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03-20-2015, 09:27 AM | #21 | ||
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Junior Member
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Dean, you do learn to REALLY enjoy and cherish the good times while you can, because only you truly know how bad the BAD times can be. Good luck with the NS or doctors in general, some of them can be extremely difficult to work with, so if you find a good one, grab hold and don't let go. Let us know how you get on. Merl1n |
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03-25-2015, 07:27 AM | #22 | ||
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Junior Member
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I hope you don't mind me jumping in here. I joined the forum last week and posted a question in this section, but it seems like you would have thoughtful responses for me given your experiences. I don't want to hijack this thread, though, so if you'd rather check out the "Is is worth trying again?" thread, that's mine.
One question that came up for me when I was reading through this thread was whether either of your (Merlin & Dean) shunts are the anti-syphoning type? When I called the hydro association the woman I spoke with asked me if that had been the case with the one that the NS implanted and removed. I don't know if mine was, and I don't know if it would have made a difference. All I really know is that the NS dropped me like a hot potato and that my symptoms are getting worse and worse; my latest fall injury was a dislocated collar bone at the SC joint. Between the falls and my cognitive decline (my wife helps me with stuff like this, btw), I'm feeling increasingly vulnerable and scared. |
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03-25-2015, 07:44 PM | #23 | ||
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Junior Member
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I don't mind ya droppin in ere, if you've got questions then please ask away. I don't have all the answers, but if I can answer, then I will. Unfortunately you'd have to ask a NS if yours was antisyphon, mine is now but it took them 7 surgeries to decide to add one eventually. I have found the medical neuro community very difficult, as in, 'we are the dr's, we know better than you, so don't you dare question us'. Often it can be better to get your Dr to ask the questions of the neuro, in writing. It can all be very scary as the patient and if you are not getting acceptable answers, then that can exacerbate the fear. But often the neuros/medicos don't seem to understand this. But if you are having falls then you must follow it up. Can you get a referral to another neuro or a physician to investigate for you. At least that way you'll have someone doing the 'hunting for an answer' for you. Merl1n |
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04-01-2015, 10:41 PM | #24 | ||
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04-03-2015, 09:16 PM | #25 | ||
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I have an appointment with what is called the pain management clinic here, which sounds a bit like your behavioural Medicine institute. I have a bit of a concern with it tho as from all reports they point the finger at a psychological problem as a starting point. My very first appointment is with a head shrink dr. Its taken them 2yrs to make an appointment, so I'd better attend or they'll say I'm a non cooperative patient (again). I'm not expecting any miracles, in fact I'm expecting them to comeback at me with psych meds because, as one dr put it "you can't be in that much pain, you must be unstable" TSK So I go along to their appointments and go '...yes sir, no sir, three bags full sir...' and then manage the best way I can. Please tell Dean not to take their judgement too much to heart. In the beginning I took it very much to heart and it got me way, way down. I must admit almost to the end of that rope. That was when I decided I have to manage this for me. Not them. Their information is useful but to think they have ALL the answers only lessens your options. Try to think outside the medical box. I use massage, hydrotherapy, relaxation techniques, alternative medicines and in combination I get some relief. As they say "Don't be putting all your eggs into one basket", use the whole arsenal at your disposal to your own benefit, whether it's medically approved or not. If it works, who cares what the dr's think, if they can't help, then help yourself any way you can IMO. Merl1n |
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06-28-2015, 07:44 AM | #26 | ||
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Hey guys. Hope you are still around on here. I have hydro and just had a a VP shunt put in. My shunt is a Codman Hakim programmable shunt. I was wondering what type of shunts you guys have? Also what pressure are they set at?
2 weeks after having surgery I went back to neurosurgeon to have my first check up. My symptoms were exactly the same as before the surgery. He adjusted my valve down another notch and I began having horrible headaches. I saw him a couple days later and he raised it back up and I haven't had any headaches since. I'm still not 100% but I think I'm slowly getting better with each adjustment. I have read that I'm your pressure is too low that you will get low pressure headaches. So I'm just curious about what pressure you guys are set to? |
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