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 Hello - diagnosed July 2010

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VPShunter
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PostSubject: Hello - diagnosed July 2010   Sat Jan 29, 2011 9:53 pm

I just found this group today and joined, I have IIH and have had headaches for several years along with declining vision but was not DX until July 2010 After lots and lots of testing which I am sure every one who has this illness has been through and 3 Lumbar punctures, failure on Diamox, Diamox Sequals , Lasix and Topamx. With Bilateral 4+ paps impared vision color test, some vision loss, Daily Headaches, Pressure, eye pain, Neck pain, fatigueit was decided that in Oct 2010 I was having my first VP Shunt placed. That shunt failed and I had to have a new NP Shunt placed on December 20. So far I know its working... Its not perfect. I am back to work full time in a medical office but i find gettting the setting correct on the programable shunt is no easy task. I still have daily eye pain, headaches every day but not as bad as before the shunt. and still with neck pain when my head hurts. So I am just trying to learn to live my life with a shunt. I do go to the Neuro Opth soon and that should help us to know how much pressure i still have and how the paps are doing.

Thanks for this forum, I look forward to being an active member.
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Heidi
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PostSubject: Re: Hello - diagnosed July 2010   Sat Jan 29, 2011 10:10 pm

to the group hug. I can relate to the frustration and everything you must have had over all that time, and I bet like me you thought, once the shunt was in, things would go back to normal and you'd be able to just get on with things. It's so crap when it doesn't happen that way, because everyone else expected the result to be instant too.

I had the same problem with my first VP shunt which was a programmable one, I ended up with one that's is just permanently set in the end. I'm so pleased that yours seems to be working well, and I'll keep my gingers crossed that it doesn't change. Are you still on Diamox or anything, or is it just the shunt now? Hopefully things will settle down for you soon.

Feel free to PM or email me anytime, and if you ever want a chat with me in the chatbox let me know, and I will pop in there.

I look forward to getting to know you and reading your posts, and I do hope you like it here and have a permanent home with us.

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PostSubject: Re: Hello - diagnosed July 2010   Sun Jan 30, 2011 1:10 pm

Thank you Heidi, Its been a very rough road so far with this shunt. The problem i seem to be having now is getting the setting right. and the Barametric pressure changes seem to bother me a lot.


You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.
Eleanor Roosevelt
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Hello - diagnosed July 2010

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