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 Need some advice..

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medmisfit
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PostSubject: Need some advice..   Mon Jun 27, 2011 7:47 pm

Ok, I've really been struggling this spring, so I'm trying "kitchen sink therapy"..throwing everything at the pain and just hoping something sticks!I've had daily headaches for over three years now and it's getting to the point that I'm missing more and more work. I've seen a few neurosurgeons and they all agree that moving my LP shunt is too risky, eventhough it's probably causing my pain..crazy and frustrating I know, but I really can't fight them all right now. I'm honestly hoping that if I do everything they suggest, they'll eventually give up and move it..I've been dealing w/ this for over 12 years so I know my resolve is stronger than theirs, but I'd love to find a little relief.

I don't tolerate medication very well, so I've been trying other alternatives. I've been getting Massage Therapy and Reiki for years now, but they just seem to help w/ relaxation, energy, and muscle tension. I've had a couple of acupuncture treatments and they're ok for relaxation too, but don't seem to be helping w/ the pain. I know they said it could take several treatments, so I'm just wondering if anyone's had any luck w/ acupuncture. My neurologist is also recommending Botox Injections, so I wondered if any of you have tried them. This is my desperation hail Mary, so I guess I'm really just looking for suggestions..anyone??

Help Julie
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Heidi
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PostSubject: Re: Need some advice..   Mon Jun 27, 2011 8:24 pm

Oh Julie I wish I could shake your Doctors. I don't understand why they think they can't revise your shunt when there are many of us who have had them revised from an LP to a VP shunt. I haven't had accupuncture or anything else so I'm afraid I'm a bit useless to you there. I would suggest though getting in touch with the IH Research Foundation and ask them for any advice about this and what they think, as well as possibly being able to communicate with your Doctor. It's worth a try I think because they may be able to suggest something. IH Research Foundation
Heidi
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PostSubject: Re: Need some advice..   Tue Jun 28, 2011 8:12 pm

I knew someone would understand my frustration..thanks for your support Heidi! I did email IHRF and they responded very quickly. They basically said they couldn't advise me re: medical issue because every case is different, and alternatives don't seem to work. They suggested going to the conference in August because there will be experts available. I've talked to my brother about taking me, but it would be an expensive waste of time if I'm down w/ headaches that weekend. I live in Columbus, so I'll probably try it..hopefully the rain will stay away!

I just saw everyone on my team and basically it seems they want me to try the Botox because they're convinced I'm having migraines exacerbated by the shunt stuff..I'm really tired of fighting today, so your support is much appreciated!!! hug

Still open for suggestions if anyone else has any ideas..
thanks,
Julie
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