My name is Gabriela. I live in California. I was wondering if there is a group dedicated to Hydro, specifically in San Diego. It would be nice to talk with others that have this condition, and share experiences.
The same with gaining new information regarding Hydrocephalus. Thanks for taking the time to read this post.
Gabriela .
Gabbie--
I can not answer your questions about a support group in the San Diego area. However, if you will just click on the link on this page to the Hydrocephalus Association, you will find a listing of support groups all over the country there. I hope this helps!
Martha
I'm Tom from the Hydrocephalus Association. We are currently in conversation with somebody who wants to create a support group in the Los Angeles area.
Please check out our list of support groups at: http://www.hydroassoc.org/education_support/partners-network
If anybody is interested in starting such a group, please contact Sarah at sarah@hydroassoc.org.
Tom
Hi Gabbie,
My name is Phil Myers. I was diagnosed with Hydrocephalus back in 1993 while at a school for the blind in San Francisco/Oakland area.
I lived in the High Desert from 1984 - 1995. Attended the school for the blind from Sept 1992 - Apr 1993. I was diagnosed with the Hydro in Mar 1993 and had the shunt placed in August 1993
From 1995 - 2008, I lived in Louisiana. and now I am located in San Antonio.
Hi Gabbie,
I live in San Diego and have a son with Hydrocephalus. Not sure if you want a peer to talk to but if you have insight for me I'd love it.
Hi meems66,
I just find it difficult to talk about hydrocephalus. Its just that nobody seems to know what one goes through w hydro. Sometimes, I try to talk w my fiancee, he understands, but only the last 6 years. For the last 10 yrs, I had a "fixed" shunt, and in August 2009 it stopped working. That's when they fitted me with a programmable shunt. What type of shunt does your son have? I know that the closest group for Hydro is in the L.A. area. I do know by doing internet research, that Children's Hospital has a Hydrocephalus site. It would be nice to have more people or even a small group to get together, and just chat. So that we can all take in different information.
Hi Gabbie,
I can not even imagine how difficult it must be. My son has a VP shunt. He will turn 3 next month and has had it since he was 6 months old. Today for the 1st time he truly knew he had something different behind his ear and asked me "what is on my brain, mama?" I didn't want to fake it and tell him nothing. I did my best not to break down in tears. I told him he had a special machine that help his "brain". He said, "nah, it's not a macheen it's a carrot" we laughed and I hugged him as tight as I could. I know we will have many more questions ahead of us. God willing I will always be able to comfort him and answer him honesty and with compassion.
He just underwent surgery to repair a hernia and a hydrocele (which I insisted were related to his shunt tubing). After surgery the surgeon notified us that the shunt tubing had indeed gone down into his pelvis and lower regions. Which contributed to his hernia and hydrocele.
I hope we can find a way to start a group in San Diego. The only group from Childrens that I know of is Liam's Fund. Is there another group? Do you see a difference in the programmable shunt?
Hi Gabbie I too have been trying to find others in the San Diego area who would like to start a support group. It's important to share our stories and help one another through difficult times. If possible I'd like to take part in organizing a group for the San Diego area.
Hi meems66,
I just read your post. Sorry that it took so long. I am borrowing my niece's computer, so i still need to get used to it. Just by reading your post, you son sound adorable. We should try to get together, and chat. I saw that you asked if there is a difference with a programmable shunt; I see no difference in theway it works. The only difference I have noticed has been when its really cold, like it has been the past few days; my shunt tends to tighten up a bit. I have come to realize that everytime, a cold front comes along my shunt will sense it. I have learned to cover up from head to toe. Especially the area were my shunt is located.
Hi Noey 1991,
I am glad that you would like to start up a group here in the San Diego area. That would be awesome. We need to try to get together, and share stories and information on how Hyrdocephalus has affected us. When would you like to start the group ? Let me know.
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