Son 37 had stroke

[Huegatort]

Hello I'm a new member of Headway, I didn't know this site existed until today.

My eldest Son had a stroke in January and we are still reeling from the shock of it! He also has a severe mental health problem.

We noted a problem with his eye and mouth and saw the Dr, he said he didn't know what it was and advised seeing the Dentist which we did immediately. As suspected there was nothing wrong with his teeth he goes to the Dentist on a regular basis.

I then took him to the walk in centre whilst taking my Husband for a colonoscopy, ( I had to leave him without helping get him undressed for his exam, he had had a heart attack and a quadruple bypass 6 months earlier and was still really frail) there we saw a young Nurse and she said he has Bells Palsy, we then saw a senior nurse and she said the same, we returned to our Dr and he said he didn't notice his eye and mouth problem; that's why we saw him!?

We were asked to go home and he would speak with a colleague then phone us back and he did and we went straight back to the surgery and he said our Son indeed had a diagnosis of Bell's Palsy and gave a course of pills and said come back in a month.

After 6 days there was a slight difference and after 7 he said his face was more numb and he had a severe headache and I phoned out of hours. They sent a Dr out and he gave an injection saying he had vertigo and it was due to his Bell's Palsy? He couldn't stand and once again I said I was concerned that he'd had a stroke.

I phoned for a Dr at out of hours and she advised and ambulance immediately. Two very small young ambulance girls came out, they ask what the problem was and we explained briefly. One got her phone out and was telling my Husband and I that it was Bell's Palsy according to google and the other was saying there was nothing she could find that would concern her and tried to talk us out of having our Son admitted but we insisted.

She told our Son to stand and he hit the floor and she said, "You got down there quick!?" He had to shuffle along on the landing on his backside and down the stairs and when he was in the ambulance she said, "We are in no hurry you haven't had a stroke!?"

When we arrived he had several tests and scans and he had had an Ischemic stroke!

Every professional I saw I explained my concerns that he had had a stroke and not one listened!

He has a hearing impairment in one ear and Nystagmus which has affected his balance along with the stroke itself. He has problems with sensing hot and cold. He gets tired so easily now. He is doing better and there is progress and we remain optimistic for the future.

Thanks for listening

Regards

[SteveHartnett]

Hi.

I'm very sorry to hear of your trials & tribulations!! I had my Stroke in 1998 in my early 30's. Mine was a (Bleed) We were in Spain at the time. I have made a fairly good recovery, but I have faced more health problems along the way!! You have had big problems with the medics along the which is not great really. Yes I found Headway & that's where things changed for the Better!!

Steve.

[angelite]

Hi Hugh,

A story revealing a shocking lack of professional knowledge and concern - sadly this appears to be becoming more common in some areas of medical practice. Here's what the NHS has to say about Bell's Palsy :

nhs.uk/Conditions/Bells-pal...

I noted the part that said it is a diagnosis given after other possible causes are ruled out.

I'm so sorry that your son did not get the appropriate investigations at the correct time. Pleased to hear that he is making some progress and glad you have found the forum - lots of lovely people on here to offer advice and support.

Kind regards, Angela x

[sporan]

It was investigation into an eye and face numbness that lead to the discovery of a brain tumour.

Non medical people around me had said it was Bell's Pausy but fortunately for me my GP at the time was quick to notice that the pupil on the affected side was restricted. He refered me for same day urgent investigation at eye department it was dicovered that I have Horners Syndrome which is damage to the sympathetic nerve which controls automatic responses. It is often a sign of throat or lung cancer (in my case not thank goodnes) and it was during those investigations the brain tumour (stable thankfully) was found.

I was then sent across to the neurology department for care.

I am so sorry that your son didn't get the proper investigations at the right time but it seems to be very much a lottery, often postcode related, as to what and how good the care you recieve is.

My thoughts and best wishes to both your son and the rest of the family.

SPoran

[cat3]

You've really been through it haven't you........................and had to find your own way through. I hope that you & your family are never subjected to such appalling treatment again, and that your son, and husband, are recovering well.

Best wishes to you all, Cat x

[Miss_Dizzy]

My stroke at 36 was similarly dismissed/disregarded by paramedics, A&E, the GP and urgent care. I suffered a medullary infarct (ischemic brainstem stroke) secondary to a vertebral artery dissecition (which was also missed 2 weeks earlier). The misdiagnosis from A&E was gastro enteritis (I too could not stand up!!!). Then labrynthitis from a series of healthcare professionals who could not even be bothered to see me. Four official complaints later, everyone apologised, profusely ,but I was a neurological mess by the time I was actually admitted into HDU at the stroke centre and treated (not 50 yards from where I had been a week before in A&E). This kind of stroke misdagnosis in the young is not uncommon. Unfortunately I don't see change happening any time soon.

I spent 2 months in rehab and my eyes took a further 6 months to realign. My sensation blew 6 days after my stroke, the nurse put a new cup of tea down and I told her it was stone cold, then burnt my mouth on scalding liquid, you will need to find strategies for this sensation loss. This took years to come back and is not great now but it is good enough to warn me to avoid injury. I lost confidence it would return as it took so long but it did and I now wish I had done the hot/cold hand dunking that was suggested. My right hand body and left hand face still feel like I have a dental injection wearing off. I still wobble a tad and have dizzy spells. Fatigue can still hit but not in the way it did in the first months when I would be out for the count for several hours in the afternoon.

The Horner syndrome had cleared before I left rehab, and within about six months the nystagmus had recovered to only being present in my far left gaze. Which it still, I turn my head left to look. I got permission to drive 8 months after the event. I would advise finding yourself someone in the know about the visual stuff. My physical rehab team were great, eye stuff at my local rehab hospital was a tad rubbish and I felt my vision was left to luck. It was my neurophysio I saw as an outpatient that armed me with the information and exercises to get my eyes in line. The right work really does help. It takes it toll though, overdoing it used to add to my vomiting.

Five years on, unless I have a wobble you would never know. And it has been that way for several years. I guess it must be a similar stroke given the comparative symptom list. The future does look good, you have every reason to be optimistic, I was always reassured by stroke consultants that young people who survive posterior strokes usually make very good recoveries. I have made a sound functional recovery and am managing life as an independent single mother. I can't manage a full time job as well as a six year old but I'm re training this year anyway.

I would advise making some complaints. It might help to ease your frustrations in the years to come and we need people to complain to get the problem the attention it needs and deserves.

Sorry about the essay but I hope it's been useful and I wish you all well on this recovery road. X

[cat3 in reply to Miss_Dizzy]

How unfair that you too were treated so shabbily whilst really needing specialist care.

Well done to you for managing those challenges and injustices, even before receiving the necessary medical attention.

All best wishes to you & your daughter, Cat x

[Miss_Dizzy in reply to cat3]

Thank you,

can't quite think how I did at the time now, but ya just do don't you, cos you have to! X

[Huegatort]

Thankyou all so much for taking the time to post; all very much appreciated!

The information that you have all shared is most helpful and your kind words of comfort and support.

I hope you all enjoy the holiday weekend.

Regards