Cerebral Amyloid Angiopathy: the Sword of Damocles

Too young to have a stroke?

We spent the weekend trying to get our head around what had happened. How could this be? He was so young. These sorts of things don’t happen at our age but of course these sorts of things can happen at any age. 

We met with the neurologist on the Monday and his whole approach put us more at ease and he was easily able to identify the source of my husband's  symptoms. A small Sub Arachnoid Haemorrhage on the outside of the left side of his brain was clear on the MRI. This type of bleed causes a blood clot to sit on the surface of the brain and as it resolves over time it becomes irritated and sets off some temporary symptoms. He told us that it should resolve in a few weeks. However, the multiple strokes (very minor) identified by the radiologist were present but the neurologist said that this was not uncommon in people of his age but that it could be a condition called Cerebral Amyloid Angiopathy. He was gentle with us, for which I am eternally grateful and told us that this may never happen again and “try not to go through life feeling like the sword of Damocles was hanging over our heads”. With this he bought us an extra couple of years of relative peace. I think that if he had told us the full story in all its detail, it would have been too much for us at the time. 

I consider myself to be very health literate but he gave us an extra couple of years where we tried to live a normal life and I avoided as much as possible the temptation to google this condition. There are times I think now that you don’t want or need to know all the details in the early stages. I can’t believe that this sort of approach which some would cast as “paternalistic and patriarchal” is actually acceptable but for us personally it was very helpful at the time although not the way I would normally operate.

We lived with the uncertainty for the next couple of years with the occasional sensory symptoms appearing and disappearing just as quickly as before. As time went on we became more comfortable and able to put it to the side. I retired and my husband retired and we were ready to start the next stage of life. First grandchild, travel and other opportunities.

Comments

Post a Comment

Popular posts from this blog

Brene Brown and Vulnerability

Image
In the arena of being a carer Over the years when I have found times to be tough, I go back to thinking of the quote "The Man in the Arena" but of course these days it would be good to re-title it as "The Person in the Arena". Theodore Roosevelt many years ago captured beautifully the courage of the person in the arena who "dares greatly", sometimes over and over again. Being "in the arena" is hard work. Sometimes you feel strong and can roll with the punches but at other times you feel like curling up in a corner of the arena and just taking a rest. Other times you may need to exit the arena temporarily or for a longer period but no one can ever say you didn't give it a crack and you can take pride in the fact that you were not one of those "cold and timid souls" who prefer to point the finger from the sidelines. What does this have to do with CAA? It's a tough job as a carer and tough as your role changes from th...
Read more

Amyloid Spells

  Amyloid Spells: What are they? This is a term that I only recently became familiar with. If you do an online search you will probably come up with something like this   Amyloid spells, also known as transient focal neurological episodes (TFNEs), are brief recurrent neurological episodes that can occur in people with CAA.   They can mimic seizures or transient ischemic attacks (TIAs) and are often misdiagnosed. Amyloid spells are caused by the deposition of amyloid-beta protein in the walls of blood vessels in the brain, leading to vessel fragility and potential neurological events.   So .... this explain s a lot. My husband's new neurologist   explained these at his last appointment. When asked about what signs and symptoms he had experienced since the last appointment we discussed: Days when his memory appeared to be worse than usual Difficulty writing and/or reading Sensory changes in his face and arms Additional confusion when confronted with tasks Repo...
Read more

Compassion and Connection for Carers

 Compassion and Connection can come from surprising places. Some time ago I presented to Accident and Emergency with mild chest pain. I was not concerned but thought that it was prudent to have it checked out as we are always being told. I was not surprised that my cardiac function was fine.  The staff did a couple of other tests and while waiting for the results of these, one of the A and E doctors came to see me to have a chat. I mentioned that my husband had Cerebral Amyloid Angiopathy and I had recently started taking an anti depressant and that it was probably just some physical manifestation of mild anxiety. What did surprise me was his reaction when hearing of my circumstances. He took one look at me, went and shut the door to the cubicle and pulled up a chair and said to me with such sensitivity "that is a horrible, horrible disease". Most medical and other practitioners that I and my husband come across have never heard of the condition. Not only did he immediately u...
Read more