Laura: You might want to go to your neurologist & tell him what is going on. While a lot of people have nothing but negative things to say about neurologists,...
Diana & Laura, I have been to my neurosurgeon (last appointment was last August) and he confirmed that it is difficult for me to tell when i am getting ...
Hi- My name is Jill, and I have had over a dozen surgeries and revisions. I have Dandy Walker Syndrome. I am the mother of two, and am married. I suffer ...
Jill: Hi! Have you asked your doctor about seeing a neuro-opthamologist (sp)? Someone with that specialty might be able to address your eye pain & some of...
Diana- Thank you for the information. I did in fact go to SF and see one at UCSF, and that was when I was told that I no longer had peripheral vision in my ...
I really do feel for you, while I don't have hydro myself (on here because my daughter does) I have neuro muscular issues and have had 2 disc fusions with one...
Jill: One of the members of the hydro support group I belong to has had lots of problems, over the last several yrs, w/her programmable. She had pressure...
Diana- Thank you for believing me ! A lot of people don't. All I ask is that the pain go away ! My life on a daily basis is hard. It is a chore to even ...
I have a 17 mo son who is shunted and just had a craniectomy in Feb and has been doing great. His NS is concerned about his head size. It is growing at a...
Hello, My name is Harriet, and I am trying to find people with Hydrocephalus who were born with it, and might be able to keep in touch with me. As a lot of you...
Thanks Jenny for the suggestion. I've actually already tried Topomax but stopped it after a year - it made me too tired to the point that i felt "doopey"...
Hi Harriet! I was born with hydrocephalus and would love to keep in touch with you. I'd love to talk with you ... do you by any chance have AOL Instant...
Dear Harriet, You can vent anytime. We are listening. I had no support group when I was born. So I wwill...
Hi Harriet. My name is Chris - I'm 44, and have had hydrocephalus for all my life. I can certainly understand everything not being able to fit in, and can...
there has to be soemthing to kill these headaches. im gunna go insane before im 30 for crying out loud! ... Topomax ... that i ... would ... August) ... ...
... help! ... the ... be ... do ... touch ... I to was born with hydro and am now 41 1/2 be 42 in Oct. I had a shunt replacement done last yr and believe it or...
Hi Harriet and Chris,         My name is Peter and I was also born with hydro. I also have porencephaly. I do not have a shunt. I am 64 years old. I...
Does anybody else with hydro get tired easily when walking or just doing ordinary things through the day? Â Sally ... From: PETER MCNALLY <pjdkmc17@...>...
I never really noticed. Though I think I attribute my tireness to my medicine. I have only had my shunt and hydro since last May 2007 so I am not sure if that...
hi sally, yes i do sometimes just doing the dishes wears me out. Laura and Ripple ... From: Sally Rochman To: hydrocephalus@yahoogroups.com Sent: Monday, July...
Please come visit me in my myspace.com/monicad1974 I have my hydro story and info I can pick up along the way plus a video of a doctor explaining hydro and...
After being on this list for a few years, I cannot understand why surgeons keep putting those programmable things in peoples' heads. Apparently the ...
psincer9:  One of the major reasons is that, in theory, there isn't nearly as much surgery w/programmables. If there is a need to change the settings, it...
hi Laura, Â My name is Mike im from Utah. I have hydro and unfortunately i also have rsd. I didnt even know what rsd was until my diagnosis 1 yr ago. i have...
i new here! ive recently been diagnosed with hydrocepalus after being really ill from an operation in april. im stilla t the stage where i find the whole...
