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Jenna_bratterina

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PostSubject: Newbie   Tue Mar 28, 2017 7:04 am

Hi im not sure if im doing this right, sure hope i am. Im Jenna , and my whole life was turned upside down in 6 weeks, before i had a chance to even process what was happening i had to have the VP surgery last Monday. Still quite shell shocked because of how fast the wheels all fell off. I feel like i woke up one morning in someone else's life. I don't know anybody else that has this or that has even heard of this, i live in South Africa. I think though that i was experiencing a lot more before it got to the critical stage it did, i just didn't know it, i didn't know how to say i needed help or explain it. Kind of like at some point i had stopped living but i wasn't aware of it. Am i crazy? Did anybody else have these feelings or experience this?
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medmisfit
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PostSubject: Re: Newbie   Tue Mar 28, 2017 8:00 pm

Hi Jenna, and welcome to the forum! You are definitely NOT alone. I think it's usually a longer process for most members, but life-changing for sure.

I personally was struggling with some other health problems and had no idea until I woke up one morning with big holes in my vision. It took some time and several specialists before they figured out it was IIH. I was completely unraveling and had no idea until I was removed from the situation. I actually had to stop working for awhile and that's when I started to realize how bad things had gotten. I think aspects of it happened so slowly that I adjusted and learned to compensate, until I couldn't.
It also took several years to find the correct treatment, so hopefully you're ahead of the game and finding relief with the VP Shunt!

I know I've seen other members from South Africa, so hopefully they will see your post and have some insight as far as your healthcare system, practices and services as they relate to IIH. But, if you have any questions or concerns, feel free to reach out and we'll do our best to help you through it!

Take care,
Julie
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Jenna_bratterina

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PostSubject: Re: Newbie   Tue Mar 28, 2017 8:42 pm

Thank you Julie, Yes my Neuro surgeon said that to me, that my diagnosis was very quick and due to the rapid loss of eyesight and because i wasn't responding quick enough to the medications, I had to have the surgery. Thank you for your reply xxxx
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medmisfit
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PostSubject: Re: Newbie   Wed Mar 29, 2017 5:51 pm

You're welcome. I'm glad they were able to address the issue so quickly and hope you're finding relief. Let us know if you have any further questions or concerns.
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Sophiasmom
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PostSubject: Re: Newbie   Thu Mar 30, 2017 3:16 pm

hi Julie;
I know it was a shock but I'm glad they jumped right on it and I hope that you have recovery of your vision.  I am more frustrated with situations where the docs don't pay proper attention to the vision loss and it becomes permanent while the patient keeps asking for help.  yes IIH is life changing and getting sick it can seem like all of a sudden your life is irrevocably changed.  your situation seems more sudden than most.  I hope with the shunt that you can get back to your normal though, many people say that.  I've never had one, I'm a lot better with jaw surgery but I will always have some symptoms.  let us know how you are feeling a few weeks after the shunt.
Deb
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