well its been a week and for last 2 days no headache!! hopefully we found the cure for him. I only hope you have as good a luck!! keep us informed
lisa and dean

Hey Lisa and Dean,
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

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

Hey Merlin
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

Hey Lisa,
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

Well Merlin that sucks and am truly sorry to hear that..maybe once we talk to plastic surgeon maybe you would b a candidate for this procedure too. but you have to have a positive outcome to botox. I hope everything works out for you!! Hang in there You will be in our thoughts and prayers. maybe try new neurologist, im thinking bout that for Dean. Its in gods hands.

I've gone down the path of trying different neurologists before and unfortunately they all talk to each other. I saw an ophthalmologist who reckons it maybe scar tissue that is the problem, but my GP does not agree. It seems scar tissue is made up of collagen. The brain tissue does not contain collagen. Scar tissue within the brain tho does cause seizures and I'm not having seizures. So I have one specialist telling me one thing and another telling me the opposite. Nobody seems to have any answers other than the problem being me. As for the problem being in god's hands, I went to a Catholic boarding school and after that experience I can confirm there is no such thing as a god, cos if there was there would be no such thing as a catholic boarding schools. Sorry but that's my experience.
Merl1n

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!!