing well , just wondering -does he get much support or after care from the NHS ? I am hoping to get some info next week from our GP when we go together . I thought that treating a stroke had to be done very quickly , it is over a year since his embolisms which is when I assume that the strokes happened . We have bought some low dose asprin until we go !!

I'm going to bump this before it drops off the bottom of active.

Unlike kitty I have no direct experience of stroke but Want to wish you and your son good luck and hope that he will now get a proper diagnosis and the right treatment.
Her advice is helpful re finding information and support from a charity group.

What a terrible time f77ms.

Our eldest son had a massive stroke aged 35. There is (or at least was) an organisation called Different Strokes which is specifically for younger stroke survivors. You might find information there and there is a chat room too.

My son is mow living independently and, while he will never be able to work again, he does lots of voluntary work and lives a very fulfilled life.

Please pm me if it would help and talk to us here.