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 Lisa - diagnosed December 2011

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PostSubject: Lisa - diagnosed December 2011   Sun Apr 14, 2013 4:16 pm

I am now almost 23 years old and I was diagnosed with IIH a little more than a year ago. I have worn glasses my entire life and have a very bad astigmatism. This actually caused some difficulties in tracking my visual progress with IIH.

In late July 2011, I was in a car wreck. It was not a very bad car wreck by injury standards. A car turned left in front of me, I hit her car into a car waiting at the stop sign on the street the car was trying to turn on. Both my car and the car that turned left in front of me were totaled, but thankfully no one was seriously injured. However, over the next couple of weeks I started to get some pretty substantial back pain.

About a month before the car accident, I started on a birth control pill.

Sometime in mid to late August, I started to see some odd colorful blurs in my vision. I just sort of ignored them, because it was only every so often that they were happening. As college started back up again, the colors seemed to increase. The time they obstructed my vision and their frequency increased. Finally at the end of the quarter, I brought it up to my mom that I really needed to see my eye doctor. I probably would have gone sooner had my eye doctor for the last 20 years of my life not been 3 hours away from my college. When I explained my problems to the woman on the phone at the eye doctor's office, she assured me that there was no time to see my eye doctor until February. Fed up, I found an eye doctor near my college and when I called the office I had a completely different reaction from the woman on the phone. She wanted me to get in as soon as possible and scheduled me to come in that night, after the office had technically closed. She did not like what she heard when she heard me describe my symptoms and knew I needed to see a doctor. That night, I saw Dr. Singla who came in and had me explain my colorful blurs to him. As I explained to him what I was going through, it seemed almost like he didn't believe me and I felt disheartened. He gave me several eye tests, then dilated my eyes. After taking pictures of the back of my eye balls, he showed me how swollen my optic nerves were. You could not even seen them in my picture. After a visual field test, he had confirmed what he had initially thought. He told me to stop taking my birth control and to head to the hospital tomorrow for an MRI and possibly a lumbar puncture.

After my MRI, I had my lumbar puncture. My opening pressure was very high, 44 cm H2O. While I was laying in the hospital, the eye doctor called me and explained very briefly to me that I had PTC and that I would now be given to a neuro-opthamologist within the practice. He prescribed Diamox and scheduled an appointment with the other doctor for a few days later.

The first thing we tried was no birth control and the Diamox to see how my vision improved. I had already lost almost all of my peripheral vision, but had not noticed as my glasses obstruct it anyways. That didn't help, even with two more lumbar punctures. Three weeks after my first MRI/LP, I had the optic nerve sheath fenestration surgery on my left optic nerve. Three weeks later, the doctor decided that it wasn't helping enough and sent my to a neurosurgeon for discussion of a shunt. After another MRI and LP, it was decided I would have to get the VP shunt. Initially set the date for January 15, 2012, but an infection pushed the date up two weeks adding another two LPs to my growing list.

On February 1, 2012, I had a VP shunt placed and spent 6 days in the hospital. The first 3 in ICU and the last in regular care. I am happy to say my vision is now almost completely back and has been stable since August of 2012.

I still struggle with some symptoms (especially the headaches), but I have made it to grad school. A year and 4 months, 6 LPs, too much Diamox, an optic nerve sheath fenestration, a VP shunt, and plenty of tears later, here I am. It's not always pretty, but it's not always ugly either. I wish I would have found a group like this when I started this. I have found one other person throughout my journey who I met in person who had this disease, she was my nurse from the day I was getting my VP shunt. Usually most people don't even know what it is.
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PostSubject: Re: Lisa - diagnosed December 2011   Mon Apr 15, 2013 11:01 pm

Hello Lisa and Welcome

I am so glad that you were able to find such a wonderful "gatekeeper." Having the person who answers the phone know a little about the possible problems their patients may have makes such a difference. Perhaps a little note to your "regular" eye doc is in order. That gatekeeper needs to learn when exceptions HAVE to be made. If you had waited just to get a first consult, your outcome may not have been so good. Flowers to the good gatekeeper, raspberries to the other one.

Being able to continue with your education is wonderful news, and will be so motivating to many others who's lives have been disrupted because of IIH. Please keep us updated. I hope that your news will always be good.
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Lisa - diagnosed December 2011

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