Have I recovered?

Share your story Recovery journey
1

I'll apologise in advance as this is quite a long read  It took even longer to write as I misspell things regularly now.

In April 2018 I took ill whilst at work driving a truck.
After a call to the NHS helpline an ambulance was sent to take me to hospital, where I had chest x-rays, CT & MRI scans, blood tests, wired up to monitors etc...
After stopping in hospital overnight I could not wait to get home and back to work, I am not a good patient.

The Stroke Consultant diagnosed a stroke at the rear of my head, I checked with him and asked if it had been a TIA, his reply was that I had not had a TIA, but a stroke.

I informd DVLA, who suspended my entitlement to drive hgv's for 12 months.

Pre stroke I had no health problems, had not been to a doctor in over 8 years and did not take any medication for anything.

Post stroke I have no visible effects of the stroke, although my family have noticed a difference in me. I do have double vision, constant pressure around the sides, back and top of my head, a numbness down the left side of my face, the front of both thighs are constanlty numb with pins and needles, the rest of my legs feel like I have done a work-out, constantly feel drunk an dizzy, get tired all of sudden after very little work, slur my words a bit when I get tired and have to concentrate when talking to people (I tend to stare at them, as it takes a second longer to register what they are saying). I still have all of these symtoms and have had them since the stroke.

I was discharged by the hospital, which was not in my home area as I had been away from home at work when I had the stroke, back into the care of my GP.
On my first visit to my GP he stated that I looked perfectly fine, because I have no visible signs of the stroke. I started to go through my problems and he decided to treat them one at a time, stopping me at the first one (double vision) and not wanting to know the rest until he had sorted this one.
My GP advised that I should see Opthalmology at my local hospital, but that there was a long waiting list due to the financial pressures on the NHS and advised that I might be better arranging to visit my own optician, which I did.

After a full examination by my Optician, she confirmed that my eyes were functioning correctly and that my prescription had not altered. She wrote a letter to my doctor to refer me to Opthalmology at the local hospital. Her opinion was that as my eyes were functioning, it could be a neurological problem, but my GP would sort that.

I finally went to Opthalmology, had the tests for my eyes and the opthalmologist confirmed that my eyes were working correctly and agreed that my optician might be correct, but as the optician had pointed out their field of expertise was opthalmology not neurology.

I visited my GP and he has now had the letter from the Opthalmologist stating that he had review my original MRI scan and concluded no stroke.

My GP has now stated that there is nothing wrong with me an when I questioned this stating the problems I still have his reply was that we could go around in circles all day and that the NHS has already spent a lot of money on me. My reply was that I pay my taxes from my wages to be able to use this system and asked what happens now, he shrugged his shoulders and said you're fit for work. I asked him if I could drive a truck again an he replied sure.

I have re-applied for my hgv licence even though I still have these problems, in the 8 months off work I have lost over 30k in wages and now that the doctor has signed me fit to return to work my private health insurance stops, my employer will not let me back to work without a valid licence, so I will end up with no income as my wife works.
DVLA go with the Stroke Consultants diagnosis of a Stroke, so the original 12 month suspension stands.

So it would appear that according to my GP, my road to recovery is complete, a factor that my family and myself would strongly disagree with.

Has anyone else had the same kind of experience and is there any light at the end of the tunnel ?

2

Oh dear you really are going through it, a lot of you're issues, fatigue, legs prob, pins/needles, speech, concentration etc will be familiar with all us stroke survivors. Out of interest did you GP check your balance?  My stroke consultant had me walking a straight line putting one foot in front of the other, which I couldnt do, you would have thought I was drunk!!!  So I use a stick to help with balance.  

If I were you I would contact the original Stroke Consultant and tell him what your GP has said. If they say you have had a stroke then they are the experts.  Even though you are out of the area I am sure they would be happy to speak to you.  Hopefully you have your discharge notes with all the details you will need.  You should be entitled to a six month visit back to the stroke consultant, I have had a six month one and now a yearly one. You could ask them if they could refer you to your nearest stroke unit.

