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 Emily - diagnosed 2010

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emily2405
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PostSubject: Emily - diagnosed 2010   Tue Oct 12, 2010 8:19 pm

Hi all
Im emily from London/soon to be essex, im 30 and live with my hubby and my 14yr old son

I have had problems with my eyes for many year which is usially controlled by new prescriptions on my glasses
in 2005 i was sent to see a specialist in my local hospital because i was getting horrendous headaches. I was given a MRI and CT and various visual field tests
I was basically told my eyesight was failing but i am fine, I knew there and then i should have looked for a second opinion but just went with what i was told (im not a doctor afterall)

anyway ....
in august of this year my headaches were getting worse and i began to see black spots and had a whoosing in my ears my eyes were getting alot worse too
My GP refered me to moorefield and was given many more visual field tests, Within a week i was in the national hospital for neurology and neuro surgery and was having my very first Lumbar puncher it was the worst experience of my life lol after many attempts the doctor finally got the spot (and hit a nerve) my reading was 47 which managed to get down to 16
the headaches wernt as bad and the whooshing had gone but my back was bloomin killing me
after a week or so the headaches come back with avengence and was back in the NHNN and diagnosed with IIH and also seconary optic atrophy
i have been given diamox and suffering slightly with the weird tingly side affects and can no longer enjoy a nice cold fizzy diet coke because of a metalic taste it gives me lol

My surgeon wants me to meet a brain surgeon in december to talk about shunts and im worried sick if im honest
and finding things really hard to cme to terms with

thank god for the internet and sites like this and sorry for the long winded post
xx
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Laura
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PostSubject: Re: Emily - diagnosed 2010   Tue Oct 12, 2010 11:54 pm

Firstly, a huge welcome to the group!

I'm sorry to hear you had a shocking first time with a Lumbar Puncture, hopefully if you do have this treatment again it won't be as bad and involve hitting a nerve!

My mum has had a fair few shunts so she will be able to put you at ease on this subject as she has a wide based knowledge on them along with medication and surgeries. I would suggest talking to her, my mum is the site founder and owner, Heidi.

I hope you are doing well and hope to read some more of your posts! Don't be a stranger!

Laura

xxx
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emily2405
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PostSubject: Re: Emily - diagnosed 2010   Wed Oct 13, 2010 6:25 pm

Hi Laura and thank you for your kind welcome xx
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Heidi
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PostSubject: Re: Emily - diagnosed 2010   Wed Oct 13, 2010 6:43 pm

hug Hi Emily and welcome to the group, I'm so glad you joined us. I'm so sorry you have had such a rough time, it always seems for a lot of us, that we go through a rollercoaster ride up to a firm diagnosis. I understand how worried and anxious you must feel about having a shunt, and it's perfectly normal. I felt the same way when I was told I needed a shunt for the first time.

I'd be very happy to chat to you about it anytime, just pm me and we can talk about it that way or pm me and let me know if you wish to chat in the chatbox about it sometime. To be honest with you, having a shunt put in, sounds worse than it actually is, but they are effective, and are a good long term solution when your IIH isn't responding to medication alone.

Heidi for you


Last edited by Heidi on Wed Oct 13, 2010 7:59 pm; edited 1 time in total
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emily2405
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PostSubject: Re: Emily - diagnosed 2010   Wed Oct 13, 2010 7:39 pm

Thank you Heidi
would love to take you up on your offer xx
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