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 Hi I'm Jay my wife has IIH

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PostSubject: Hi I'm Jay my wife has IIH   Tue Feb 16, 2010 6:45 pm

My wife has had IIH since 1989, but when we met she had been in remission for about 4 years. Unfortunately 2 years after we married her remission ended, and she had to have an immediate shunt, as her eyesight had reduced significantly, and she was weeks from going completely blind.

After having her LP shunt fitted, we went through a very difficult time, as the LP shunt affected her mobility so badly, she wasn't able to walk far, or do any of the things she did before, and she had lost her peripheral vision and depth perception. This became permanent, she's registered partially sighted, and she now walks with a stick, even though the shunt was removed early 2006, to be replaced with a VP shunt.

In the last 4 years she has had 17 surgeries, and at one time had 2 shunts, a VP and an LP shunt, but again the LP shunt affected her mobility so severly she couldn't even sit properly, and then it was removed, and they tried one that didn't go directly into her spine, but it got infected.

Now, she has a VP shunt, and 2 subtemporal decompressions, and is also on co-amilofruse, and her eyesight is stable. She has good days and bad days and can't work anymore, but she has kept her humour. I've found it very hard at times, especially as we had a scare when she went into a coma, and I was told to prepare for the worst. That was the worst time in my life, seeing her like that and not being able to do anything, and trying to be brave for our daughter.

The thing that makes me laugh is that after all she's been through, the one thing that has brought her down is her weight, which has gone up through the steroids and medication she's on. I suppose that's women for you!

I do most of the things in the house now, as well as working full time, and although I know my wife feels guilty she can't do more, the fact that she is still here, and her health IIH wise, is not as serious as it was, is what makes me happy. I tell her it's not just her illness it's mine too, and that if the boot was on the other foot she would do the same for me.

I won't lie and say it hasn't been hard, because for the most time, it's just been me, her and our daughter, with no other support or help, but we've stayed strong, kept laughing and practical to get through it all. I think because we talk about everything helps, and I've been involved in every aspect of hospital appointments and procedures, so I am always informed so I can give her my full support and attention.

We've been married 12 years, and been together for 13, but for 10 of those years, we've had a battle with her health and other things, but I know now when she's got headache, or doesn't feel too well, I've learnt to recognise all the symptoms.

No one ever thinks about how a husband feels or what they're going through, so joining this group and meeting others experiencing the same problems etc would be great!
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PostSubject: Re: Hi I'm Jay my wife has IIH   Sat Mar 13, 2010 6:15 pm

Thanks for posting your story Jay, I'm sure that there are partners of IIH sufferers out there who will be pleased to be able to share their experiences with you, and give you plenty of support.

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