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Cassandra

One year and three-and-a-half years anniversary

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Hello, this is Cassandra's husband, Neil. Cassandra's journey of recovery went very pear shaped but she is back on the road to recovery now hopefully.

 

It's been a year since her last brain operation - the sixth in a series between December 2016 and January 2018, all needed to either revise her VP shunt or do some surgery on or around her fourth ventricle. Regrettably, the last two operations left her with significant damage to the 4th, 6th and 7th cranial nerves which has resulted in a range of debilitating deficits.

 

One of the worst is dysphagia, meaning she has a lot of trouble eating, chewing, swallowing, speaking etc. This has led to medical anorexia and the need for her to move to a tube-fed regime. She also has diplopia, which gives her permanent cross-eyed double vision, so its impossible for her to read, watch television, use a computer etc. Which is why I'm writing on her behalf.

 

Anyway, it's been 3.5 years since her SAH, and I feel that her hydrocephalus is now being managed with a twin-catheter shunt which can be adjusted externally.

 

Now she just needs to get back to 55+ kg after hitting 41kg, and have the strength and energy to pick up her various therapies and get back to some normality! 

 

Love to all of you dealing with your own challenges! 

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Hi Cassandra and Neil,

 

In 2009 I passed out while cooking my hubby a curry luckily he came home early as all that day I felt tired and he bought me in a nice bottle of wine and I just fell to floor SAH4, was rushed to hospital operated on. 

 

Just getting better then ventriculitis sets in and then after that Sepsis rears it's ugly head, my Daughter asked her Dad "Will Mum get better Dad" he said yes but who knows when !! I put them through the mill not my fault and I had hydrocephalus which kept me in cuckoo land.  A year later I had a shunt put in and I was told I woke up singing to a nurse.

 

Meanwhile my daughter found this site and I saw people who could laugh about what happened to them.  This site got my laughter back for me xx

 

Cassandra I know you cannot eat too well but please eat .  I swear my extra weight helped me get over this.  Now on a diet !! Try puree foods but to get better you must eat as our body needs it for when we feel rough.  Wishing you good luck and please let us know how things are going.

 

You will find this site a great help when on a downer or when you have a good day, It has helped me so much xxxx  Keep chin up and I'll keep my 2 up xxx  We are not the only ones and that in itself makes me feel better.

 

I played the OT's up when in cuckooland and they said to my husband "We think she should go into a home " I could be an old Dear sitting in a home with hydrocephalus.  Good job my husband said "we will take her home with us"  I knew they had it in for me lol xxxx

 

Keep well and get better xx Order from Win xxxx wink 

Love

Win xxxxxx 

 

 

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Hi Neil, so sorry to hear about the deficits Cassandra has been left with following the surgery.

This is just a suggestion, it may be possible for her to use the computer using voice activated software. There are some on the market and I think Microsoft has one. It may help to stop her feeling isolated. If she used to like reading there is the option of talking books. All things that could be investigated. 

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Hello Neil... many thanks for sharing about Cassandra`s progress.

 

Three and a half years .. and you both have been faced with immense challenges and setbacks. 

What comes through in your post is that there is still so much positivity in your words. I have immense admiration for you both.

Those who have been on the recovery journey for many years will reassure you that there is always hope for improvement, notwithstanding the complexity of the obstacles you have already faced.

 

Wishing you both the strength and support you need to continue.

 

 

Subs

 

 

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Hi Neil,

 

Sounds like both Cassandra and you have been through an awful lot in the last 3 years.

 

The recovery road can be very bumpy one at times with all that we have to deal with, I am so sorry to hear that Cassandra's last surgery has left her with the deficit's that have knocked her back somewhat.

 

I'm sure with the love and support she is getting from you things will start to improve and hopefully get her back on track no matter how long it takes, I think the ideas that super Mario gave you are brilliant and definitely worth investigating.

 

Sending you both love and strength as you continue on your recovery journey together.

 

We are always here if and when you need us.

Love

Michelle xx 

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Neil and Cassandra

 

What a time you have had and sending you both healing thoughts.

 

i recall when you last came on Cassandra you had just had surgery on the blocked fourth ventricle and it sounds like since then you have had no end of difficulties to face. How brave and amazing you have been to face those surgeries and complications but like Neil says I hope in time you will be back taking enjoyment from some of those therapies you enjoy. 

 

Audible app and subscribtion  is a good tool I find when there are eyesight issues, lots of amazing books  on it to choose from. It doesn’t compare but post my Shunt insertion I could not look at screens or concentrate for long so talking books really helped me. I also definately think using Alexa ( other devices are available :) ) would be a great aid to play music, searching things and also using some of the amazing reader apps out there. I have a friend who is completely blind and he can often find things quicker than me. 

 

The weight loss is hard especially if swallowing is difficult but hoping your professional teams are helping with that. I personally also have a theory that they high pressure from Hydrocephalus suppresses all appetite but also ability to absorb some nutrients so make sure lots of build up drinks etc when able. 

 

Cass, I felt your energy in your first posts , it carried all the way from Australia so sending some back to you. Search the spoon theory. We are sending you a spoon. 

 

Good luck and and hope this Shunt keeps you steady and improving. 

 

Daff. X 

 

 

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