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 Cons. Neuro sx

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DMajorly
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PostSubject: Cons. Neuro sx   Wed Sep 26, 2012 3:13 am

Finally been referred to a surgeon. Now I'm scared... scared he won't help and do surgery. Nothing else has helped.
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PostSubject: Re: Cons. Neuro sx   Wed Sep 26, 2012 5:09 pm

I'm glad to hear you finally have an appt! I'd review the print outs and guides section to look at how to talk to your neurosurgeon and get a list of questions together. It also may be helpful to keep a symptom log. If you have a list of meds/affects or opening pressures, that may also help support need. I assume someone thinks it's necessary because they gave you a referral..they should also provide documentation. Is there anything in particular that makes you think the surgeon won't support a shunt?
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PostSubject: Re: Cons. Neuro sx   Wed Sep 26, 2012 5:43 pm

Hi! I love those print outs.very helpful! I'm more worried because every Med I have been on doesn't seem to help. I know surgery is a big deal but if he for some reason can't help I guess I will feel like I hit a wall.;(
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PostSubject: Re: Cons. Neuro sx   Wed Sep 26, 2012 9:30 pm

I completely understand! I've been in that position and been told there's nothing they can do, but you just have to keep going until you find a surgeon that hears you. If you have the symptoms and meds aren't working, then a shunt is the next logical step. I'll keep my fingers crossed for you..good luck!!!
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PostSubject: Re: Cons. Neuro sx   Thu Sep 27, 2012 2:11 am

If there is any doubt whether or not a shunt would benefit you, a lumbar drain test or ICP bolt test can be done (requires a hospital stay) and that way your doctor will know for sure. So please, do not get too excited at this point. There is, as Julie suggested, also the choice of getting another surgeon if this one isn't interested in your case.

Do not give up hope. Go to your appointment prepared. That will show the doc that you are committed to getting better. Which you obviously are.
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PostSubject: Re: Cons. Neuro sx   Thu Sep 27, 2012 2:48 am

Thanks guys ;0 had my visual field today... I'm my left eye it looks bad I guess...he wants to do another to get a wider spectrum next week and he said he will let the surgeon know. The diamox 3000the mgs a day is killing my tummy and its just not making a real difference in my Lps or my pain. They also keep giving me migraine meds which makes me mad... after like 30I of them failing its like when will she stop. I have have have to work full time. I know some people have it way worse so I feel bad complaing .... I just know this can't be it for me. I also know shunts aren't always a cure which scares me but I'm willing to try.
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PostSubject: Re: Cons. Neuro sx   Thu Sep 27, 2012 3:18 pm

I'm glad they're checking your vision and monitoring your condition..that should help! There is risk w/ any surgery, but I think you'll find most people find some relief w/ shunt. IIH can be difficult to manage, so it can be disheartening..all you can do is try!!! I know it's scary, but you'll drive yourself crazy if you focus on all the possibilities. State of mind helps a lot in the treatment and healing process, so try to stay focused on the positives..having less pain, improving your vision, etc. We're always here if you need support or a good rant!

bhug
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