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 Cindy Diagnosed October 2011

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cincin72
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PostSubject: Cindy Diagnosed October 2011   Sun Jul 15, 2012 11:55 pm

I was diagnosed with IIH finally in October of 2011. I spent 4 + years in agony being told it was only in my head because I am also bi-polar. The Drs. just shrugged me off as having self induced headaches from me being bi-polar. Not until a year after it started affecting my eyesight was it finally noticed by my regular eye dr. He sent me to a neurologist and from there it was finally diagnosed after them doing a spinal tap. There is nothing worse than being in pain, not being able to walk, see function, etc and no on believes you. I am a single mom and my kids just could not understand what was happening to me. I wont do a long drawn out intro, but I have had 5 surgeries since Feb of 2012. Four were to do with my lp shunt, and the 5th was to put in the vp shunt in my head. I am hopeful that this last surgery will be all that I have to go through. I had nothing but trouble with the lp shunts, they would fail, get clogged, got twisted and then started leaking. I am tired of all the pills, all the pain and all the dirty looks from people because I have to use a skooter buggy at the grocery store. Just because they cant see my illness and realize I fall for no reason because of balance issues does not mean I am lazy. I get the comments and you just want to yell back but I dont. I want to say hi to everyone here. I hope to share more of my surgeries and experiences with you all. Thanks for listening, Cindy
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medmisfit
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PostSubject: Re: Cindy Diagnosed October 2011   Mon Jul 16, 2012 12:53 am

Hi Cindy, & welcome to the group! It sounds like you've had a rough year, so I 'm glad you found us..if nothing else, it's nice to chat with people that understand. I hope the VP shunt has given you some much needed relief..things should just continue to improve once they find the right levels for you. Let us know if you have any questions, concerns, or successes..we do our best to support one another.

Take care,
Julie
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BananasMom
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PostSubject: Re: Cindy Diagnosed October 2011   Mon Jul 16, 2012 12:09 pm

Hi Cindy! Very Happy Welcome to the group! I'm so glad you found us. This is a wonderful and supportive group with lots of folks who have been there and really do care! I hope you find this site to be a great resource.

I'm so sorry to hear about all you have endured with misdiagnosis, and then the multiple surgeries for the LP shunt. I'm really praying for you that the VP shunt will continue to do well for you and bring some much needed relief.

I think almost all of us here have dealt with people not understanding and/or believing in our illness, and it can be so incredibly frustrating. *hugs* For me, I try to use resources here on this site to educate the people who matter to me in my life ... and as the for the rest (like those idiots who give dirty looks at the store), I just let it roll off. Sadly, many people have a hard time accepting what they cannot see. I try not to waste much energy being angry.

Let us know if you have questions and feel free to rant! We're all here for you! *hugs*
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Heidi
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PostSubject: Re: Cindy Diagnosed October 2011   Mon Jul 16, 2012 4:29 pm

Hi Cindy and a very warm welcome to the group. hug I am so glad you joined us especially after having such a rough time with getting to your diagnosis. It is often so easy for doctors who have little or no knowledge of IIH, to put it down to memory problems, depression or mental issue. It seems they only seem to concentrate on one of the symtoms instead of all the symptoms together. We are hoping to change that in the future.

Remind yourself that these people who don't understand are not people who are important to you, and their views and opinions are not relevant to you. Take comfort in the fact that you aren't alone and there are people who do know what you're going through, and what is like.We're always here for you and will always listen, even if you are having a rant.

Heidi for you
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Cindy Diagnosed October 2011

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