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 Ready to find relief

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DMajorly
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PostSubject: Ready to find relief    Fri Nov 02, 2012 12:41 am

My neuro surgeon sent me to an opto- neurologist even though I had seen both neurologist and optometrist before. She's said oh your eyes aren't bad enough to worry at this point and your pressure is high and but I've seen way higher.....she told the surgeon she's advising against the shunt. I'm like obviously my pressure is enough to make me miserable and spend thousands trying to get help. I'm. Getting a cerebrial angio done to rule out blockage but now what the hell do I do? This lady has seen me once! And she's basing her theory on my eyes . I do experience visual disturbances at times too. I had to leave work today again because of the pain ......feels like my heads going to crack open and my left ear has been whooshing loudly again for days . Its miserable and I'm afraid for the future. Sad day ;(
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Wylee
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PostSubject: Re: Ready to find relief    Fri Nov 02, 2012 1:56 am

Oh, Desiree, how I feel for you. This eye doc needs an attitude adjustment. Perhaps your neurologist will see in her report that you do have IIH damage and he can make the call.
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PostSubject: Re: Ready to find relief    Fri Nov 02, 2012 2:23 pm

You can also ask for a second opinion. Make sure you're documenting all your pain and symptoms, so doctor has more info. Since you haven't found relief w/ meds, your surgeon may still suggest a shunt. I know it's frustrating and disheartening, but sometimes you have to keep looking until someone listens!

Hang in there!!!
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Dexter's Mom
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PostSubject: Re: Ready to find relief    Fri Nov 02, 2012 11:59 pm

You know I am just sitting here doubting, again, if I even have IIH since my eyes are normal. I had a totally normal eye test again this week and the vison field test was normal. The only thing I can base my diagnosis on is my high spinal pressure (29mm) and the total relief the tap gave me. I KNOW MY BODY and I don't care what they say about my eyes. I have IIH, I just don't fit perfect in thier little box- but then agian I never have. So maybe we both are just unique. [You must be registered and logged in to see this image.]

Whatever the outcome I hope the best for you. I am so thankful to have sucess with Diamox.

Nancy
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PostSubject: Re: Ready to find relief    Sat Nov 03, 2012 12:38 am

My spinal pressure was high also. That's how I was diagnosed. They did another a few months after diamox and it was still high ;( I was on a lot. I think 3000 mg a day. That's why I went to the neurosurgeon;( now I am feeling like I don't fit with them either. I have my cerebral angio set for wed. All this is so expensive and all I know is my head is killing me I've been on a bad one for days now. I hope someone will figure out something to at least make it manageable.
Its hard without the eye exam to support the diagnosis my main neurologist says without a doubt its iih....that other lady was like oh maybe not. All she cared about was eyes. ;(
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medmisfit
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PostSubject: Re: Ready to find relief    Mon Nov 05, 2012 3:04 pm

IIH is difficult to diagnose and treat. All professionals seem to have their own ideas, but it affects everyone differently. You can have IIH without affecting your vision or optic nerves..those are just symptoms of the increased pressure. I would look for another neurosurgeon, if he sides with the ophthalmologist..soley based on your lack of visual evidence. If your vision isn't in jeopardy they may suggest other things first, but they should still be treating your IIH.

Good luck!
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