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 Ashley's Story

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jokergirl82

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PostSubject: Ashley's Story   Fri Apr 11, 2014 7:46 pm

Hello. My name is Ashley and I am a 31 yr old and I currently live on the east coast. I was diagnosed with IIH in Oct 2012. I knew nothing about it. The Dr. that diagnosed me had never seen anyone with it and I didn't fit the description for the "standard" type of person who would end up with this gift that keeps on giving. LOL I Dr. hopped until I landed in Hopkins with this AMAZING neuro eye doc who knew just how to treat me. By this point my periphial vision was all but gone and the sight in my right eye was close to being permanently damaged. So in April of last year I underwent the optic nerve surgery in the right eye and my vision on that side started to become stable. And then the left side went downhill FAST. A week later I was sitting in front of the top CSF disorder DR. that there is. He was and still is viewed as a pioneer in research for IIH. He had me hospitalized that day due to my symptoms being out of control. The diamox was a joke to me. I was on 2000 mg a day and I am on 5 ft tall and weighed around 110 lbs. I ended up having the VP shunt placed and that was awesome for a time. Until about a month ago when my symptoms returned worse than ever. I had an LP done and the opening pressure was 57! The right ventricle of my brain collapsed onto the catheter of the shunt causing it to not work. I recently underwent 2 more surgeries, 1 to remove the shunt and 1 to place a stent into the sinus vein in my brain. I can happily say that I have next to no pressure anymore and my ears don't hardly ring at all. The Dr. who I kindly refer to as my Super Doc said that the ringing will go away over time bc it's going to take time for my brain to learn to work right again. I would highly recommend this procedure. At least to those who can get good docs like I have at Hopkins.
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Wylee
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PostSubject: Re: Ashley's Story   Wed Apr 16, 2014 5:11 am

Wow Ashley, what a wonderful outcome.  Who are the docs that you see at Hopkins?  I attended the IHRF conference a few years ago in Ohio and one of the docs, Michael Wall, was there.  He is/was affiliated with Johns-Hopkins.  Amazing, dedicated Neurologist, dedicated to helping those with IIH.
I had thought about going up there, but have been dragging my feet  :roll: 

It is so rare to hear of docs trying the different procedures, but it sure sounds like they did everything right.  You have a great team!  congrats
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medmisfit
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PostSubject: Re: Ashley's Story   Wed Apr 16, 2014 8:41 pm

Hi Ashley, and welcome to the group! You've definitely been through it, but I agree, that's an amazing outcome! I hope this procedure works for you on a more long term basis!!!

Thanks for sharing..
Julie
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BananasMom
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PostSubject: Re: Ashley's Story   Tue Apr 22, 2014 12:21 pm

Thanks so much for sharing your story of hope!
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jokergirl82

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PostSubject: Re: Ashley's Story   Tue Apr 22, 2014 2:55 pm

My docs at Hopkins are Dr. Abhay Moghekar (he does the CSF disorders and is the super doc), Dr. Vivek Patel who is my neuro ophthalmologist and completely awesome and last Dr. Phillipe Galloud who is the doc that did my stent procedure. As of today I am feeling better and better everyday. Thanks for the support guys!!   thank you
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Wylee
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PostSubject: Re: Ashley's Story   Wed Apr 23, 2014 4:34 am

congrats  congrats  celebrate
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swilborn
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PostSubject: Re: Ashley's Story   Sun Sep 24, 2017 9:28 pm

How are you feeling Ashley? Still seeing improvements? 

I'm heading to Johns Hopkins in a few weeks to get another opinion and discuss the stent procedure as we've heard that has good results. I had the same issue where my VP shunt stopped working because my ventricles kept collapsing. 

With the stent, did your headaches improve? Did your headaches improve with the shunts?
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