Epilepsy, Hydrocephalus, Hemiplegia & Sight Loss

Help & Support:
*Epilepsy
http://www.epilepsy.com/
*Hydrocephalus
http://www.medicinenet.com/script/main/mobileart.asp?articlekey=9089
*Hemiplegia
https://www.epilepsysociety.org.uk/hemiplegia-and-epilepsy#.VyhPkcvTXqA
*Sight Loss
https://nei.nih.gov/lowvision/content/know

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Epilepsy is a neurological disorder that affects all ages.
It can cause unexpected seizures and can result in further health problems.

Hydrocephalus once referred to as "water on the brain" now means "fluid on the brain"
It increases the pressure inside the skull and may cause an enlargement of the head, especially in children.

Hemiplegia is a paralysis of one side of the body.
It can be a result of trauma, Timor's, stroke or other medical conditions.

Sight Loss is a medical term that is used to describe low vision or no sight.
People with low vision can have partial or blurred vision.
Other terms for sight loss are; completely blind, legal blindness and partial vision.

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Hannah, age 24 is diagnosed with all the above.
Hannah kindly agreed to an interview with me in order to raise awareness of these conditions.

An Interview With Hannah:

Condition 1 - Epilepsy:

What is your name and age?
My name is Hannah and I am 24 years of age.

When were you diagnosed with epilepsy?
I was diagnosed in year 2000 at the age of 8.

How was a diagnosis made?
I went into something they call "Call status" this basically means I was in a constant seizure and they couldn't stop it. I was then intubated meaning a tube was put down my throat and a machine was breathing for me.
I was then transferred to a bigger hospital for scans which declared I had epilepsy.

What symptoms did/do you have?
Symptoms of epilepsy vary from person to person.
I believe epilepsy is a condition you cannot generalise or stereotype the symptoms.
No two people's epilepsy is the same. And it can change as you get older.
When I was a child I had "auras" 5 to 10 times a day.
An aura is a sign that something is just not right.
It's not necessarily a sign to say you're going to have a seizure but it's a sign to say you're not very well.
Some people think of them as many seizures but they will ask for seconds. Auras can change as you get older.
When I was a child my aura was "a funny smell not necessarily  horrible though" Now I'm older, my aura is a funny sensation in my face.

Is it hereditary?
No it is not hereditary

What causes it?
As I said above everyone's epilepsy is different and that goes for the causes to. Mine was caused by a brain trauma and scar tissue on the brain.
That started at birth (see below) but of course my Epilepsy didn't show itself until the age of eight.
Other causes can be such as having a stroke or a brain tumour.
Another cause could be drug or alcohol misuse.
And lastly if you have problems in your pregnancy or birth of your child they can develop the epilepsy as a result. Problems could be deprivation of oxygen or a twisted umbilical cord.

Is surgery required?
No surgery is not required

Have/do you suffer seizures?
Yes I do suffer from seizures but they're getting less and less.
The seizures I suffer from are tonic clonic seizures also known as the grand mal seizure.

Do your seizures affect the whole body? Most people collapse on the floor and convulse.
Luckily I don't though and I can give you warning that I'm going to going to seizure in a few minutes time.
I normally get myself out of danger and put myself in the recovery position waiting for my husband to give me my rescue remedy.
If at its worst, I'm connected to care link which is the emergency services service. That gets an ambulance to me straight away.

Is it safe to drive and swim?
It is not safe to drive.
It depends who you ask and their opinions on is it safe to swim.
I can swim and do enjoy it but I don't swim without someone watching me as I don't consider it safe.

How is it treated?
My epilepsy is controlled with medication in tablet form.
I take 13 tablets a day for my epilepsy which amounts to 3 different types of medication which amounts to 17010mg of medication

Condition 2 - Hydrocephalus:

When were you diagnosed with hydrocephalus?
I was diagnosed with a hydrocephalus when I was only a few hours old.

How was a diagnosis made?
The diagnosis was made by the doctor is checking with the circumference of my head.
They have a chart to see what is normal and what is not.
Mine wasn't normal, mine was off the scale.
They then checked my fontanelle ( soft spot) where the skull has not fused together yet.
Instead of being soft mine was hard. They scanned me there and then and told my parents "this is water and shouldn't be here, one of Hannah's ventricles is blocked, this condition is called Hydrocephalus"
The next day I was transferred to another hospital with my dad to have life changing brain surgery to put a shunt in.
The shunt works like the ventricle should work.
It drains the fluid from my head into my abdomen.
Either ventricle could have blocked but with me it was my right.
As I've just said my shunt drains into my abdomen but there are other shunts that drain into other parts of the body.

