This is a group where we are trying to raise awareness of this chronic disease. This disease effects nearly 20% of the population...and is a very serious illness that should not be taken lightly.
Welcome to the Hydrocephalus Awareness Group! Please write who you are and why you joined....and anything else you may want to add! and best of all....have fun!
48 year old male diagnosed with idiopathic hydrocephalus JAN. 2008 shunt installed April 2008. My life has been put on hold over this I am still off work and it is just about August. My family is having a very hard time dealing with this as well. I have major headaches and I hope with each adjustment of the shunt it will fix them. But after 4 adjustments I still have problems. Just looking for support and to chat.
Hi. My name here is samanthasmom. My 21 month old baby has had two failed third ventriculostomies and now has a vp shunt. So far the Lord and the shunt seem to be working together. Her last surgery was 7/25/2008. I am here for anyone who needs support, has tips, wants to chat, or just needs someone to talk to about this and I hope if I need someone in the future or have a question someone will be there for me.
Hi all;
Duncan Here from Southern Alberta Canada.I was told I had idiopathic cognitive Normal Pressure Hydrocephalus in Jan.,08 operated on in April of this year. I joined because I am looking to find and chat with others whom are going through the same problems I am. Mostly headaches but also pain in belly and neck. Some days are unbearable I am still off work which is hard for me. The first month was OK but after 6 months I am getting very bored and I would love to be good enough to return to work.
Hi there, I'm Kether and looking for some advice to pass along to my brother whom has had hydrocephalus since he was a baby (he's 26 now)and a shunt placed in his head then as well. Also he suffers from horrible depression... He hasn't been to a neurologist doctor in about 11 years and I'm worried his depression has to do with his shunt. He gets headaches, is cranky, insomnia, anxiety and has a hard time with his concentration but refuses to go to a doctor, party because he doesnt have insurance. All of these symptoms he's been self medicating with marijuana but now now his insomnia and anxiety (during the day when he can't smoke) is worse than ever. I've offered to pay for a doctor and he wont accept my $. Yesterday he told me that he's considering going to a psychiatrist which is great... I'm just concerned that his Shunt in coming into play with his depression. Does anyone know how often you're supposed to see a neurologist?
i don't have neurologist currently. i hadone, but, then we realized it wasn't the best for me. and quite frankly,i read somewherethat people born with hydro, 80% of them wind up with clinical depression. which i suffer from as well, but i use music to take my mind of the things that trigger it. and i had a psychiatrist who, all he cared about wasgiving me meds. and he didn't want to try other things. but, my psychotherapist was the one who desided herbal remedies which i like better. because if they don'twork, at least i don't have to waste all my time and money for nothing.
My name is Susie. I have been diagnosed with mild hydrocephalus due to a pea sized benign tumor in my brain blocking the tiny duct between the third and 4th ventricle. I had ETV surgery on January 5th. I'm pretty much back to my old self and able to do most of my regular activities, except I continue to have daily headaches which occur at the same time every day. Since I live on a small island in Hawaii I had to fly to the main island of Oahu for my surgery and for meetings with my neurosurgeon. There is only one neurologist on my tiny island here and I have an appointment with him this Tuesday to figure out what to do about my headaches. Right now my primary doctor has me taking low doses of valium to control the pain. I'm anxious to hear what the neurologist will want to do. The neurosurgeon said from my last MRI my surgery looks fine and he doesn't think the headaches are post op headaches. It's all such a mistery to me and all so new too, because I've always been very healthy. And Krisitie, I'm older too, 59 years old with 3 stepchildren and 9 grandchildren. I joined because I have never known anyone with hydrocephalus before, however, I do have a friend who had a very large brain tumor removed. Anyway, I joined for support and to find out as much as I can from others in my situation.
I'm Stephen. I found out I had hydrocephalus after a Sinus CT scan picked up enlarged ventricles. Currently it is untreated as I am asymptomatic and have been classified by my local NS as having "arrested hydro." However, I am in the process of getting a second, or maybe even third opinion. My brain's been my greatest asset for my whole life, so I freaked out when I was diagnosed and am working with a psych team to get control of my anxiety issues. Finding a positive community of folks living and succeeding with hydro is a wonderful find.
I am Julie. I had hydro all my life but first having severe problems in fall 2008--shunted Dec 16, 2008. I wanted another support group to hear others stories and compare notes. I am glad there are such support groups for hydro as it is a debilitating condition. I am willing to answer any questions anyone has to try to help as much as possible.
Hi! My name is Heather. I was a premature baby weighing only 1lb.10oz. I was not diagnoised with hydrocephalus until I was 23 years of age, although the doctors have said that I have had it all of my life. I also suffer from depression which I think makes everything worse. The reason I joined is b/c I feel that no one understands what I am going through except people in similar circumstances. I have gotten alot of support from people on this site, and I thank everyone dearly for their advice. I would like to get to know some people, so if I may ask, can I please ask for some friends?? Thank you all for listening.--Hopeful82575
Hello my name is Aja. My son is 5 years old and he was born with hydrocephalus. His first shunt was at 7 weeks. He had at revision at 6 month due to a blood clot blocking shunt. After his second surgery he had a seizure bcuz of a kink in the cord. Now at 5 years old I found out it has come disconnected and looking at surgery next month. Im in this group bcuz im a first time mom and never heard of this medical condition before and I would love to get information and support to help get thru this.
Duncan Here from Southern Alberta Canada.I was told I had idiopathic cognitive Normal Pressure Hydrocephalus in Jan.,08 operated on in April of this year. I joined because I am looking to find and chat with others whom are going through the same problems I am. Mostly headaches but also pain in belly and neck. Some days are unbearable I am still off work which is hard for me. The first month was OK but after 6 months I am getting very bored and I would love to be good enough to return to work.
I hope this helped.
God bless
Kimberly
My name is Susie. I have been diagnosed with mild hydrocephalus due to a pea sized benign tumor in my brain blocking the tiny duct between the third and 4th ventricle. I had ETV surgery on January 5th. I'm pretty much back to my old self and able to do most of my regular activities, except I continue to have daily headaches which occur at the same time every day. Since I live on a small island in Hawaii I had to fly to the main island of Oahu for my surgery and for meetings with my neurosurgeon. There is only one neurologist on my tiny island here and I have an appointment with him this Tuesday to figure out what to do about my headaches. Right now my primary doctor has me taking low doses of valium to control the pain. I'm anxious to hear what the neurologist will want to do. The neurosurgeon said from my last MRI my surgery looks fine and he doesn't think the headaches are post op headaches. It's all such a mistery to me and all so new too, because I've always been very healthy. And Krisitie, I'm older too, 59 years old with 3 stepchildren and 9 grandchildren. I joined because I have never known anyone with hydrocephalus before, however, I do have a friend who had a very large brain tumor removed. Anyway, I joined for support and to find out as much as I can from others in my situation.
Aloha,
Susie
I'm Stephen. I found out I had hydrocephalus after a Sinus CT scan picked up enlarged ventricles. Currently it is untreated as I am asymptomatic and have been classified by my local NS as having "arrested hydro." However, I am in the process of getting a second, or maybe even third opinion. My brain's been my greatest asset for my whole life, so I freaked out when I was diagnosed and am working with a psych team to get control of my anxiety issues. Finding a positive community of folks living and succeeding with hydro is a wonderful find.