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 Rachel diagnosed 2011

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Rachel Amelia
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PostSubject: Rachel diagnosed 2011   Mon Jan 28, 2013 7:05 pm

Please prepare yourself for my novellla.
I'm Rachel, a 24 year old radio broadcasting student from Ontario, Canada. In September and October of 2011, I was having some eye aches. A year before, I had seen the eye doctor who had declared that I had the early signs of glaucoma, and I figured that a year later, perhaps my eyes were deteriorating, and that they were sore and achy die to a developing glaucoma problem. By mid-October, I had decided that I'd had enough, and went to my school's health services to have my eyes looked at. They looked at them, and were super concerned, and sent me to an emergency room. I really thought nothing of it, as I knew, it was a developing glaucoma problem. I was seen almost imediatley at the emergency room, a CT scan was done of my head, and my concern at the situation grew rather quickly, as they told me they were looking for a brain tumor. At the time, I was young and naieve, and I seriously, never in a million years thought anything bad could ever happen to me. When you're little and young, and full of life, you're unstoppable. You might have enough grasp of the world to know that bad things happen, but they happen to other people, sickness, and accidents, and terrible things happen to other people, not you. But what alarmed me at the time was their amount of alarm. I wasn't concerned, and every doctor I saw that day was OVERLY concerned. It spooked me. The scan came back, no tumors. The doctor then explaned to me about doing a lumbar puncture, and I was only half listening. I had been there alone, and I was freaking out, completely unfocused. Really, distracted by the relief of not having a brain tumor. After she had some dicussion with her cohorts, they decided to send me to a different hospital, though, without the lumbar puncture. The other hospital had a team of Neurologists, who could properly deal with whatever head problem I was apparently having, that had nothing to do with my achy eyes. At the new emergency room, I was greeted by a team of Neurologists, who performed a lumbar puncture, my opening pressure was 43. It was then that the doctors explained to me my new condition. I was started on Diamox, and sent on my way. This was indeed the worst day of my adult life. (so far, I could have worse ones, am I right?)
Diamox didn't work. I went back to that same hospital 3 times that week, had 3 LPs, pressure was shot back up each time. Within a month, I was near completely blind. Of course that wasn't all, my speech was slurred, my coordination a wreck, my head a mass of pain. I was forced to leave school, and spend all of my time laying in bed doing nothing, seeing no one. Noise, light, people, it was all too much for me. I couldn't cut up my own meals. It was embarrassing to say the least. Leaving school was the hardest on me. My life before IIH wasn't an easy one, and it was a long road finally getting to be in school for radio and chasing down my dream. Most people don't go to school for what they really want to, most people don't chase down their dreams. And I was. And then, I wasn't. I had to walk away from it. It broke my heart. The neruology team decided I wasn't getting better near quick enough to salvage my vision and that action had to be taken imeediatly, and it was decided that I would be placed on an urgent list to have a VP shunt inserted, that it would be the best way to save my vision, if we were going to save my vision at all.
In January 2012, my shunt was inserted. I healed very quickly, and many good things came to me in 2012. All of my vision came back to me. I returned to school in the fall, I worked hard and purchased a car and got my license, all things, I thought would maybe NEVER happen for me. I'd be lying if I said it was easy. At first I was still having headaches, and I hated Diamox, and then I was on it, and then I was off it, and then on it, and now I'm off it, and on Topamax, which is actually working like a CHARM for me. And I was ANGRY for a really, really long time. Angry that I'd worked so hard to be where I was in my life before IIH attacked my life, just to have it all ripped away from me. Angry because, I'm a good person, and I didn't deserve this. But I've been lucky enough not to have had a revision, infection, break in my shunt in over a year. I actually feel pretty lucky. I know other people don't have that easy of a time with their shunts.
Which brings me to present day. My last appointment with the Neurologist was in October, who informed me I didn't need to see him again unless I was having problems. Which is OK, the Neurologist they assigned me is a moron, the Neruo-opthamologist is actually the one who knows what he's doing, the one who has managed me and my medication and condition the best, except, they called me to tell me I have an appointment soon, and he's retiring and moving to the states, and his replacement, who I see in two days is going on maternity leave. It's really just a checkup. The Topamax and shunt are managing me pretty well, someday I forget I even have a brain condition.
I'm Rachel.
Nice to meet you Smile
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medmisfit
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PostSubject: Re: Rachel diagnosed 2011   Tue Jan 29, 2013 2:50 pm

Hi Rachel, and welcome to the group! I'm glad they were able to diagnose and treat your IIH effectively. I'm sure the last couple years haven't been easy, but it looks like you're in a good place now..it's always nice to hear!

Please take a look at the site and feel free to post any questions, concerns, experiences, or advice you may have..I look forward to getting to know you!

Good luck with your appointment!!!
Take care,
Julie
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Heidi
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PostSubject: Re: Rachel diagnosed 2011   Tue Jan 29, 2013 10:01 pm

Hi Rachel and a very warm welcome to our group forums. I'm so glad that everything seems to be under control and the treatments working well for you. It is always nice to hear from someone who is doing well and managing to have a decent quality of life, when things work for them. I look forward to reading more of your posts and to see how your life progresses with IIH.
Heidi hug
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Wylee
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PostSubject: Re: Rachel diagnosed 2011   Wed Jan 30, 2013 6:41 am

Hello Rachel, and .

Your story is truely inspirational. You had quite a journey going on there, but it sounds like maybe this time you will be able to complete your studies and go on to bigger and better things. You go girl!!

Keeping that you will find another doc as good as this one who is leaving. You know what they say.......when one door closes another one opens! Good luck and I hope you will keep us updated.
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BananasMom
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PostSubject: Re: Rachel diagnosed 2011   Mon Feb 11, 2013 4:05 pm

Hi Rachel! Smile Welcome to the group! Thank you so much for sharing your story. You've been through so much, it's great to know that you have made it to a place where you are managing well and feeling good. Gives others with IIH lots of HOPE to read a story like yours! *hugs* Glad you found us!
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