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11-12-2014, 06:59 PM | #11 | ||
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lisa and dean |
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11-27-2014, 09:13 AM | #12 | ||
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That's great news, hope it continues. I've been to see the NS this week, had ct scans prior, they told me that it seems more fluid is being retained than I need and the ventricles are again expanding. They altered the shunt settings and although the mornings HA have shown some improvement the evenings HA have gotten worse, off the scale worse (which I was hoping wasn't possible). I have been told and have read that it can take a week to 10 days for any such adjustment to settle and take effect, 10 days of this and I'll be ready to kill (joke)(well sort of). When they first inserted the shunt I had bad HA for about 5-6 months, this time round its been about 2 years and still no light at the end of the tunnel. But then I remember a lady who was in hospital at the same time as me. She had had major complications and infections and was in a much worse state then myself. So as bad as it may seem, it could be worse. Dean I'm glad you've had some success with the botox. Long may it last. P.S. If you ever feel the need for a HA, just ask I could donate you one at anytime, free of charge. Merl1n |
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12-11-2014, 07:20 PM | #13 | ||
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Hey Lisa and Dean,
So, I've been and had 2nd botox, had scans and seen NS again. Seems this is as good as it gets, which is disappointing/depressing to say the least. Hope all is going OK on your end Merl1n |
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02-12-2015, 12:32 AM | #14 | ||
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Hope You r doing a little better..The botox really helped Dean but Dean's insurance has change & new will not cover the botox..so we r going to talk to a plastic surgeon about this (I think) its a nerve decompression surgery...not sure if he is a candidate or not or if insurance will cover but its worth a shot, his ha's r back real bad. Hope You can get some relief from that botox |
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02-12-2015, 05:04 AM | #15 | ||
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Ahhhh that's disappointing for you both. Me?....well in technical terms I'm screwed. My HA has not improved, if anything has gotten worse. Dr's have not given me any answers, they want to point the finger at me like I enjoy the HA, "it's psychosomatic.." like I'm imagining it, a figment of my imagination, I wish it was, then I could just figment it away. My income protection insurance runs out this month, it only lasts 2years. So now I'm really up to my eyeballs in it. I'm trying for disability but when the dr's have 'fixed' the problem then the problem is me. So disability won't pay. ahhh What fun? NOT. So yea, as I say, I'm screwed Merl1n |
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02-12-2015, 09:46 PM | #16 | ||
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02-13-2015, 10:43 PM | #17 | ||
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Merl1n |
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03-15-2015, 09:21 PM | #18 | ||
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03-17-2015, 08:46 PM | #19 | ||
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Anyway, things aren't good. My friend pain seems to have setup house. Been back to see neurologist, he's the botox man. He told me if I didn't have an 80% improvement from botox, it wouldn't be funded anymore. Now he's changed his diagnosis from migraine to cervical dystonia, so the funding can continue. So now that's just another diagnosis to add to the list. None of these 'specialists' really have any idea. Each dr I go to see tells me something different, but nobody is pointing at the shunt as a cause. But I just have to go with the flow, do as I'm told, follow their advice cos otherwise I'm not following medical advice and that puts a big red 'X' next to my name. I just want to get back to work, but that ain't happening. Tsk. Damn headaches Merl1n |
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03-19-2015, 09:35 PM | #20 | ||
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