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 In remission!!

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PostSubject: In remission!!   Thu Jul 05, 2012 1:35 am

I was diagnosed with IIH in 12/1998. After numerous LP and VP shunt surgeries, and the horrific complications to go with them, in 2008, we discovered that I am in remission.
I had my first LP shunt placed on 10/11/99. It failed within 4 weeks and I had developed a radiculopathy - shooting pains down my left leg - it was awful. During this time, I was also dealing with Chronic Migraine. More surgeries followed in January, April and May of 2000. After the May 2000 surgery, I did not wake up, I had a subarachnoid, subdural and an intraventricular bleed. I was left with left hemiparesis and spent the summer regaining what function I had lost. Still had the Migraines...
Had my first successful VP placed on 8/16/2000. That one lasted until the following July, when it began resetting itself. I spent many hours in the ER. My Neurosurgeon didn't want to replace it right away, he wanted me to wait until September when a "new" shunt was coming out. The problem was...after 2 1/2 years of disability, I was going to be starting a new job in September. It all felt so hopeless! And still dealing with the Migraines!
I got the shunt replaced on 9/7/2001 and was supposed to fly down to Florida to go to Disney with my best friend on 9/14/01. But, 9/11 happened and here in NJ, the airport kept closing an opening. Finally got out on 9/21/01. Then on 9/23/01, I bumped my head on the car as I was getting in and knocked off a scab - or so I thought. When we got back to our hotel, my friend said that I should check my bald spot to make sure that it wasn't sunburned. I wasn't able to see, so I had her check - she freaked! She said not only is your bald spot sunburned, but you have a hole in your skull and I can see your shunt!!
Ended up in surgery a few days later and then on 14 days of Clindamycin. After I finished the Clinda (while I was in orientation for that new job), I counted the days...four days later, on the following Sunday, I woke up with the most excruciating headache and neck pain that I could ever imagine! Yes, I had Meningitis (#1). I was in the hospital for 19 days, out for about a month and then went back to the hospital where I was going to be working to fill out paperwork to re-start orientation. While I was there I developed a really severe Migraine - or so I thought -I don't remember most of the 5 mile drive home - it was Meningitis #2. I was in 12 days this time, but this time I had a Gram negative organism, the first was Gram positive. It did make a difference. I came out of that one not totally "with it". I was not confused, just a bit disoriented. I also had problems walking - I was tripping over my feet. They wanted me to use my walker, but I stuck with a cane. That turned out to be a Folate deficiency. I was also diagnosed with ADD from Brain injury a few months later.
I didn't get a new shunt after that case because I was not draining very much into the external bag they had connected my shunt tubing to, so they didn't think that I needed one anymore. The following February (2002), I got my new shunt - this time on the left side because the second Meningitis was from my shunt popping through the burr hole and eroding my scalp. After that surgery, I was "pressure-free" so to speak. I "only" had the Chronic Migraines, but no more pressure.
In December 2004, I developed tinnitus - I had had it before when my IH was "active", so I had a feeling that my shunt was failing. I developed pressure headaches in January or February. My headache Doc was in total denial of course! But I complained enough for him to do a tap and yes, my pressure was high again. Off to the Neurosurgeon. Ended up with a revision, not a replacement, and then went on my merry way for another few years.
In March 2007, after a headache admission, I finally got there - Migraine/Headache free!! Woohoo! Then in the summer of 2008, I went to see my Neurosurgeon because I had a strange little sharp "thing" poking above my shunt. It felt like an out of place screw. I had been monitoring it for about a year, and now it had a scab. When I got to my Neurosurgeon about three weeks later, it had healed. He said to just watch it. A few weeks later, I got a four day Migraine and then began to "lose words" and started falling a lot. Then I was falling and couldn't get up by myself, was incontinent and had expressive aphasia. But, no, I didn't think that I needed a hospital!! (Nurses are such great patients! NOT!). My Mom decided that when I got dressed and fell again, she was going to call an ambulance. They took me to the local ER - actually - at the hospital I was supposed to work at all those years ago. After a CT scan and an MRI, I went off to ICU - still wasn't concerned! My PCP came by to tell me that I had a brain abscess! He recommended that I go down to Philly where my Neurosurgeon was and have the surgery there. A. because they knew me and B. because the hospital that I was at didn't have the proper instruments to do the surgery.
I got down there at 4AM and at 5:45AM I was in the OR to have my shunt removed. A week later, they had to go in and take out the entire abscess (the original plan was to leave the wall of it) because it wasn't shrinking with the humongous doses of antibiotics I was receiving. 3 days after that I was discharged to a sub-acute for the next five weeks.
The end result? Remission!
I thought (and probably had) that I had a well functioning shunt and was also Migraine free in the meantime. So, I have no idea when I went into remission, but I've been there since at least 2008!

So, the moral of this long story? It can happen! I almost died five times over those years and now I work full time. I went through a lot of hopelessness between IH and Migraine, but now I am essentially headache free. i get a headache every month or two, but usually head it off - I've even successfully taken Tylenol! And I couldn't do that when I had just Episodic Migraines!
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PostSubject: Re: In remission!!   Thu Jul 05, 2012 4:50 pm

celebrate Thumbs up woohoo congrats

I'm so pleased for you Dawn and thank you for sharing your story! It means so much for those that are still stuffering to know the is always hope! xxx
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PostSubject: Re: In remission!!   Thu Jul 05, 2012 5:43 pm

Dawn I am soooo pleased that you've joined us and shared your success story with us. hug You are truly a remarkable woman and inspiration to all of us. I admire your determination and absolute resolve to not let this disease beat you, or stand in your way of doing what you wanted to do. Your success is like a beacon of hope to many, as it shows no matter how bad it gets, there is always a light at the end of the tunnel.

Heidi for you
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PostSubject: Re: In remission!!   Fri Jul 06, 2012 3:36 pm

It's amazing how much a person can endure..thanks for sharing your success, and CONGRATULATIONS!!!
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PostSubject: Re: In remission!!   Sat Jul 07, 2012 11:57 am

Thank you for sharing your amazing story of hope with us, Dawn! Very Happy Those of us with IIH who are still suffering need to hear stories like that to let us know that there is light at the end of the tunnel in many cases. You've been through an incredible amount of suffering over the years and your strength is inspiring!
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In remission!!

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