'Hanging in there' is about all I can do. I try to keep myself motivated. I find if I sit and think about the pain or allow it to take priority it is as if I'm encouraging the pain. Please tell Dean that he is not the only one battling with the "Black Dog" of depression. I go there regularly. Pain is a strange beast. If someone has a sore leg they limp and you can see their pain. But a damn headache is so very unique, individual and isolating. I find some people trying to empathize with statements like 'oh headaches, yea I get headaches occasionally' and I want to say 'Not headaches like these ya don't' or 'headaches occasionally, oh that'd be nice' but I bite my tongue and just agree, when what I'd like to do is grab the person, shake the daylights out of them and tell them "YOU HAVE NO BLOODY IDEA!!!" But you can't do that so you internalise it, which can be even more destructive. This is why I find I need to keep myself occupied. I can stir myself into such a mess if I just sit and think. Just awful. I can do this by myself, the judgement of others just gets me there quicker. We had a family gathering and my nieces husband was giving me a hard time because I had a headache "It can't be that bad". Two weeks later and he's off work because of a sore leg. For some reason he didn't appreciate me telling him "it can't be that bad", then I reminded him of his own statements weeks earlier. He did not like that, but he hasn't made any statements since, so maybe a dose of his own medicine had the desired effect.
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

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.

Hey Tecari,
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

Hey merlin and tecari. I don't mind u dropping in on us tecari, glad to hear from u, I agree with merlin u definatly need a new neurosurgeon! R u on any seizure meds? Dean was really bad when he was on them, falling and stuff. Merlin hope u r doing well. De'an has been referred to a behavioral medicine institute, which deals with chronic headaches and the depression that comes along with the shunt. He is very hopeful. I hope they can help him. We r both getting to the end of the rope. Appt is the 17th. Tecari good luck to u!

Hey Lisa, Dean, Tecari,
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

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?