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 KimmiD Success

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PostSubject: KimmiD Success   Sun Mar 20, 2011 2:29 am

KimmiD IIH Success

Back when I was first diagnosed with IIH (1991) I never would have called myself a lucky one. But looking back, I'd have to say that luck and most likely God were on my side. From diagnosis to shunt was a little over 4 years. At the time of my shunt, I had only about 5% of my central vision remaining. I was nearly blind. I expected to be blind within a few months. Then I got my shunt. It was amazing. Withing a few short months after my shunt placement, my vision had totally returned. It shouldn't have been possible. 3 years of constant pressure and swelling on the optic nerves should caused permanent vision loss. But it didn't. I actually quit wearing my glasses (optometrist said I didn't have to humor him by wearing them) for several years.
The shunt worked wonderfully. I actually never knew it was there. Had no problems with it nor did I have any IIH symptoms for the next 12 years. Yep, I said 12 years. M y shunt was awesome.

I have had some rough roads since 2007, but I just wanted you all to know that sometimes great and unexpected things can happen.

I pray and hope and wish that everyone can have the same kind of luck that I did.
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PostSubject: KimmiD Success   Fri Apr 22, 2011 6:45 pm

12 years is awesome!! I'm sorry to hear that you're struggling now, but this disease does seem to ebb and flow..hang in there, and thanks for the well wishes..some days it seems like a hope and prayer is all there is!
I get so caught up in the negatives (the appts, the pain, the expenses, etc) it's nice to be reminded there is hope. And, I guess I have come a long way from where I started, so I should share too.

I was actually unable to work for almost 4yrs (from diagnosis to shunt implant/recovery). We refer to them as "the dark years"..I had huge holes in my vision, and all the pain/weakness associated w/ IIH. I had to move back in w/ my parents at 30, and sold almost everything..I was so depressed! But, I started gaining strength after the shunt placement, and eventually started working w/ the Bureau of Vocational Rehabilitation..they were awesome! They helped me w/ resume, interviews, clothes, and supported me through the entire process. I started w/ a part time job to build confidence and strength. It wasn't all rainbows and butterflies, but eventually I got licensed again and entered full time employment. I've been working consistently for 6yrs now. It's been a long trail of baby steps, but it IS possible to function w/ IIH.
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PostSubject: Re: KimmiD Success   Thu Nov 10, 2011 7:20 pm

Wow, I loved reading both of your stories! So much hope. Thank you for sharing!! Very Happy
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PostSubject: Re: KimmiD Success   Fri Dec 30, 2011 7:54 pm


Hi KimmiD

I like you was diagnosed roughly ten years ago. To date I have had too many LPs to count and the time in between LPs has decreased over the years. I have had little pappiledema but have had horrible and sometimes unbearable pain. I take such a high dose of Diamox (1000mg in AM, 750mg in afternoon, 750mg at night) that I am fatigued all of the time as my CO2 level is so high.

I used to go to the ER when the pain was unbearable. They would give me IV Demerol and Phenegran and it would knock me and my headache down. I cannot use the ER as a resource for pain relief anymore as they always now insist on doing an NRI or CT before administering the meds. The last vist to the ER the doctor told me that he would need to do an LP even to rule out other disease. I told him that if I was going to have an LP it wouldn't be by him but rather by my neurologist. As a result of no longer being able to utilize the ER my neurologist agreed to prescribe oral Demerol but that didn't provide even the slightest similar affect as the IV drug. Most recently he prescribed a Fentanyl transdermal patch. I was scared to death to use it as I have heard of people dying from it's use. He assured me that I was not going to have a poor outcome. I used one of the three day patches recently but still didn't get much relief.

My neurologist has been softly urging me to have the shunt procedure as I am now 50 and can't keep having serial LPs forever; especially if they don't last long. I like the neurosurgeon that he referred me to. The neurosurgeon plans to use a VP shunt when and if I finally make up my mind. I've been kind of leaning towards having it during the first quarter of 2012 but it scares the hell out of me. I've had numerous surgeries including orthopedic and abdominal but the idea of someone passing a catheter through my brain is almost paralyzing.

Your story of living with the shunt now for twelve years doesn't seem to be the norm from what I've been reading. I hear of many revisions which alarms me even more as that means going through this more than once. It would be greatly appreciated if you would describe your procedure. Did you have a VP or LP shunt? What the experience was like? Where were the incisions, etc.

These past few months have been the darkest of my life. I have been greatly depressed and my eyes are watering just thinking about it. I don't want to keep living my life in pain all of the time. I never want to go out and do things (as I never feel good). It has strained my relationship with my wife whom I adore. At the same time I am having difficulty committing to the surgery. I need for someone to tell me that it will be OK and that there won't be any complications. I don't think that person exist.

Best regards and happy new year

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