I was having a stroke-in-progression and nobody believed me. The symptoms were getting worse yet neither the doctors nor the nurses noticed! At first I found my deteriorating symptoms bewildering. I only realised on day four of my admission that I was having an evolving ischaemic stroke. However, by this time, I could not speak fast enough and the doctors were in too much of a hurry to listen to me.
Doctor did not see deteriorating symptoms
Every day for approximately 4 days my symptoms were evolving. Day one was just my eyes. One eye looked up while the other looked down. I sat in Accident & Emergency (A & E) for some 12 hours with no-one knowing why my eyes were focusing in different directions. A nurse checked my blood pressure and then asked me to take a seat. Several hours later, another nurse checked my eyes and again asked me to wait. Eventually, at about 4:00 in the morning, a doctor decided that I might be having a stroke. My husband had been unable to act F.A.S.T. because I didn’t fulfil any of the requirements. I didn’t know then that I was having a stroke-in-progression! Neither did I know that the symptoms were getting worse. I was, later, referred to a ward where I finally saw the Stroke Consultant and her team.
Really the symptoms were getting worse
On the second day, the stroke team established that my right side had become weak. At no time did they ask me if I could still use it. On the third day the weakness on the right side had become worse. I could no longer use my right leg but I could still use my right arm. By now it should have been obvious to them that the symptoms were getting worse. They should have taken steps to stop the progression. Instead, their assessment/examination was so quick that I didn’t have a chance to formulate the question that would show that the symptoms were getting worse. I was unable to tell them that I was having a stroke-in-evolution. So I spent the whole of the next day and night practising talking to the team and getting my point across to them.
The Fourth Day of Worsening Symptoms
The next day, day four, I was able to ask a junior doctor, a member of the team, about the worsening symptoms. After going away and having a chat with her boss she returned to confirm that the stroke was evolving and that it could go on like this for a year or more. I asked what the team was doing about it. The junior doctor could not explain this to me so she promised to let me have a word with the consultant.
Meeting with the Consultant
For sure, the consultant and her team returned to see me. One of her team mates was really angry with me. How dared I ask them to come and see me? Didn’t I know that they were doing the very best for me? Did I think that they didn’t know what they were doing? I was so shocked by his reaction that I forgot what I intended to say to the consultant. The consultant failed to protect me from this man. She was obviously on his side because she never asked me what I’d intended to say to her and she never again came to see me. Now I really understand what patient bullying means. I was soon moved to another ward where a different consultant was in charge. I was there for a further 3 weeks but I never again asked about my symptoms.
Never heard of it
I told the physiotherapists at the first hospital that my symptoms were getting worse. This was during the first week of admission. The physiotherapist denied that this could happen. In fact, the other physiotherapist informed me that she had never even heard of such a thing. I was not in a position to disagree. I could not think fast enough and my concerns were dismissed.
Still evolving
Even after this, my symptoms continued to evolve. In my 3rd week at the second hospital, 9 weeks after I was diagnosed, I noticed that I occasionally went blank. The speech and language therapist would ask me a question and I’d be unable to find the answer even though I knew it very well and it was on the tip of my tongue. I would search and search my brain for the words but the answer would remain elusive. Some thirty minutes or so later after the speech therapist had left I’d be able to answer the question. The situation continued to get worse but at this time the therapist had taught me about finding substitute words.
I also noticed, at this time, that my tongue occasionally pointed towards the right. Six months later I was actively avoiding situations where I had to explain or discuss anything. My spoken word was becoming worse and my tongue was now permanently pointing to the right. No-one noticed the worsening symptoms but me.
Right-Sided Weakness
My inability to use my right-side had become obvious by the fourth day of the stroke. My right arm and leg were no longer moving. The physiotherapist taught me to walk using a quad stick and I did this for several months. However, by month nine my fingers, arm and leg on the right became stiff in addition to the severe weakness. The toes turned the other way, under my foot. They did this all the time including anytime my gait and balance were affected. I had to stop going for walks because it became quite painful. I found this really discouraging and it took me several months before I tried to go for a walk again.
Why didn’t the medication stop the stroke-in-progression?
I was discharged with 4 blood pressure medications, an anti-cholesterol and a blood thinner. My GP (general practitioner) added two more high blood pressure medications, the endocrinologist added alendronate and the nephrologist added folic acid. In total I was now taking 10 tablets of which 6 were high blood pressure medications. The stroke continued unabated. Surely the medication should have worked? Surely it should have stopped the progression? Should it not have stopped the stroke? Why were my symptoms worsening when I was taking all the drugs they had prescribed?
The answer to all these questions is that the stroke was not being treated. The so-called stroke risk factors were being treated, risk factors that are evident only to doctors, nurses, research institutes and pharmaceutical companies. People who have never had strokes!
Was I getting the right treatment
Catching my disease early was supposed to improve my quality of life. That’s all very well in theory. In practice, there was no way this could be done when healthcare professionals failed to recognise the disease being presented. Not only that, they treated what they thought had caused the disease not what actually caused it. Was their treatment right for me? Was taking alendronates, blood thinners, anti-cholesterols actually going to stop the cerebrovascular attack (CVA)? I was having a CVA for at least 36 months and nobody acknowledged that but me. The medication did not halt the progression of the disease. By the end of 12 months more medications had been added. Yet the stroke continued to progress!
Bibliography
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Fisher, M. Garcia, J. H. (1996) Evolving stroke and the ischemic penumbra. Neurology. 47 (4). Available from: https://doi.org/10.1212/WNL.47.4.884. [Accessed 11 April 2019]
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