Hi Debbi,
We are sorry to hear about your ongoing challenges you are having regarding your Cavernoma.
It also sounds like it has been difficult to connect with people who have similar experience with Cavernoma. We know this is not in Australia, but you may wish to connect with the UK group- Cavernoma Alliance UK (CAUK), they have a lot of information available which you may find helpful.
We are pleased to hear you are following up with your Neurologist. You may wish to have a look at this website, as it has a good list of questions to ask your neurologist that might help you get some clarity about your condition and symptoms you are experiencing - https://cavernoma.org.uk/questions/
I would also encourage you to ensure you are familiar with the signs of Stroke and when to be concerned.
The Stroke Foundation recommends the F.A.S.T. test as an easy way to remember the most common signs of stroke. Using the F.A.S.T. test involves asking these simple questions:
· Face Check their face. Has their mouth drooped?
· Arms Can they lift both arms?
· Speech Is their speech slurred? Do they understand you?
· Time Is critical. If you see any of these signs call 000 straight away.
We use the acronym F.A.S.T. (Face, Arm, Speech, Time). Facial weakness, arm weakness and difficulty with speech are the most common symptoms or signs of stroke, but they are not the only signs. The following signs of stroke may occur alone or in combination:
- Weakness or numbness or paralysis of the face, arm, or leg on either or both sides of the body.
- Difficulty speaking or understanding.
- Dizziness, loss of balance or an unexplained fall.
- Loss of vision, sudden blurring, or decreased vision in one or both eyes.
- Headache, usually severe and abrupt, onset, or unexplained change in the pattern of headaches.
- Difficulty swallowing.
If you notice any of these signs no matter how long they last contact 000 immediately. You can read more about signs of stroke here Signs of stroke | Stroke Foundation - Australia.
It also sounds like it has been an incredibly difficult time for you. We would encourage you to please speak with your doctor or other health professional about how you are feeling as they may be able to provide a referral to a psychologist or counsellor. You may be eligible for a Mental Health Treatment Plan which lets you claim several sessions with a mental health professional each calendar year.
If you would like more information, please do not hesitate to contact us on StrokeLine 1800 787 653 or email strokeline@strokefoundation.org.au. We are available Monday to Friday 9am to 5pm AEST.
Best wishes,
Strokeline
