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Recovery from craniotomy?


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My Mother who has had 2 bleeds & 3 coiling operations since September 2015 underwent a craniotomy last Friday. The surgeons decided that the nature of her aneurysm was too unpredictable to keep coiling the traditional way, so opted to clip it instead. Before we decided to go with the operation we were given the risks. The main one was a 20-25% chance that the procedure could cause a stroke which would effect the mobility of her legs. As a family we decided to go with it anyway as the only other option was a coiling procedure & a stent together. This carried the same risk of stroke, however may not be permanent like the clipping. The neurosurgeon advised us that the recovery from the clipping would be longer, but the thought of a permanent solution outweighed everything. 

My Mother was still suffering from extreme fatigue, momentary confabulation, memory problems & balance issues caused by the type 5 re-bleed in April 2016. However, during a meeting the week before surgery, I noticed major improvement. She was in an environment with strangers & commanded the conversation, followed all the points in a complicated setting, objectively weighed up the risks & came to a reasoned conclusion to the meeting by telling the surgeons she would like the weekend to decide which procedure to have.  I was really happy when she even remembered the conversation & names of the surgeons days after, as well as the procedure & all the risks. She came to the same conclusion by herself which was the same opinion as mine & my Fathers.

Now it has been over a week since the operation & I'm fearing we made the wrong decision. She is in my local hospital in the stroke unit extremely confused. She stares into space when we talk to her & everything she says doesn't make sense. She was in a similar condition after coming out of a coma last year. When the surgeon said the recovery would be longer than the coiling I was not expecting this at all. Feels like she has gone backwards 7 months :-(

I'm trying to get a meeting with the neurosurgeon to hear his opinion. In the mean time has anyone been through something similar or knew of anyone in a similar situation?   



 

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Hi Luke

 

I'm sorry you are going through such a worrying time,  but having gone through this with my partner a week is so so early.  Your Mum has gone through a major op and it will take time to recover. It will be a slower recovery but hopefully Mum will come through ok.

 

A type five bleed is quite a major bleed in its self, have patience, start a diary and be there for Mum as you have been.

 

Wishing you all well.

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Hi Luke :) 

 

Thoughts are with you. It must be so very hard for you and your Dad to see your poor Mum go backwards like this, but its for a way forward to a permanent solution.

As Paul has said, it is very early days after her craniotomy and recovery will be slower.

Your Mum is a fighter, she has proved that by doing as well as she has :) and also has the wonderful caring support of you and your Dad.

 

Sending lots of positive vibes your way & wishing your Mum a speedy recovery.

Remember to look after yourselves too and let us know how you are all doing.

 

Take care

Tina xx

 

 

 

 

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Hi Luke,

 

I called it Cukooland  as I saw and spoke but everything was in the past, I saw my Daughter but she was at school age and she is 40 plus

 

I remember weird things like nurses jumping on me and I swore at them.

I fell out of bed lol xx poor nurses having a seizure !

 

This was in 2009,  I also had a catheter in which also made me ill. 

2010 came and they decided to move me to hospital nearer to me

 

Then they said a shunt would help me and Neuro Surgeon said if it was his wife he'd have it done.  I woke up singing to a nurse so I am told and have gone from strength to strength. 

 

Was told I would never walk again now I can walk 200 yards when feeling okay but when back aches approx. 60 to a 100 yards.  A Walk is walking though !!   I sing old songs my Family sung to me while out of it .  Every little you can do to help your Mum even if it seems daft do it xx

 

She is in there so good luck to you all and never give up on her xxxxx Give your Mum my best wishes xx  If this makes no sense I am typing with dog on my lap xx 

WinB143  xxxxx

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Hi Luke,

 

Firstly - welcome to BTG.

 

This must feel like a very tough time for you.  I would just like to make the following points for you to bear in mind.

 

The brain is the most complex organ in anyone's body. When something upsets it, it takes longer than the other organs to repair and its impact on other parts of the body, in particular those it controls, can seem rather dramatic until they start to settle down and return to a more normal functioning.  The bottom line is - it takes time and you need to be patient.

 

Perhaps the doctors could have been a little more helpful here - I suspect they were talking about weeks and months rather than hours and days in recovery.

 

Your Mum helped to make the decision herself and it was with longer term effects in mind rather than a short term fix that may have just delayed the inevitable, which was the operation she's just gone through.  She knew what she was doing and hopefully, in the long run, it will turn out to be the right one  Please don't beat yourself up about it.  It seems hard at the moment, but hopefully she should start to improve.

 

Talk to people and get things off your chest.  If you just bottle it up your mind and imagination will just run away with themselves and problems will appear worse than they really are.

 

In the meantime, when you go to visit her, even if she isn't responding, talk to her, read to her, so she can hear your voice.  It is amazing how much goes in even though there is no response at the time.  It will also help you to cope, knowing that you aren't just idly sitting by doing nothing.  You are playing a big and active part in her recovery - don't forget that.

 

I was in a coma for a week and when I came round I didn't know a plank from my elbow!  It took me several weeks more to start talking any sense and I was 'only' coiled.  After a clipping I can only imagine it's more of a major thing to overcome and the best thing you can do for your Mum is to allow her, as in a football match' that 'extra time' to recover and just be there for her.  In that way hopefully you will secure the right result.

 

Keep a diary to chart her progress.  Over time, and when you are with her everyday, it can seem like nothing has happened, but when you look at a diary, small steps show a definite progress, a bit like when you haven't seen someone for a while and you say  'wow - you've grown, lost weight' etc.  If you were with them every day you wouldn't have noticed.

 

Please keep posting to let us know how she is getting on.  It will also help you to let us know your thoughts, so we can help you to the best of our abilities.

 

Good luck and sending my best wishes to you and your family.  Hang on in there.

 

Macca

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2 hours ago, Macca said:

Perhaps the doctors could have been a little more helpful here - I suspect they were talking about weeks and months rather than hours and days in recovery.

 

Your Mum helped to make the decision herself and it was with longer term effects in mind rather than a short term fix that may have just delayed the inevitable, which was the operation she's just gone through.  She knew what she was doing and hopefully, in the long run, it will turn out to be the right one  Please don't beat yourself up about it.  It seems hard at the moment, but hopefully she should start to improve.

 

 

 I do think the Dr's could be better with communication. We were not expecting her condition to go this far backwards, also no one has told us if this is normal or not. . Just got to think positive until we get more information I guess.

 

I've gone though this all before, so I will do what worked for her previously using the info i've got from this wonderful forum & her rehab team.  :-)

 

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That's the ticket Luke. Mum is just back at the bottom of the snake on the board for now but if you apply the same love care and attention as I know you have previously then hopefully you will benefit from some of the ladders you have already placed as the days pass. 

 

It's really early days as everyone has said and the operation and effects of the anesthetic will be really hard on her brain anyway, it's back to baby steps for now and we are here if you need us.

 

Take care and take your breaks too remember ? Tell mum well done, we are rooting for her! 

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