I would also ring the Stroke Association and get the contact details for your local stroke coordinator who may also be able to help.

As for the doctor well!!!  he might need some bedside manner training! is all I can say.  My doctor has been amazing.  Is there another doctor in the practice that might be more understanding.  One of the problems with stroke is that so much of the side effects are not physically able to be seen unless you have actually lost movement.  

Don't give up you are entitled to the help.  Good luck, let us know how you get on..

Wendy

3

Hi Wendy,

Thanks for the comment and th good advice.

I will take your advice and contact the original consultant to see if they can offer any advice.

My biggest concern is causing injury to anyone by having to return to driving when my vision is still a problem.

Pre stroke I was active, worked away from home 5 days a week and then when home on the weekend worked that too taking vehicles apart. I was always lifting engines, gearboxes etc so use to heavy manual work, when I try that now I cannot do it, I end up making the cups of tea  its all very frustrating.

My GP has not checked my balance at all.

4

Dear Dazc

What a rotten time you are having. After care for us stroke survivors is not good, but yours was just diabolical.

Clearly you are getting nowhere with your GP so I do agree you should try a different GP. Hidden within the bad experience, it is quite a good idea for a GP to treat your problems one by one. But they should be your choice. In the meantime you need a stroke specialist to help you out. Maybe the stroke association will give you a coordinator. Failing that, ask the staff at your GP surgery (no need for a GP) if they can give you contacts for stroke survivors. It varies from area to area. For instance,I have a really good voluntary group, but my area is not covered by the stroke association.

Do try to find your discharge letter. When discharged from the hospital, they write to your GP and you should have a copy. If you havent got this, then ask the GP staff. You are entitled to a copy. This notice will state your diagnosis. In my case Ischemic stroke, right lacunar infarct.....left sided weakness and post stroke tiredness. The "infarct" is the bit in our head that has done the damage. You cant "undo" a full stroke, so whatever is going on with your Doctors I dont know.

The problems you described are typical of a stroke. No two strokes are the same but most of us have common symptoms. I doubt that you could have explained those symptoms unless you have had a stroke. 

Does your employer have an HR section ? If so, I would seek their help. If HR dont have a stroke specialist then they should find one so that they can treat you fairly. Maybe another doctor will sign you off so that the private insurance kicks in again.

I feel so sorry for you. You deserve a bit of proper help and you havent had it so far. Find the right people and things will change for you. 

Best wishes

Colin

 

5

The original consultant and hospital should have discharged you to a hospital with a stroke unit in your area. Find out which of your local hospitals has a stroke unit and tell your gp to refer you, don’t take no for an answer, tell him you want a second opinion. And you need another sick note. Take a family member with you. make notes and put in a complaint.You are possibly overdue for another mri and a consultation and he should facilitate that. 

Gp’s are not trained stroke doctors. 

Unfortunately sometimes you have to be assertive, so push them.

dont drive until you are really able to.

dont give up, take plenty of rest. It takes time to recover. Keep in contact with this site, there are a lot of great people here who kept me going. You are not alone.

6

Hi Colin,

Thankyou for the advice.

I have found my discharge summary and it states primary diagnosis as Stroke (POCI).

After the advice given so far I will be back in touch with the original consultant to get any feedback from him. I will also look up my local support group/advisor.

My work have been really good and have put me on holiday for 2 weeks in an effort to give me time to sort my licence out, but that looks like it is not going to happen.

I really do not understand my GP as he seems so disinteretsed in trying to help me recover, this in itself has been so frustrating, I have constantly had the feeling that he thinks I am faking it.

Regards

DazC

7

Hi Sandy,

Having not used the NHS for years I had no idea what was supposed to happen.

When discharged from the original hospital I was given a leaflet and told to see my own GP. I was given a follow up appointment with the original hospital about 7 weeks later, at which point the hospital discharged me to my GP.

The only other consultant I have seen is the Opthalmologist in November 2018, who after looking at the original MRI scan has written a letter to my GP which states no stroke, this is what the GP is basing his decision upon.

I will be checking for local support after all of the advice from people on this site.

