Bizarre sequence of events leading to SAH

[j_h]

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.

[Tina]

Hi JH a very warm welcome to BTG  

 

Such a stressful worrying time for you and your family. 

The good thing is your Mum is in the right place and the Drs are doing all they can to find the answers.

I hope all goes well on Monday with her cerebral angiogram and the antibiotics helping her chest bug.

 

Wishing you and your Mum well and look forward to hearing more from you.

Please keep us updated as and when you can.

 

Take care

Tina.

 

 

 

[Skippy]

Hi JH

 

A very bizarre sequence indeed.  As Tina said, your mum is in the best place and I'm sure the Drs will be doing everything they can to find out what has happened.

 

We cannot give medical advice here, but we can offer support and experience.

 

10 hours ago, j_h said:

Another CT and cerebral angiogram showed no evidence of aneurysm.

 

All I can personally deduce from this is that your mum has had a NASAH (and that is not to say I'm right and is something you MUST ask her specialists) - which is rip/rupture/tear of an artery wall without the aneurysm.  There is a section on this forum for NASAH and it might be worth you having a look around the posts in there to see if you can find any similarities to your mum - though I'm not sure we have had this sequence of events before.

 

I'd make a list of questions in a notebook as you think of them and ask the Drs when you see them - also write down the answers they give. It'll act a good reference for you as I can imagine that a lot of what you're being told will either be baffling or won't be remembered - and that's perfectly normal given the stress that you will all be under at the moment.

 

Please feel free to look around this forum for comfort or reassurance, and remember to look after yourself too.

 

Take care, and fingers crossed that your mum recovers well xx

[Daffodil]

Hi there. Just want to send you postive thoughts and healing wishes for mum. Keep sending her that love as trust me she will feel it wrapping her even when sedated. I did. 

 

. I had a sudden grade 4 SAH with EVD, although I had an anneurism so a bit different  to mum. The blood dissipates down the spine after a bleed, this is painful and takes months to fully disperse but great that your  mum got fast and prompt Help, this will help her recovery but it will be a long road. 

 

take baby steps for now if you can, it’s a big shock for all but this can’t be rushed and you need to measure from the ‘worst’ to see the progress mum Is making. Sedation actually gives the brain a chance to heal , it doesn’t have to work so hard at doing all it’s other jobs, 

 

Once she’s awake Try to help her minimise her coginitive load as her brain starts to heal , so not too much of anything without rests but come back when you are ready and folk will share what’s will Help mum.

 

but as Sami says right now look after yourself, that’s what your mum would want most.  X

[j_h]

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

[Skippy]

Hi JH

 

I believe when they say "without cause" it means the absence of an aneurysm.  Any type of SAH is technically classed as a stroke as its a disturbance of the blood flow to the brain.  My SAH was caused by a ruptured aneurysm and I was paralysed down the right hand side of my body until after surgery.  14 years on it is still weak compared to my left side.

 

I know that all these tests will be exhausting for your mum and you'll be feeling very protective of her and not wanting her to be poked, prodded and scanned but they wouldn't be doing anything is if it wasn't necessary.  They will not be able to provide you with a diagnosis until they have investigated all possible causes.

 

Hang in there, but don't be afraid to ask the doctors questions as to where they're taking her and what for - as her child you have a right to know.

[j_h]

Hi everyone, hope you’re all feeling healthy and positive today.

 

Mum had a repeat MRI which showed two lesions (?uncertain exactly what they are) on her cervical spine and a corpectomy is the next plan. 

 

Anyone have any experience or knowledge on this? 😊