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 Charlie - diagnosed with IIH and Chiari Malformation 2007

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PostSubject: Charlie - diagnosed with IIH and Chiari Malformation 2007   Thu Mar 19, 2009 5:41 pm

“My Story”

Well here goes I have started this so many times! One I finished and deleted by mistake when I was happy with it ARRGH. Better luck this time!!

It all started about 2 years ago when I went to see my GP about my head aches. Coincidently I also had back ache so she referred me for physio. It solved the back ache but not the head ache. Now, I’m not one for moaning so I ignored it. I’d take regular pain killers and make sure I drank plenty! I actually thought I had a caffeine addiction! I also started palates maybe it was bad posture? That was good for posture but awful for the head aches!

Now Forward to Feb ’07.
My husband and I met some lovely people who invited us for dinner! What a blast, they made me laugh so much……….. I thought my head was going to explode – literally! I had to keep excusing myself and going outside to take a breather. Then when I returned inside I feel asleep on their sofa – how embarrassing in someone else’s house at a dinner party!!!
When we got home my husband asked what was wrong. It was time to tell him how bad I was feeling. His response was “you need to go to the doctor, its not right if you can’t have a laugh without being in pain” he was right.

So off I went back to the GP. She referred me to a neurologist. He sent me for an MRI.

April ‘07
I returned for the results….. “We can’t see any problems, its clear.” To me that was bad news, I broke down in his office. “I’m not making this up” I told him. “It’s not a ‘normal’ head ache. I get those too, these are different. It’s like my head is in a vice and its going to explode. It happens if I cough, laugh, sneeze, cry or get up too fast or bend down too fast”.
He decided to go and ask his colleague and he left the room. When he returned he checked my eyes. They were ok.
“Right” he said “you have a slight Arnold Chiari Malformation, but not enough to warrant surgery. But there is something, its nothing nasty it could be a cholesteatoma (layers of skin that grow inside the ear canal causing hearing problems and facial paralysis). We’ll do a CT scan.” In the mean time he put me on a very low dose of Amitriptyline (antidepressant) which numbs the nerve endings in the brain. (I was not depressed, just desperate!)

I received a letter saying the CT was had similar abnormalities and I was to return to the consultant.

Oct ’07
When I was driving home from a holiday with my children I noticed a distortion in my peripheral vision. So I made an Optician appointment when I returned home. I had not been for four years!

Nov 12th ‘07
Back in the consultants office. Having done some tests on my ears they decided that the mass was probably something I was born with and it was not characteristic of a cholesteatoma it was the other side of the main inner ear and did not have the characteristic ‘layers’. The consultant said I was suffering from migraines and I should try to workout what triggered it so I could eliminate the cause! I was not convinced but they are the experts, what would I know? So I told him I was going to the optician and was this relevant? He said no! You need to get your eyes tested probably nothing.

Mon 19th Nov ‘07
At the Opticians I sat in the chair hoping to get some glasses then the head aches would go away. How wrong! He looked into my eyes and told me to take this referral letter and go down the road now to my GP surgery and demand to be seen immediately by any doctor that is available. I asked why. He told me that I needed to be seen by a specialist because I had haemorrhages in my eyes! (That scared me!)
I ran down the road into the reception of the GP and asked whilst shaking to see my GP. She was not on duty but by then I was in tears and they could see I was desperate!
My GP saw me straight away, calmed me down and said she was going to ring the hospital then she would call me back on my mobile! She did, 20 minuets later I wasn’t even home yet! I was to go to the ophthalmologist at 8.45am the next morning.

This is where it gets fast!!!!

Tue 20th Nov ‘07
All morning they did visual tests. By now I had double vision – BAD! And I was developing an area of blindness that looked like a puffa fish. It seamed to flash when I closed my eyes like sparklers! I was becoming popular in opthalmoligy, loads of doctors and students wanted to look into my eyes! Believe me I liked looking at some of them too, you know what I mean!!!! And there was two of everything and everyone including dishie young medical students!!! (I’m married but no harm admiring!)
By lunch time they escorted me to neurology. (Exactly where I started earlier in the year!) My mum was with me and we sat in the office in front of two doctors and a student who all took in turns to look into my eyes! (felt like the firing squad!) They reassured me and told me they would have me admitted and they would get to the bottom of this. Now I was afraid. I looked at the consultant and said “I told you so! I’m not making this up!!”
That afternoon I had a CT scan.

Wed 21st Nov ‘07
I had an MRI scan in the morning. The doctors were looking in my eyes and doing neuro observations on me regularly. There was lots of head scratching and discussions with doctors at a specialist neurology hospital.
This is where it gets really scary!
They wanted to do a lumbar puncture but could not proceed because my Arnold Chiari Malformation made it to risky. So they wanted to transfer me to the specialist hospital the next day. I still had no idea what was wrong. However my eyes were now changing FAST. I now had papilledema. Indicating high pressure. They had to act fast it seems because before I knew it there was a stretcher and ambulance waiting for me! I didn’t have time to even call my family!
Now I was really frightened, 105mph, blue lights, sirens, help! I’m on my own and I’m sh**ing myself!!
Straight into HDU, monitors, machines, nurses, doctors, me, scared!! Diamox, big dose.
“We have to do surgery in the morning to insert an Omayar Reservoir in the top of your head to enable us to release the fluid. You have Benign Intracranial Hypertension!” The Diamox was too late. They had to save my vision now. I was going blind, oh bl**dy hell!