Regards

DazC

8

When I was discharged it was to recover at home supported by my gp. I was told I would get another mri scan followed by an appointment with the consultant. This happened however I did have to chase them on a couple of occasions. I’ve also had support from occupational speech and occupational therapy. I had to chase this as well. Unfortunately you have to push to ensure you get the support you need. 

Your ophthalmologist is not a stroke consultant either so why does he say you haven’t had a stroke when the you original diagnosis was a stroke.

you have not been treated well so unfortunately you need to make your voice heard. As I think it was Colin who suggested you should contact the stroke association, sound advice do it as soon as you can.

The first few months are really difficult but it does get better, lots of gentle exercise and rest.

Take care

9

Dear Daz

Well done, you really are looking for some help.

Stroke recovery is so very slow. No one can understand us, only another SS can understand.  Your GP sounds to be very unhelpful. Seeing things from their point of view, they dont have the time or resources to deal with us. We all need special care from people who know about strokes. And that care is not available.

The idea that you might be faking is not right. You have been fit and well for many years. No way could anyone fake a stroke. Have faith in yourself and please do get lots of rest, keep hydrated, be positive and smile a lot. Many of us are out here for you.

Colin

10

Hi dazc sorry to hear you are not having the best of aftercare. I have been lucky as my area has a high stroke incidence and so a very structured follow up care pathway. For driving, I understand that there are driving assessment centres around the country who can do a test with you to see where you are at. Maybe try a wee Google search and see what is local to you. All the best x

11

Your welcome, I hope the consultant can help you.  I too wouldnt drive with the vision the way yours is, might be worth going to optician for peace of mind. The balance test you can do at home, just try walking in a straight line putting one foot in from the of other making sure your heel touches big toe each time, if you go over to one side then you have a balance issue, you can also see if you can stand on one leg!!  which I had to do at my PIP assessment, I couldnt without holding onto the desk.

Do let us know how you get on, and do try to talk to local stroke coordinator they really are amazing and can help with forms and just listen to the moans about what we can no longer do.

I have been off work for 18 mths and have just started back at my school doing two mornings a week which is all I can manage.  It is very frustrating when you cannot do all the things you used to do, my poor husband takes the brunt of my ranting!!! poor him.

Wendy

12

Wow what an experience you have been through. I too feel like I have had to fight at every step of the way. I make sure that I always have someone else at my appointments with me to verify what was said after. Hope you get it all sorted and don't give up you are entitled to a second opinion 

13

I would like to thank everyone for their advice, it's been a real help.

I will be acting on the advice today and hopefully I will get sorted.

I feel more confident with the new found information from you all, once again a big thankyou and I will let you know how I get on.

Thanks

DazC

14

Just a quick update.

After phoning around everyone, it would seem that my only way forward is to go back to the GP and ask to be referred back to a stroke unit.

Trying to get an appointment to see the GP asap to sort it, fingers crossed I get one for tomorrow.

15

I managed to get an emergency apppointment with my GP.

My sister came along with me for support, why I had not asked her before I do not know as she deals with health professionals on a daily basis.

She knew exactly when to interupt me and precisely what to say and how to word it, the end result is I have been referred to my local stroke unit at the local hospital.

The relief I feel is unbelievable, I had got to the point where I had no fight left in me.

This would not have been possible were it not for the advice from the people on this site and my sister.

Once again many thanks and I wish you all the best.

16

That’s a good step in the right direction, dazc, let’s hope things move swiftly for you now. Keep in touch. V&J

17

Magic sister ! Thats just the type of help you have needed to set you in the right direction

Colin

18

Thankyou Veronica, as you say it's a step in the right direction.

Regards

Daz

19

Hi Colin, I've started calling her my secret weapon :)

I should have asked her for help sooner, but she has her own health issues and I did not want to risk causing her any distress.

Fingers crossed now it's put me on the right path.

Regards

Daz

20

Dear Daz

Good man.

I love the term "secret weapon". 

You are such a thoughtful person, thinking of others despite your adversity.

Colin