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Posts posted by j_h

  1. Hi Tina, Skippy and Daffodil.


    Thank you all for your re-assuring replies, it feels very nice to be given some confidence and care from those who have gone through this.


    Mum's cerebral angiogram got replaced with a spinal angiogram - this spinal angiogram showed no malformation or fistulas, and therefore, still no answer as to why the bleed happened.


    Can someone please clarify for me, at which point does the med team diagnose a perimesencephalic SAH - as I understand, a perimesencephalic SAH is a bleed "without cause".

    Mum is quite weak in both legs especially the right side. She has ongoing neck pain and headaches - I think the neuros are mostly concerned about strokes but there has been no evidence of this.


    I can clearly see that every time they take mum out of intensive care for an intervention, scan or else, she takes 24 hours to recover back to baseline (baseline = open eyes, responsive, eating and drinking slightly). 

    I have a deep gut feeling that mum just needs rest for a few days without moving her back and fro - I truly believe this will help her stabilise. I want to tell this to the doctors but I'm exhausting myself with the thought that if we "let her be" and something bad happens, it will be my fault. 


    Can someone speak about their experience with prolonged diagnosis? 


    Mum has been in intensive care for 8 days now and I don't believe we are any closer to a diagnosis. Maybe there just isn't one.


    Thank you all again

    • Like 1
  2. Hi everyone, thank you for welcoming me.

    I want to report a very bizarre story about how my mum ended up with SAH.


    Mum is a healthy 58 year old but with ongoing aches and pains. Last week, she woke up on Wednesday the 21st Oct with tight chest pain and feeling ill, which she knew was different than usual. She called her GP and she got an appointment straight away.


    At the appointment, her ECGs looked concerning so they sent her to Emergencies at the hospital for further checking. While she waited in ED she got light headed and dizzy. Upon admission, she got some Aspirin incase of a block but she was resistant to take it because her blood is very thin already, she complied and took it.


    After multiple ECGs, echo and blood tests, the Drs couldn’t see anything definitive but they weren’t happy as the results were inconsistent. On Friday the 23rd, mum woke up with a headache but was still well, moving, eating. Cardiologists decided on a coronary angiogram. Inside, mum got anxious and her blood pressure went very high so they sedated her a little more.

    After the coronary angiogram, mum would not gain consciousness. She was nauseous, vomiting like crazy (bile as stomach was empty) and crazy neck pain. They waited for 6 hours for her to wake up but she didnt - one thing after another CT scan showed Grade 4 SAH. She went into an emergency EVD which was successful.

    Another CT and cerebral angiogram showed no evidence of aneurysm. She was progressing with talking and eating after extubation, but yesterday she was intubated (again) for an MRI. This showed a lot of blood throughout her spine and a lesion between C5-C6 explaining the neck pain. But no definitive conclusion of what it is - could either be a stroke, fistula or malformation or tumor. She is still intubated with a chest bug and antibiotics.


    They are all very unsure about the sequence of events and can’t make any associations between what happened - there’s so much uncertainty from a medical perspective. They want to do another cerebral angiogram on Monday and keep her sedated and intubated until then.


    Two days before Wednesday’s admission, mum definitely over exerted while gardening and we don’t know if something happened on those days to lead her to waking up unwell on Wednesday morning.


    If anyone, anywhere has any guidance, assurance for me and my family, I would appreciate it so much. As you can imagine, this has been such a shock to us and would love some help.

    • Like 3
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