Thursday22nd Nov ‘07
Morning- Tests, MRI, CT, Visual Fields and photos of the back of my eyes. Now I could see (just about!) what all the fuss was about, my optic nerves were a mess! My left one had completely disappeared it looked like a placenta!
Operation day- My mum and husband were there. A long wait.
I don’t remember much after the operation.

Fri 23rd Nov
More tests but the pain had gone! I felt like I’d had a face lift it was uncomfortable but I realised how much pain I had been in! Wow I coughed and no head ache, a miracle! I still had my ‘puffa fish’ and double vision but I could still see! I tried to get out of bed to use a commode and lost my balance so I had to have a catheter! Ah relief cos I was busting for a pee!
6pm they attached the Omayar reservoir to a monitor to record my pressures.

Sat 24th & Sun 25th
Continual monitoring. It was supposed to be below 15 but it was mostly in the 20’s and 40’s. Then Sunday night the nurses woke me and were doing their neuro observations on me my pressure was 61 and still rising! Strange though because it was not the worst headache I’d ever had and I was sleeping! So I wonder what it would have been at its worst?????

Mon 26th Nov
The doctors were not happy with the results. So I was to have a VP shunt put in the next day. They decided they could attach it to the Omayar then to a valve behind my right ear then into my abdomen ending below my diaphram. This would be my relief, pain free at last.

Tues 27th Nov
Operation day! I wake up after the operation and I’m out of HDU. I must be better. But I was in so much pain, I felt sick and was sick. I was dizzy every time I moved. By now I was on so many drugs I lost track of what they were all for.

Wed 28th Nov
It hurt every time I moved. I felt sick, dizzy, scared, upset you name it. But I had no head explosion! Worth it! I was given an anti sickness and dizziness drug into one of the three canulas on my hands. I had a reaction, it made me stretch I could not stop stretching! Odd really odd! Then I came out in spots loads of spots like a reaction. More drugs for that - antihistamine.

Thurs 29th Nov
Physiotherapist saw me today to do an assessment. I was very weak and still dizzy. I felt sick when I sat up. I fell towards the physio into her lap and I could not stop myself. I’ve never fallen for a woman before!!! Tomorrow – get out of bed into a chair.

Fri 30th Nov
This bit I hate! The physio came with a stand hoist and a chair with a seat belt that resembled the one in Jim’ll fix it! Remember that? Anyway it was horrible I had to be hoisted from bed to chair – it felt like I was being spun around cos I was so dizzy and had no balance.

From then on I gradually made very slow progress. I got a transfer to my local hospital so I could be closer to home. And then I got home just four days before Christmas! That was odd really odd!! I had weekly physiotherapy which I hated! But I know I had to do it to get more mobile for my children.

Feb 2008
I was admitted following an out patient appointment because of my consistent headaches which were increasing as my mobility was getting better. The more I did the worse my headaches got! So, one more week in hospital, another anaesthetic for ICP monitoring. My ICP was not as high as before although it was erratic so this shows that I’m still out of danger and my shunt is still working. I had every test going that week. Shunt series x-rays, CT scans, MRI’s, photos of the inside of my eyes, blood tests could be more I can’t remember!!

June 2008
Sick, fever, delirious! Thought I had a bug from kids at school. But I got worse and worse. Off to A&E. Ambulance….. back to Frenchay. Shunt infection. Raging temperature 42 even with IV paracetamol and IV antibiotics (they thought it was meningitis). They found a Staph infection. So back to theatre to have the bottom of my shunt externalized out of my tummy into a bag to drain until the infection is controlled. I drained 200ml per day, I’ve no idea if that is normal, but I found it interesting!
Anyway, infection went and the shunt had to be repaired. So back of to theatre! I now have a posh expensive antibiotic impregnated tubing fitted to the valve of my shunt!

Oct ‘08
Here I am now and they have decided that I need the decompression surgery after all and to be honest I can’t wait! If you have got this far and read the whole lot…………. Congratulations!!!!
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PostSubject: A quick update!   Thu Mar 19, 2009 5:54 pm

Its now March and I've had decompression surgery. It was ok. I'll come back another day and write a detailed account of how it went. It was painfull but I've become acustomed to pain! (oo I'm soo hard!! LOL) :lol:

Its 6 weeks post op now I've just had another MRI of my head/brain also this time they did my spine to check for a syrinx of the spine. I have heard of this but its my choice not to resurch too much about it just yet untill I know if I have it or not. I have scared myself in the past with reading stuff too soon!!

I am still getting symtoms like poor memory, fatigue, headaches - although the chiari headaches are easier. Visual problems plus many others that I cant think of right now.
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PostSubject: Re: Charlie - diagnosed with IIH and Chiari Malformation 2007   Tue Jul 21, 2009 2:15 pm

No syrinx :cheers: and many symptoms are easier. Thats not to say I dont still have bad days and some hurrendious headaches but just that I'm having good days too now so that is good.

The decompression surgery took them 7 hours! :affraid: They removed the back of my scull and the top virtibrae and patched me up with bovine pericardium (skin surrounding the a cows heart!!!) I always was a mad cow!! :lol!:

I was in hospital for 2 weeks. In heaps of pain but I have NO regrets. I'd have it again just to have the good days I get now its worth it!
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PostSubject: Re: Charlie - diagnosed with IIH and Chiari Malformation 2007   Fri Feb 19, 2010 6:28 pm

Its just over a year now since my decompression and I'm doing really well. I'm still improving every day.

I have a ful opthalmoligy review next week and neuro the week after that. So fingers crossed it will all go ok. ;)
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