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 Proving the surgery was worth it

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Heidi
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PostSubject: Proving the surgery was worth it   Tue Jul 03, 2012 5:10 pm

This year I celebrate my 24th year of having IIH, even though it wasn't diagnosed till the year after it started. In that time I have like many of you gone through all the processes of medication, lumbar punctures, upped medication when necessary, to eventually the LP, VP and LP subcutaneous shunts, even a VP and LP shunt together, shunt revisions, shunt infections and the bilateral sub temporal decompressions, until finally a VP shunt added to the blateral subtemporal decompressions. In total I've had about 22 neuro surgeries and most of them done in a two and a half time period.

Three years after my last VP shunt was put in, I've had two appointments with my Neuro-Ophthalmologist and had all the usual vision fields tests, eye tests and photography done, and been told both times that my optic nerves are pink and healthy, my vision stable but more accurate, and my IIH stabilised. So although I still have the tunnel vision and lack of depth perception, coupled along with my mobility problems since the first LP shunt, I would say it has all been a roaring success.

My life may not be quite what I imagined it would be at 43, my health isn't 100% and neither is my mobility, but I'm not blind, and I am able to have a decent life considering all that has happened. It's been a long wait to be told that your vision is stable and that the back of your eyes are not being punished by csf pressure, to even be symptom free, but it has been worth all the surgeries and everything to get to this point.

So what positives do I think have come out of all this? Well, I can help many of you going through the same things, by giving you practical advice based on my experiences. I know where you are all coming from and why. I can help provide you with the information and tools that I never had at the beginning.

I've hated my IIH and I've battled it like the nemesis it is, but it has led me to all of you, and by it's own merit, I have been able to meet some inspiring, determined and caring friends.

Heidi Very Happy
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MegClever
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PostSubject: Re: Proving the surgery was worth it   Tue Jul 03, 2012 9:08 pm

Thank you for this post, I really need your positive message today. I am lying here recovering from a brutal LP this morning and in need of positive vibes.

Smile
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Wylee
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PostSubject: Re: Proving the surgery was worth it   Wed Jul 04, 2012 11:05 pm

Heid, yours is such an awe inspiring story, that it seems only natural that it should be you who is our leader. Besides all the first hand knowledge that you have gained, your understanding, compassion and unwavering determination gives us strength to keep going too. Perhaps we are a bit of what has been waiting for you after that one door closed and another opened. I cringe whenever I hear all that you have been through, but am so grateful that you are here now, and in a better place too.

congrats woohoo Thumbs up thank you ;)
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