I was 44 when I went in for an op, but when I came round I kept on falling over. Then after coming out of hospital I struggled. In the morning I would wake and feel ok, but by the evening I would start to list and fall over. This went on for over a year until my doctor sent me to see an ENT guy, who said I may have caught a viral infection whilst under the anaesthetic but said he would get me an appointment to see a neurologist just to be safe. I then got an appointment and when I met him I told him I thought I was going mad! A few others had actually said as much. He then did various tests and turned round and said, "no my dear you are not mad you have had a stroke". I then went for a CT, then an MRI, then bloods and a lumbar puncture. They then diagnosed that I tested positive for lupus and I had suffered a number of blips all over the brain besides the main one which was a brain stem stroke. I did take delight in telling a few certain people that I wasn't crackers. I unfortunately went on to have three more strokes as well as blips, when a consultant finally sat me down and said has anyone ever explained to you what has happened. I then told her no, I had seen one consultant and after that everything was done by letter? She sat me down and talked me through the whole thing.
I had a brilliant INR nurse for 8 years, she really knew what she was doing, then I was told that to streamline things I would be seeing my local nurse at the Doctor. They had been given a weeks’ training and relied on the computers to tell them what it should be. I complained but was brushed aside. My last stroke was caused by them when they would not listen that my INR level was too low. I was told it was in range! I told them no and to look at what my consultant had said, but that was ignored. When the last stroke occurred my consultant went ballistic. She wrote to them and whilst having a good rant she went on and said that it was better to keep my INR artificially high as there was less chance that it would cause further strokes. I still feel at times that the nurses think oh it's her! But after so long I know now just by everyday events that my warfarin is high or low.
Never let them push you into a corner by saying THE COMPUTER SAYS.
The nurses didn't know that you shouldn't use the hand gel before you go in as that affects your level. Nor did they know that twice a year they will have over a week a massive change in levels when they test you, as well as everyone else. At the age of 59 I then found out that I actually had Hughes Syndrome.
The worst part of all of this was that they would have known that I had a stroke whilst I was in theatre!
My advice is ask and ask for information if you have been diagnosed, even "blips". Don't let them fob you off. At 60 I am trying to live a little, remember if you really like your greens and vitamin k then follow it along with a little red wine.
Thank you so much for your story Linda. Wow! I can’t believe they actually let you out of the hospital. It’s bad enough trying to educate the general public about awareness of strokes but when you have had a team of health professionals around you who didn’t notice!
You certainly have a strong character to get yourself through 4 strokes. I was bad enough with one. I would never have thought about something such as the hand gel affecting your reading – of course it would! Every day is a school day. Thank you.