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Aliviamom11
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PostSubject: help !!   Wed Dec 12, 2012 5:31 am

Today i go for my surgery consult..im nervous aboutt the vp shunt. I have been having los of pressure in my ear i can even hear myself blink. I havebeen vomiting uo my guts despite the nausea medicine. I just feel so lost. I used to have the answers.


marlana
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sammyjo
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PostSubject: Re: help !!   Wed Dec 12, 2012 9:54 am

good luck huni i feel ur fear i have my op tomoz and i am properly scared x xgood luck babe x x
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Betsy
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PostSubject: Re: help !!   Wed Dec 12, 2012 2:47 pm

Good luck!
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medmisfit
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PostSubject: Re: help !!   Wed Dec 12, 2012 6:58 pm

I hate that pressure! You've been struggling for so long I think you'll be surprised how much better you feel. I had a shunt revision done in April and my family about fell over because I was sitting up and talking in recovery. That's actually the first thing everyone noticed..I was sitting up. My shunt was overdraining, so I had low pressure headaches every day for three years..I only got relief from laying down, so that's where I stayed anytime I wasn't working. I was sore after surgery, but I remember telling my Mom that my vision was clear and my ears didn't hurt..I felt amazing even after just having major surgery! It's absolutely terrifying, but I think the majority of us find that it's no worse than what we've endured with IIH. I hope you relief soon!

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Julie
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sammyjo
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PostSubject: Re: help !!   Mon Dec 17, 2012 5:17 pm

i know VP shunt is diffrent from LP shunt but i had my shunt 4 days ago and its the best thing i ever did i feel so much relife dont get me wrong my tummy is very saw but my eyes head and ears r amazing x
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Sophiasmom
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PostSubject: Re: help !!   Mon Dec 17, 2012 8:56 pm

Dear Julie;
I love your story but the only part of it that upsets me is that at least in my family, the only reason they were so amazed at how well you were doing is because in their minds, prior to the shunt surgery, you were (and I am) really faking it and not sick at all. they were amazed because your recovery belied their mistaken abusive impression. this whole illness and the response of others to us and the way they trivialize us has me very pissed off.
sorry.
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PostSubject: Re: help !!   Mon Dec 17, 2012 9:06 pm

i am right there with ya Sophiasmom the way people under play our condition my family still even after the surgery dont seem to get the extent of IIH.
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medmisfit
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PostSubject: Re: help !!   Tue Dec 18, 2012 3:18 pm

I complete understand Deb, but I am one of the lucky ones..my family really does understand. They can physically recognize changes in me and have watched me suffer for decades, so they get it. Don't get me wrong, I've lost plenty of family and friends that didn't understand..I learned long ago to cut them from my life. They either come around or I'm better off without them. All that negative energy just adds to the stress, which increases symptoms..I don't need it. I'm sure I'm a real B#%@* in some circles, but I quit caring about what those people think long ago. I mourn the loss, but try to live in the present as much as possible..years of therapy, prayers, and meditation have definitely helped! I hate my life some days, but it's the supportive people that get me through..I am VERY blessed!
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PostSubject: Re: help !!   Tue Dec 18, 2012 4:07 pm

I know where you're all coming from, I think most of us have or are in the same position. The main thing is to push through it and think of yourself. I've had LP shunts and I've had and still have a vp shunt, and have had a vast improvement with them. Keep telling yourself that everything you go through with surgery, is going to help you resume a better quality of life.
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Sophiasmom
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PostSubject: Re: help !!   Wed Dec 19, 2012 2:09 am

hi Julie, I think I do know that your family is pretty good, you are one of the fortunate ones. what I've got is an evil mom, a narcissistic husband, and an autistic father. my best friend (for the last 30 yrs) asked me a few months ago if maybe I thought some of my illness was all in my mind. my brother is caught up in his own anxieties and is unable to be empathetic or even help out a little without throwing in the regular guilt trip for what he did do. on thanksgiving I had a bad headache and was really tired with brain fog, and when I asked my husband to wash a dish he told me he didn't feel like it and stayed on the couch. he is obsessed with the idea that I would be a nicer person if I went to some intensive week long therapy session. he watched my spinal taps and so he knows better than anyone that there is a biological problem, but he just doesn't get it. I have had more docs than you could know (well you probably do) tell me things like I just need to find the right antidepressant. it's all BS and I am pissed as hell because I know that if this disease affected men as regularly as it does women, there would be nothing "idiopathic" about it; we would KNOW what causes it and have a cure, period. I am completely isolated from society by my chemical sensitivity and pretty much the only people I talk to regularly are my friends with IIH who I met here on this forum. no one else understands what this feels like. like you, I don't feel obligated to be friends with people who just don't get it. so, do I have a bad attitude? am I depressed? so what if I am? as far as I'm concerned, it's justified.
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medmisfit
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PostSubject: Re: help !!   Wed Dec 19, 2012 4:52 pm

Feel free to PM me anytime Deb. I do understand your pain and frustration..it's a horrible place to be!
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PostSubject: Re: help !!   Wed Dec 19, 2012 7:37 pm

thank you Julie, that is sweet. I'm a little raw lately for some unrelated reasons that I'm not talking about on the forum right now, so sorry for my rough edges. my coping mechanism has been to go completely into my intellectual side and so I don't really feel like I need more than I have right now. I'm just angry about how icky I think most people are. I am completely fine being alone and not dealing with them at all. it's just our society has become so complicated that I am forced to. having kids I have to go out into the world. I am intensely motivated to change the way people think about our illness, to shed light on what I see are big black holes in our knowledge about it, things that seem very clear to me. I know the right people to approach, I have the skills to write about this intelligently and get my point across. these are the things I will tackle in the next year. there's a fire under my A--. I might make some people uncomfortable, but I am not going to wallow in this. so yes I am frustrated and need to vent at times, and I may take you up on your offer to let me do so, but for the most part I have a plan to use that energy to acheive some good things for our cause. right now it just looks like all I'm doing is running around in circles on the battlefield waving our flag, but there's more going on in my head.
Deb
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medmisfit
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PostSubject: Re: help !!   Thu Dec 20, 2012 2:18 pm

I understand..take care!
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