A family member has suffered a severe stroke following a major bleed on the brain. MRI has led to a prognosis of Cerebral amyloid angiopathy (CAA). CT scans indicate the bleed does not appear to be getting worse. The patient is still quite immobile and limited speech. She has been in a private rehabilitation hospital for 1 month now and has developed blood clots on the chest and legs which are now an added major concern. 2 other leading hospital doctors are quite confident this likely due to the sedentary bed conditions, yet the lead doctor at the rehab hospital states it's not and likely something else without providing much more insight. This conflicting advice and limited information is quite concerning. I'd be interested in your professional thoughts on this or what you would recommend we do next. In addition what are the treatment options for the blood clots as blood thinners are too risky given the CAA condition? I can provide any more information if required.

Hi Alex,

Thank you for your questions. I’m sorry to hear about your family member having a severe stroke. It must be difficult receiving conflicting information at such a stressful time.

I suggest you request a family meeting where the medical team will be present or make a time to speak with the Doctor when they are doing their rounds. Prepare a list of questions such as:

• What has caused the clots if it isn’t from being sedentary? Let the rehab doctors know this is what you have been told before (if you haven’t already told them this) and you’re having difficulty understanding what is causing it.
• What are the treatment options, including any risks and/or benefits? The treating team should explain what the risks and benefits are for each treatment option, including medication based on your family member’s full medical history and diagnosis of CAA.
• Is there anything else that helps to manage the clots?
• Does your family member need to be transferred to an acute hospital setting for treatment?

Here is a resource that may help in getting good health care. Having another family member present with you at any meetings can be helpful for that emotional support but also to write notes and help take the information in.

Please give us a call on StrokeLine 1800 787 653 if you want to discuss further or email strokeline@strokefoundaiton.org.au. We are available Monday to Friday 9am-5pm AEDT.

With kind regards,

Kath