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 Kimmi - diagnosed 1990

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KimmiD
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PostSubject: Kimmi - diagnosed 1990   Thu Feb 03, 2011 10:13 pm

Hello all.. My name is Kim. I am 44 years old, the mother of 2 along with 3 stepchildren and grandmother to 3 beautiful babies. My journey through IIH HE!! began 21 years ago. It all started in 1990 with visual black outs. I could be walking from room to room in my house, at college, or driving down the road at night, and any lighting changes would cause my vision to completely black out. I went to my optometrist, and at that point he didn't notice anything to terribly wrong with my eyes. He thought maybe it was the curve of the lenses on my glasses causing light to be reflected into my eyes and constricting my pupil. So, he put a non reflective coating on my lenses, and for the most part, it helped. Or at least that is what I tried to convince myself of. About 3 or 4 months later, I was having the same problem again. Back to the optometrist I go. This time he tells me that there is swelling on my optic nerves. He had noted a small amount of swelling at my previous visit, but didn't mention it. This time, he mentioned it and was extremely concerned. He made an appointment for me with an ophthalmologist.

I went to see this new doctor not knowing what to expect. My pupils were dilated, bright lights were shone into my eyes and a visual field test was done. At the end of the exam, the doctor asked if my mom was with me. I said, Doc, I'm nearly 26 years old I don't need my mom. She actually was with me at the time, and he said, well if someone is here have them come back to my office with you.

Now I was scared.. I couldn't imagine what could be wrong with me, but of course, I imagined the worst. And he confirmed my fears by saying that I either had a brain tumor or something called pseudo tumor cerebri. More appointments were made. This time with a neurologist as well as having an MRI done. At the neurologist office, she tried to do a blind stick spinal tap. After the 8th attempt, my husband (he was just my boyfriend at the time) said she's had enough.. You need to stop now. So, she sent me to the hospital to have a spinal tap under fluoro done. The opening pressure was 35.

So at this point, April 1991, I was official diagnosed with IH. I was put on 1000mg of diamox daily. I thought I was going to die just from the side effects. I felt like I was hyperventilating constantly, and the tingling in my hands and feet was unbearable.

Over the next few years, I was on and off of diamox, I had multiple spinal taps, tried some experimental treatment, and tried to cope as best I could. I would have periods of remission, and then back the headaches and visual problems. By late 1994 early 1995 I had about 5% of my central vision remaining. My peripheral vision was shot. I didn't drive, I could barely work. My husband and I owed a pizza shop at the time, and we came very close to losing it because I was unable to help. By mid 1995 my neurologist sent me to The Ohio State University Medical Center where I met the best doctors ever. After one visit with my neurosurgeon he felt it was imperative that I have a shunt placed as soon as possible. He did a spinal tap to check the pressure and the best guess was and opening pressure of 60+. The doctor said it was probably closer to 80 or 90, but the manometer only went to 60. The fluid shot all the way across the room.

I had a lp shunt placed in September 1995. At three months post surgery I had a spinal tap to check the pressure.. It was 5. For the next 12 years I forgot I had IIH. No headaches, no meds, no visual disturbances. Then 2007 came and it all went down hill.

On a Tuesday in late April, I was out with friends and all of a sudden my vision went wonky. That's the best word I have for it. Everything looked as if I was looking through a funhouse mirror. Pool balls were shaped like eggs, the floor was tilted to one side. Off to the ER. They find nothing and suggest I get with my neurologist. My GP made the appointment, and set up and MRI. Went to see my neurosurgeon. He did xrays and sent me for a tap. The pressure was 33. Two days later I had my first shut revision. 12 years is pretty darn good in the shunt world. I would gladly take another 12 years like those, but it is not to be had. Since May 2007, I have had 3 shunt revisions, including the insertion of a medtronics strat valve, and I have had ONSF.

I still have constant daily headaches. My most recent tap done on January 4th had an opening pressure of 21. Not too high, but higher than my body can handle. My shunt is operating full steam ahead, and there are no further adjustments that can be made.

I long for the day that I can wake up and say wow, my head doesn't hurt. or just a day that my first thought is not about IH. I look forward to getting to know you all better. If you've made it this far, thanks for reading. I'm sorry it was so long, but it is hard to get 20+ years in a short paragraph.
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PostSubject: Re: Kimmi - diagnosed 1990   Thu Feb 03, 2011 10:32 pm

Hi Kimmi and to the group, no need to apologise for the length of your introduction, because as you say 21 years is a long time. I can relate to your story so much, because it's very similar to mine, and I too have had IIH for 22 years now. It's great when everything is under control and you feel human again, so I know to be going through it all again, and your life going on hold is very frustrating and depressing. I myself managed remission for about 4 years, but when it came back it came back hard.

Well done to 12 years with a shunt and no problems, if only that had continued for you. Did everything change with the shunt revision, when I had my first revision because it was an LP shunt, it all seem to go pear shaped from there, until it became stable.

What does your Neurologist think to you continueing to have headaches besides the shunt? Has he discussed anything else or putting you back on Diamox?
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PostSubject: Re: Kimmi - diagnosed 1990   Thu Feb 03, 2011 10:40 pm

I actually don't have a neurologist that I see. My neuro-ophth and my neurosurgeon are the ones who have been managing my care. I have been on diamox again for the last month after my visit to the ER. Up until this most recent ER visit, my pressure had been around 15 or 16. As they say.. normal. But, too high for me. There are no guarantees with shunts. Mine was placed to save my vision all those years ago. The fact that I ended up headache free was purely a fringe benefit. They keep telling me that they can't understand why I am still having headaches. In my opinion, when they lowered me to 5 with my first shunt and it most likely stayed pretty low for a while, my body got used to that. When they dropped me down to about 8 or 9, I feel great. They just can't get my shunt to keep me there.

If it were up to me, I'd have my lp shunt removed and have a cisternal/atrial shunt put in. My abdomen is full of scar tissue and they figure that is causing a re-absorption issue. But it is not up to me, and as of right now, I don't have insurance so I am limited on what I can do anyway.
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PostSubject: Re: Kimmi - diagnosed 1990   Thu Feb 03, 2011 10:51 pm

My first shunt was put in to save my vision too, but unfortunately I lost my peripheral vision and depth perception permanently. When I was revised to the Vp shunt, I went through much the same as you and when my sight started to go again, they did 2 sub temporal decompression, about a year apart. I still have a vp shunt too.

I have to admit apart from the time of the month and bad weatherm, I've been great and my sight stable. I was really scared when they first said they were doing a sub temp decompression, but ini the end they were the best thing for me, because now I am getting on with my life without the endless headache pain that knocked me off my feet.

I really hope that this gets sorted out for you, it's so unfair that you're living like this and you must feel like you've gone back to square one. hug
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