What symptoms did/do you have?
Of course as a baby I didn't have anything symptoms to prove that there was a problem or at least I couldn't tell you. Whilst the shunt is working there is no horrific symptoms, just a mild pain down the tubing (a shunt is basically a tube going from my head through my body Into abdomen. They always put extra tubing coiled up in my abdomen so that when the child grows it was just uncoil and grow /stretch with them) otherwise it will block.
When it blocks there are horrific symptoms.
First you get the worst headache/migraine you could ever think of.
Then you start continuously projectile vomiting.
The shunt actually turns red (you can see the shunt in me) you go very drowsy and a very high fever.
See the signs and it's a shunt malfunction.
The shunt is in three sections so it doesn't necessarily mean the whole shunt needs to be replaced.
If they find out it's only one section, they will only replace that section.

Is it hereditary?
There is no medical evidence to say is this hereditary.

Is surgery required?
Every time there is a short malfunction you need emergency brain surgery, either complete or partial.

How is it treated?
I don't need any treatment for the Hydrocephalus, apart from the surgery is when required.
Hopefully I will need to have my shunt replaced again since it's very unlikely it will block off since I'm fully grown.

What is the prognosis for the future?
As far as the hydrocephalus is concerned, my prognosis is the same as any other persons ..... If you read my other paragraphs you will see why that's not completely true

Condition 3 - Hemiplegia

When were you diagnosed with hemiplegia?
My parents was told about the hemiplegia when they were told about me having the hydrocephalus.
The doctor stated
"your daughter has a condition called hydrocephalus which is going to leave her with the hemiplegia down the right hand side of her body, but We cant tell how severe it is going to be"
The doctor told my parents that I probably wasn't going to walk or talk or go to mainstream school.
As far as those milestones go, I have completed all of them.

How was a diagnosis made?
The diagnosis was made firstly when I was only a few hours old but it really has just been a case of how life has developed for me.

What symptoms did/do you have?
I have a right-sided hemiplegia due to the build up of pressure on the left side of my brain.
Going on how the brain works this means that my left eye was damaged, my right arm and my right leg.
This is because the left side of the brain controls the left side of the body until you get the shoulders and then it flips and switches over to control the right side of the body and vice a versa.
When I was a baby my right arm was clenched against my body so it took two people to dress me one to gently move my am and the other one to dress me.
I've had physio since and now my right arm isnt clenched but I can't do anything with it or at least very, very little.
It's funny sometimes, my right arm tries to mimic my left arm is doing but doesn't quite succeed.
This means I cant even completely do the basic of tasks such as dressing myself bathing myself and cooking.
I can't walk far and I walk with an altered gate.
Because of the problems with my left and right side I have two completely different shoes sizes, 4 and 6 therefore everytime I buy a pair of shoes I have to buy two pairs and literally throw the odd shoes away meaning I'm just throwing money in the bin.

Is it hereditary?
No it is not hereditary

How is it treated?
I used to have the physio but now I have no treatment for it.

What is the prognosis for the future?
The prognosis for the future is I'm going to get a dual award assistance/guide dog to help me and i want to get employment.
Condition wise I'm not going to get any better or worse

Condition 4 - Sight Problems:

When were you diagnosed with sight problems?
My parents were told at birth again when they were told about the hemiplegia and the hydrocephalus but I would have sight problems because of what happened with the pressure in the brain.

What type of sight problems do you have?
My left optic nerve has died and my right one has only have limited vision.

How was a diagnosis made?
I think because of the amount of pressure in my brain, it was obvious to the doctors that there were going to be problems but to what extent they didn't know

How is this being treated?
I'm not having any treatment

Is the condition stable or will your sight become worse?
I personally think its getting slightly worse

Do you wear glasses?
If so what type?
I wear one contact lens, there would be no point wearing one in the other eye.

Is it hereditary?
No it is not hereditary

What caused it?
The pressure build up in my brain caused it.

Is surgery required?
No surgery is not required