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 Titch - diagnosed 2007

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Titch
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PostSubject: Titch - diagnosed 2007   Thu Apr 16, 2009 9:06 am

Hello everyone,

I was diagnosed two years ago this may. I have been down the root of having lumber punctures every 6-8 weeks to see if I was one of the lucky ones where the IIH goes. But it didn't so I have had the Venogram, & angiogram with the lumber puncture to see whats actually causing the raised cfs fluid.

They found I have what they called a floopy vein . When my csf is high this vein is narrowed. But when the csf fluid is taken away to a normal level this vein comes back up again. This the Neuros think that if I have a stent operation this will reinforce my floopy vein which hopfully will let the csf fluid flow around my ehad & spine like it should do.

A Stent is a small tube of metal. The operation is done under general aneshetic & is a key hole procedure. It is done as a angiograme.

So thats me & my story of my journey with IIH. I look forward to seeing you all around here Very Happy
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Charlie
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PostSubject: Re: Titch - diagnosed 2007   Thu Apr 16, 2009 2:04 pm

Hey a great big :cheers: WELCOME


I hope you find loads of usefull info round here and plenty of support here on the forum. Our aim is to help people LIVE with IIH and to have a place to off load and share experiences but also have a bit of banter about all kinds of other stuff that makes us individuals.

Feel free to ask any questions we always try to pop in here to check out any new post evey day.

From Charlie xxx :flower:
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Heidi
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PostSubject: Re: Titch - diagnosed 2007   Thu Apr 16, 2009 2:36 pm



I'm positive you're going to like it here Titch, and I see you've managed to find your way around our forums Very Happy. I've heard about stenting although I don't actually know anyone who has had it, but what I have heard has been very positive. It sounds a lot less invasive than the shunts, and the recovery time I would imagine is a lot quicker. I bet you're fed up with the lumbar punctures I know I was! Smile I'm looking forward to getting to know you and I'm sure you're going to be a great asset to our group. :cheers:

One of the things we hope to do here is to see you as the individual not just the IIH, so this is why we've included fun things and are open to suggestions of what members want.

Heidi xxx :sunny:
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Titch
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PostSubject: Re: Titch - diagnosed 2007   Thu Apr 16, 2009 3:10 pm

Hello Charlie & Heidi,

Thank you for your lovely welcomes :cheers: Stenting is a new way to help some people with IIH. I had a Aingeograme & a Veinogram & scans of my head with dye & a lp all on the same day :roll: It was certainly a painfull three hours around the hospital before I was put on a ward for four hours without being allowed to get up :roll:

I went to the hospital a couple of weeks ago & found out the results. Because they took my csf preasure down to 8 to be able to see on the scans the difference to my veins with high scf preasure & with the low preasure.

With high preasure a vein at the back of my head on the right was narrowed but when the csf pressure was low this vein came back up. So they called it a floppy vein :lol:

So they asked me how long was it before I had the symptoms return, well I was allowed home the same day & as soon as I woke up the next day my tinitus was back :roll: So they said I wasn't a candidate for a shunt :?:

But they did say I would be viable for a stent. I don't know much but im going to see my Neuro on the 27th so will be able to ask lots of questions I will make a list as you know memory is a thing that we all once had :lol:

As far as I know its a procedure done with a genral anasthetic & its done as a angeograme. They make a small cut in your groin area into a vein. They thread wire up into your head & push the stent up their then its a lot of fiddling about to get it into the right place.

But I will tell you all more when I know more :lol:
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Heidi
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PostSubject: Re: Titch - diagnosed 2007   Thu Apr 16, 2009 3:19 pm

I'll keep my fingers crossed for you, and be waiting for an update. Making a list of questions is a great way to remembering questions you need to ask, so that's a good idea! Then later perhaps you can post them for others so that they have an idea of what to ask should they need a stent, and it also means you've helped someone else too.Hopefully the stent will make a big difference for you, and the irritating tinnitus will go away :sunny:
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Laura
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PostSubject: Welcome!   Sat Apr 18, 2009 7:33 pm

Welcome to the forum! It's lovely to have you here and I hope you continue to enjoy your stay Very Happy

Laura
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Titch
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PostSubject: Re: Titch - diagnosed 2007   Sat Apr 18, 2009 9:08 pm

Hello Laura,

Thank you :cheers:
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Heidi
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PostSubject: Re: Titch - diagnosed 2007   Wed Apr 10, 2013 1:10 am

Welcome back it's great to see you. I will reset your password and email you your log in details and then delete this account.
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