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Update Re Annie and a request for feedback


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Firstly things have hectic, but nice to be back on line. Annie is continuing her rehab in a Supported living placement attached to a Residential Care Home. Her condition remains the same, she is still hoisted and in her wheelchair. The environment where she is now is great and the stimulus she gets is brilliant. There have been some small improvements cognitively and Annie has started to initiate conversation and assistance.

 

Annie had her Supra pubic catheter fitted 4 weeks ago. (Here is where I need some feedback) Since the procedure Annie has had 3 episodes where she can't be roused, as if in a deep sleep. She has no responses to pain and no verbal responce the episodes last between 3 mins and 6 mins. When she regains awareness she is a little confused but aware of her Suroundings. On two occasions she has complained of headache, presure at the back of her eyes and feeling sick. Each time Annie was taken to hospital, however no reason for these episodes has been given.

 

Annie had a scan following the first one and all was good in comparison to previous scans. Shunt working fine. They referred to a previous EEG done in August which showed no Epileptic signs.

 

Has anyone witnessed this type of episode and what was the outcome. I hope that Annie will be home with me before Christmas as we now have an adapted property but these episodes are a cause of anxiety and reassurance goes a long way to maintaining a positive attitude.

 

Here's hoping you are all well.
Chris

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Hi Chris,

 

None of us are medical so we can only tell you what happened to us so here goes..Ready? 

 

In 2009 I had a bleed I kept drifting off and  they put it down to my catheter,  I kept falling asleep and got a high temperature.

 

I dreamt a man was chasing me with a large pipe and my daughter was so worried she called the doctor out.

He was the only one to recognise I had an infection caused by catheter.(UTI)   My daughter said he took it out  and I went "ahh" and fell asleep

A peaceful sleep she said,  as I remember only the dreams and the bad pain.

 

Good luck

WinB143 x

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Hi Chris

Good to hear from you and I am pleased that Annie is in a good place and it sounds like her recovery is steady. As Win said we can't explain or advise from a medical standpoint but only share our experience.

I haven't shared too much on here about the effects of hydrocephalus for me on top of the bleed but I personally experienced considerable challenges with finding a shunt setting that worked for me to be able to function without problems. All shunts come at a factory setting and a lot are adjustable but for me that first setting I had , well let's just say it wasn't great , the valve drain setting was wrong for me and as a result I ended up back in hospital a fare amount , and had a number of adjustments until we got to a good setting where I am now at.

 

I kept a record detailing what all the effects of each setting and pressure were and how they exhibited with me so we knew if I needed to be turned up or down. My neuro team have told me they found these explanations and descriptions helpful as often patients weren't able to articulate this as patients are either young babies when they have a shunt placed or are recovering from the early effects of the stroke or brain injury. I had had five months of recovery in between my bleed and having the shunt was placed which meant I could be very clear as to what was happening and what it felt like.

So I'm not sure what kind of shunt Annie has but if it is working fine and her pressures look ok then it could be worth asking if the level setting could be a reason behind these episodes for her. if she has an adjustable one then they find a change may be worth considering after discussing with team, if it isn't adjustable it just means more time to get used to the setting she has and try to limit any sudden movements.
I had to be literally shaken to waking in the mornings when my setting was lower than it is now and I would take a considerable while to rouse fully and then would feel awful but what you describe with Annie's sounds more dramatic than anything I experienced.

 

Is Annie upright most of the day at the centre and then completely flat at night ? What I have learnt Is when you are lying down most shunts have a gravitational valve which adjusts the draining rate which does let the ICF pressure raise up a bit more and it could be that the effect of this is putting temporary pressure on her healing brain, but when she is raised up her valve opens up and drains like it should so any scan would show her pressures are ok ,but the effect or a sudden drain from higher pressure can be horrible and the shift can sure make you feel sick.

My suggestion for what it is worth is to make sure she isn't lying completely flat at night and see if that makes any difference , even now I don't lie completely flat as the pressure it creates behind my eyes, also make sure when she is raising up her head to maybe do it slower than maybe they have been, if they hoist her straight to upright that might be uncomfortable . My personal theory is that the brain is healing from the bleed and sometimes just can't cope with all the changes in pressures and it takes a while to settle in. I am two years with my shunt now and we have a steady relationship but the first year I found extremely hard and up and down and difficult to tell what was bleed effects and what was shunt symptoms.

Good luck Chris, pass Annie our regards. She's doing well.

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Hi Chris,

I can't say I have any knowledge or experience of this but I just want you to know that I hope all goes well for you!

 

As you can already see there are people who know of this and I'm sure others will give further knowledge soon.

 

Good luck,

 

Macca

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Many thanks for the feedback.i realise that the members are not medically qualified to advise but the realisation that what Annie is witnessing is witnessed by others gives me a well needed lift. When you love a person so much that any changes from what is now our new normal impacts upon our positivity. Thankyou for the added strength and the empowerment to keep fighting and the will to reach the finishing line.
Chris

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Chris,

 

My hubby and daughter had to fight for what they thought was right for me, glad I had them in my corner (Boxing talk lol)

 

Ask about catheter as it's better to be safe than sorry and if you see her not right tell them so.

 

It makes you sleepy and out of it,  if it isn't at least your mind is at ease,  as they did not clean mine and my daughter had to fight for it to be emptied.  When I had a shunt fitted it was like someone waking me up from a deep sleep. xx

 

Good luck Both

WinB143 xx

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Chris - Best wishes to you both!  I learned a lot with this discussion as I didn't even realize there were multiple settings to a shunt - and I have one!  Win...all I can say to you is ...thank God you got the shunt and woke up to make us all happy!  

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