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DMajorly
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PostSubject: what to do   Thu Oct 18, 2012 2:00 am

Sooo confused and ready to just give up. I met with the neuro surgeon who said I needed a shunt or a stent ( might be a blockage in there), he wanted me to get ym eyes checked before he did surgery to see how bad my eyes were.... my normal eye doc was worried about my vision becasue my visual field test was not good. This other doc that the surgeon sent me too said that my eyes didnt look bad and that she advises against doing a shunt unless my vision were to get worse. She said that my pressure wasnt as high as some of her patients were... and that it will not help with the pain. I was already worried about it not helping the pain and now im really concerned. I have a heaache everyday all day long. Its ruining my life and i feel like people are tired of hearing about it. Im tired of saying that my head hurts! I feel like I have tried everything. I CANT take it anymore, im sure everyone here understands.... I felt like this was going to be my answer and its not turning out that way. I dont have children yet but I would love to have them... I odnt know how people can do it with this condition though. I go to work and come home and that feels like more than I am up for most days.

feeling very helpless.
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PostSubject: Re: what to do   Thu Oct 18, 2012 4:26 pm

Have you spoken to your Neuro surgeon since that examination? I would think the ultimate decision would lay with him, but I would have a frank talk with him about how you feel about constant headache and not being able to function adequately. Don't take it as a given that what she has said will go, until you have had a chance to discuss it with your surgeon, as your opinion and point of view are very important whatever the decision. You could also ask him that if he agrees with her and is against the shunt, what does he recommend for the constant headaches etc, because you don't want to live the way you are indefinitely. Stress how you feel and ask all the questions you need. Hug

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PostSubject: Re: what to do   Thu Oct 18, 2012 6:56 pm

I was going through the same thing almost I was having my Nerologist saying that I needed the shunt because iDiamox was making me feel horrible although it was helping somewhat, my vision in my right eye is slowly getting worse, but they are not to worried about it because I don't have visual disturbances all the time, except for in the am. My vision in the am is blurry for about 2 minutes then they go back to normal. So my Nero-Opthamologist was the one saying that I didn't need the shunt even though my Nerologist said I did and he should be the one to know since he had been following me for a year prior to me seeing my Nero-opthamologist (NO). The N.O. Raised my diamox to two times the amount I was taking, which I had already been on that dosage once before and had lost about 55 lbs andi didn't help. Then I just went back to my N.O. A week ago after being on the higher dose once again and nothing had changed and my headaches have gotten worse, coming more often and lasting longer, it is effecting my vision but they seem to be not so worried about it as I am because I have seen my previous visual field tests from my Opthamologist in my home town and my right eye is getting worse just at a slower pace. So at my last appointment I made sure he listened to me this time cause last time he didn't let me talk at ll, I told him I felt like crap, I can't clean, I can't cook dinner and thankfully my baby girl is old enough to help and do things for her self like going to the potty and dressing herself etc. he then said that the next step for me would be a shunt, it's the only way we will be able to tell if I can come off diamox and not feel as crappy. It was a struggle but I had to keep putting my foot down and telling my NO that this is what my Nerologist wants for me and that he has followed me since the begining. With this illness I have come to learn that because of the rareness of IIH that doctors really don't want to listen to what you have to say about it or what you have learned or heard about it. Stay strong and put your foot down, you need to do what's best for you, and whatever that may be shunt no shunt let them know what you want.

~Nichole
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PostSubject: Re: what to do   Thu Oct 18, 2012 11:26 pm

Hey sweetie! I'm sorry to hear you're still dealing with constant pain. *big hugs* What are you up to on your Diamox dosage now?

Will your insurance allow for you to get a second opinion from another neuro? Shunt (or stent) is a big step and if you don't feel you're getting clear guidance from this doctor, maybe it would help to talk with another. It's just a thought, honey ... something to consider if you don't feel you're getting the care you need where you are now.
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PostSubject: Re: what to do   Fri Oct 19, 2012 12:33 am

I would also suggest that you speak to your regular eye doc again and see if she/he will speak to the NO on your behalf.
Yes, shunts are used first and foremost to save vision. But, your vision is not getting better, it is getting worse. OK, so maybe slowly, but it is still going in the wrong direction. That coupled with the headaches, which a shunt (but not a stent) will help get rid of, leads me to think that maybe you should try to convince your neurologist/surgeon to do a ICP bolt or lumbar drain test, and see, one way or the other, whether you are a good candidtate or not for a shunt.

I so hope yours docs get together, and soon, for your benefit and not their ego.

Good luck and bhug
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