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 Helen Louise Diagnosed 2011

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helenlouise
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PostSubject: Re: Helen Louise Diagnosed 2011   Tue Mar 19, 2013 10:01 pm

hiya everyone im new on ere and im so glad ive found this site while searching google...i got diagnosed 2 years ago with iih and narrowing of tranverse sinuses..i had been going to my gp complaining of headaches for 4 years to be told i had aniexty,depression and migraines i then went to the optician when i noticed my sight was going they sent me to the hospital has i had massive amounts of fluid behind my eyes i was then given a brain scan which ive never been offered ny my gp may i say..i have been to cambridge and had stenting surgery through my jugular veins into my brain twice and ive had a left optic nerve sheath venerstration still not helped im still having regular lps with raised pressure and i take diamox,topiramate,cyclizine and naproxen...i really do think doctors need to be made more aware of our illness im 24 and lost 82% vision and will eventually go blind but can we really complain?? because all i seem to get is how rsre my condidtion is,is any1 else the same? thank you for reading my story Smile xx
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PostSubject: Helen Louise Diagnosed 2011   Wed Mar 20, 2013 9:19 am

Hi helenlouise! Smile Welcome to the group! I'm so glad you've found us! So sorry to hear about all that you have been through with your IIH and that they have not been able to do more to help you, and to save your eyesight. Like Wylee, I'm wondering if a shunt has been considered in your case? *big hugs* I have a daughter just a couple of years older than yours, so I can relate to the challenge you face in dealing with all of this and raising a little one. I look forward to getting to know you better!
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