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 Josie diagnosed 2002

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PostSubject: Josie diagnosed 2002   Tue Sep 04, 2012 1:23 am

My name is Josie. I am a 34 yr old married mother of 2 whose life was turned upside down in the fall of 2002. I was pregnant with my 2nd child. A girl this time! During my early weeks of being prego I started to get these really nasty headaches. I went to my OB and they said it was probably just migraines, so they prescribed me some meds and sent me on my way. Weeks went by and I was still feeling really bad. Throwing up all the time, headaches, just awful. I went in again and they sent me to a neurologist. I remember her going through her usual exam, reflexes, strength, ect. Everything was seeming to be fine. But then she got to my eyes. As she looked with her light behind the eyes, she just kinda paused. "Hmmm" she said. Then she flipped the lights on and said " I think you need an MRI. I think you have Pseudo Tumor Cerebri." She picks up her phone and calls. All that is going through my head of course is Tumor. Little did I know that (in my opinion) this was worse then a tumor. That is how it all started.
So during my pregnancy I had spinal taps to relieve the pressure. I was induced a few weeks early because my pressure was rising again and they were worried about my eyesight. But then as soon as it appeared, it dissapeared. I had almost no symptoms for years. I thought it was all behind me. Then in 2008 my headaches came back. With a vengence. I was on all the meds, was hopspitalized more times then I could remember. Finally, I was begging my neurologist to explore more options like a shunt. My quality of life was so far down the tubes, that if I did not have my children to live for I honestly would not be here today. I was in hell. So after going through 3 different neurosurgeons, that last one agreed to do an LP shunt. The first 2 refused because I was not having problems with my vision. Just the headaches. But the third one understood what I was going through.
So in Jan of 2010 I had an LP shunt placed. I was in the hospital for over a week. Recovery was awful. It was hard adjusting to a normal pressure because I had been at a high pressure for so long. Finally after 2 months, I started to feel like a real person again. I felt I was cured I guess. I was doing normal things, no headaches ever, and enjoying life!
In August of 2011 I started to feel some pressure behind my eyes. I got into a neurosurgeon right away and they felt that my shunt was probably clogged. So back in I went for a suprisingly quick revision. They just had to fix one part. Open one scar. All was good again.
So now to the current. I am still recovering from another revision done just recently in August of this year. This time I crashed hard. I started not feeling good like a cold. Then the headache came. By the next day I went into the ER and they admitted me. 2 parts were not working this time. I was in the hopspital again for a week. Longer recovery. Just getting back to work last week.
I think for a long time, I was in denial I had this horrible condition. Even after I had my shunt placed. I felt fixed. Like it never happened. But now with the 2 revisions under my belt, I have come to the realization that I do have this. It will always be with me. It is not going to be Cured. I need to start dealing with it. Learning about it. Connecting with others who have it. Join in supporting others. Spreading the word all I can about how we need to research it more and find a cure. Just like Cancer.
So, this is why I am here. To be part of a group that I can relate with. To laugh with, cry with and support with. Thank you all for listening!!!
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PostSubject: Re: Josie diagnosed 2002   Tue Sep 04, 2012 3:08 am

Hi Josie,


You have had some ups and downs for sure. I was diagnosed almost a year ago and have no experience with shunts so I cannot speak to that aspect. There is much information to know about them.

I know what you mean about having kids and "if it weren't for them"....Honestly, the pain and horror of this condition is something nobody understands truly unless they are going through it.

I still hope that this will be cured. Never give up Hope!

I just wanted to welcome you and say hello.

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PostSubject: Re: Josie diagnosed 2002   Tue Sep 04, 2012 5:12 pm

Hi Josie, and welcome to the group! I'm sorry you've had such an ordeal, but glad to see you've been able to persevere and return to work. It's definitely not always easy, but manageable w/ some occasional adjustments. I'm glad you found us and look forward to getting to know you. Take a look around the site. You can PM any of the Moderators or Admin Team w/ any questions or concerns.

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PostSubject: Re: Josie diagnosed 2002   Tue Sep 04, 2012 7:36 pm

Hello Josie,

I've got 2 kiddies as well. Its tough to handle being poorly and having little ones.

Welcome to one of the friendliest groups I've found Smile

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PostSubject: Re: Josie diagnosed 2002   Wed Sep 05, 2012 12:11 am

welcome Josie.

You are on your way to a better situation, can hear it in your words. Yes, we all hope maybe this last tweek will be the last, but getting used to needing just one more...............but maybe, just maybe, one of these times it will be the last tweek. We can all hope so!!

Your team of docs sound like real keepers. They are listening to you and taking good care of you. Sometimes we do have to keep trying out different ones, like you did with the neuros until you found a compassionate one. Now that you have, keep him on file but maybe towards the back, where you keep the numbers used less frequently. :roll:

Good to have you onboard, and I hope you will stick around, especially to help reassure our newbies.
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Josie diagnosed 2002

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