Sorry Merlin if I offended You...I'm sorry You had such a horrible experience. Dean went to a catholic gradeschool and doesn't think much of the church anymore either....How are You doing? I'm worried about both You and Dean. no word from insurance co. if they will cover surgery so it's a waiting game..in the meantime dean suffers. we are going to ask for a referral to a new neurologist, will c how that goes. His neuropathy in his legs has really flared up. Has a hard time walking. I hope something has changed for the better for you. Thinking of you. Lisa and Dean

No offence taken Lisa. Yea, religion and education should never be mixed imo.
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

Ya Dean feels same way damn headaches! we are trying to c new neurologist but nothing happening so far. Still waiting to c if the surgery is covered by insurance. They have 90 days to drag their feet In the meantime headaches are worse than ever since botox has worn off. Has fallen 2 x's this week. Dean is really getting depressed cause the headaches just never go away. Hopefully we hear something soon. Hang in there Merlin!!

'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!