We are so sorry for you. It depends on the symptoms whether patients choose to go to hospital. Especially the first stroke can be very frightening and for some it is the first time they hear of Dutchtype CAA. Hospitalisation is not always necessary, but it is good to contact emergency services if you are worried.
For patients in the Perth area in Australia, neurologist Dan Clarke is available for questions. He can be contacted through Samantha Gardener at s.gardener@ecu.edu.au.
If you are outside the Netherlands or the Perth area in Australia, your doctor may want to visit this page. The website specializes in sporadic CAA (the nonhereditary form of cerebral amyloid angiopathy), but gives a good overview of what CAA is. There is also an index of specialists around the world that can be contacted in case of questions.
If you have any questions, please do not hesitate to contact our CareCenter. We are happy to help you and answer your questions, and if we can't, we will try to find somebody who can.
We would like to inform you of your options, although we realise that it might be hard to get proper care outside of the Netherlands, because of a lack of knowledge of health care providers. For patients with Dutchtype CAA, there are two rehabilitation options after a haemorrhage.
Inpatient rehabilitation
Sometimes recovering at home is not possible and inpatient care is needed. Outside of the Netherlands there are no specialised wards for patients with Dutchtype CAA. There are neurologist, physiotherapists, etc. who are specialized in stroke who can help you.
Outpatient rehabilitation
You visit the rehabilitation centre for treatment. The rest of the time you are at home.
Inpatient rehabilitation after a stroke is useful if you have problems with:
It is probably best to ask your GP or neurologist abouw how to organise care. In some countries it is possible to get a casemanager. They can help you navigate healthcare and are also there to support caregivers.