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 New To this Community diagnosed June 2012

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girocks
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PostSubject: New To this Community diagnosed June 2012   Mon Jan 21, 2013 7:43 pm

Hello from Winnipeg Canada,
I was diagnosed with IIH in June 2012, and my summer was a whirlwind. I was at my neurologists for a follow up after telling him of my eye going blind he noticed I had papilledema. I was sent to our trauma centre hospital, where I was greeted by a team of neurologists. I had the first of my many LP's, where my opening level was 30. I was admitted and got my first low pressure headache after my LP's. 10 days in (after being on Diamox 4000 and Lasix 80mg), I had to have a right eye sheath fenestration to save my eye. I got discharged 4 days later. Things did not get better, and 4 weeks later, I had an emergency LP shunt (this was on the August long weekend). Six weeks later my LP was totally blocked. I had a shunt patency test, where they add radioactive isotopes into your body. It was blocked and 3 days after that I was under again, getting my VP shunt. During this surgery I had my NS take out the LP shunt. I lost a good amount of blood, but it was worth it, since my back, hip, neck pains are gone.
I am now 15 weeks post-op, I have permanent right eye peripheral damage. I have many scars (Playboy cancelled their photo shoot with me lol), I am off Diamox, and I am alive!
Thanks for this forum, I thought I was the only one suffering!
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Wylee
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PostSubject: Re: New To this Community diagnosed June 2012   Mon Jan 21, 2013 8:36 pm

And from a much warmer than you North Carolina, welcome2

Sounds like you have had quite a bumpy road. Too bad they were not able to save your vision, but I am glad it is not complete loss. I am sure you are keeping a close eye on your eyesight now. Keep those ophthalmologist appointments coming.

Sometimes it is indeed necessary to do the vp shunt, but I am very pleased that your docs did not start there. They did the logical progression. Good for them. That is one team worth keeping!!

Looking forward to chatting with you again in the future. Feel free to drop by any time.
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Tanker8
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PostSubject: Re: New To this Community diagnosed June 2012   Mon Jan 21, 2013 10:31 pm

How was your Optic Nerve Sheath Fenestration? My neurosurgeon want me to look into that route before getting at shunt. Have been on med for two years with no luck. I had last LP was just before Christmas and it was 36. Had a bad eye check up just before that too. My right eye getting worse all then time.
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girocks
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PostSubject: Re: New To this Community diagnosed June 2012   Tue Jan 22, 2013 7:00 pm

Thanks Wylee,
I definately have a great Neuro team! My neurologist never gave up on me, and fought to find out what was wrong with me. My NS is such a great man as well with a bedside manner to boot! Yes it's a bummer that I loss vision, but as you said it's not a full loss!
Tanker8- My optic nerve fenestration went well (as in operation), but it did not resolve my IIH and the pressure. I had to have a LP shunt put in 4 weeks later, and 6 weeks after the LP shunt I had to have the VP put in.
Hoping for some warm weather here in the great white north!
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