Confused

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Confused

Postby AutumnB » Tue Oct 13, 2009 10:55 am

My son age 12 was just diagnosed a few weeks ago so I'm very new to all of this. The thing that I go over in my head is surgery. I'm feeling conflicted. Of course surgery is the last thing I want for my child, but what are the risks of not having surgery? For now he has had no headaches. He has been affected with IH specifically double vision. He is being treated with Diamox which seems to be working. If the CSF is being cut off due to the Chiari wouldn't that mean that surgery was needed? If he does not have surgery things could get worse, correct? I just keep hearing surgery is a last option (which I agree) I just don't know when it becomes necessary before further risk.
I don't even know if that makes sense. I'm in a fog. Any advice would be helpful.
Thanks
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Re: Confused

Postby Sara » Tue Oct 13, 2009 1:10 pm

Have you seen a nsg? IH can be a serious complication of Chiari.When you have papilledema or a syrinx, surgery is usually considered earilier than in patients who do not have these symptoms. what state do you live in? Someone may know of a surgeon near you.
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Re: Confused

Postby AutumnB » Tue Oct 13, 2009 4:10 pm

I'm in Southern CA. I did already get a list of preferred Neurologist in my area. Unfortunately, I'm caught up in the HMO wars on who they will let us see. I plan to get a second opinion even if it's out of pocket, but if we find out he does need surgery then what? It is so scary. We are already paying way too much for insurance and our other son had 3 surgeries (unrelated to Chairi/IH) last year. FRUSTRATING to say the least.
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Re: Confused

Postby lttutrow » Tue Oct 13, 2009 5:36 pm

Just from our experience, I'd recommend hunting for a good Neurosurgeon over Neruologist with managing the Chiari itself. The tipping point in decision making for my son was the syrinx along with diminshed CSF flow.
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Re: Confused

Postby Sara » Tue Oct 13, 2009 9:13 pm

you need to see a neurosurgeon, not a neurologist. Lazzareth is in CA he has an excellent reputation.
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Re: Confused

Postby youngwife » Wed Oct 14, 2009 7:13 am

I would think that if his ONLY symptoms were from IH, then that could be monitored, as long as the medication is helping. But, I agree, that you need to find an expert's opinion so that you can make a well informed decision.

Please let us know how things go!
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