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 Thinking about surgery, how do I talk to my drs about it?

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peanutbutter
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PostSubject: Thinking about surgery, how do I talk to my drs about it?   Wed Jun 06, 2012 7:33 am

So I'm 18 and have had IH for almost 4 years now. My quality of life sucks to be honest I feel totally sick all the time and having trouble with realisations that other people don't actually feel like this?.. anyway I've been on all of the medications and they either didn't help or caused bad side effects. I had ICP monitoring which showed spikes of 30 but thats a long story of crappy hospital etc etc...
anyway I'm just wondering (and I realise you can't really answer this) but at what point do they consider surgery? I mean my vision isn't at immediate risk, but it is blurry and getting worse and I have TVO's and it makes things difficult, and I have mild pap when not on meds which is worse when I feel worse.. Like do you think they'd ever give me surgery when I dont have severe pap?
I already lost 3 years of my life and terrified I'll never make it to uni because of this and hate that I don't get to try something to help when I've tried everything else...and I have nothing left to try... I know its surgery and major and the complications but I already have brain effects from IH and this isn't a life anyway, anythings got to be better right? I also know people in person who have been pretty much fixed with shunts and have had no problems, so I don't know why I couldn't be one of them (as everyone hopes of course)...
Arg sorry just not dealing with this at the moment and probably have to stop my medication and I know I am going to get so much worse and I don't know how I'm going to handle that with school and everything 🇳🇴
Hope you're all okay.. xx
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sinister416




PostSubject: Re: Thinking about surgery, how do I talk to my drs about it?   Wed Jun 06, 2012 3:17 pm

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They usually decide to do surgery when your eye sight is at risk and the medication hasn't reduced the swelling on the optic nerve. They usually will have you do the ICP Bolt to determine if a Shunt will help and decide from there, if they haven't discussed surgery with you yet there must be a reason.

Have you discussed surgery with your Neurologist?

I'm so sorry life is difficult for you right now [You must be registered and logged in to see this image.] Try and stay positive and fingers crossed they find a treatment that works for you xxx
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Heidi
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PostSubject: Re: Thinking about surgery, how do I talk to my drs about it?   Wed Jun 06, 2012 9:15 pm

Nikki is right about the surgery, it's usually when eyesight is at risk or when all the medication has been exhausted and has been found to be ineffective or because of the patients reaction to it's side effects.

I do understand how difficult it all is for you, and that you just want to get on and live your life as well as you can. I would see if you could get an appointment with your Neurologist and have a good chat with him about all of your concerns etc. Tell him about how you feel, and about your treatment plan, because he is the one overseeing your care. He will be able to fully answer all your questions that you have in regard to whether surgery is an option for you or not. He may want to try other things first before taking you down that route.

Let us know how you get on. hug
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Wylee
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PostSubject: Re: Thinking about surgery, how do I talk to my drs about it?   Thu Jun 07, 2012 4:27 am

Fortunately, there are some doctors out there that think "outside of the box" and are willing to work with the patient toward getting a resolution early when it is inevitable what the outcome will be anyway. i was lucky enough to have a whole team of them.,
Are you getting daily headaches? Perhaps that will be a determining factor. Also, it seems that you would have a better chance of getting a shunt installed if you live in the U.S.
Good luck to you.
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