My name is Jennifer and I am 24 with hydrocephalus and I would just like to meet people that I could talk to over the internet. I want to be able to relate to...
Hi and Welcome Jennifer, Though am sorry that we are both here. I am a 40 y o, big kid who ended up having a shunt put in Last May after having radiation for 2...
Hi Jennifer welcome to this group. Jennifer <wildcatfan@...> wrote: My name is Jennifer and I am 24 with hydrocephalus and I would just like to meet...
My name is Ilana, I have Congenital Hydrocephalus, am Deaf-Blind and am semi paralyzed. -- original message -- Subject: Re: [hydrocephalus] Jennifer From:...
Ilana2@...
May 8, 2008 3:03 pm
1869
Hey IIana, How are you? I just have hydrocephalus. Hydrocephalus is hard to deal with for me, because I don't like to go out and do anything because I am...
Hello Jennifer; I was told i have hydro in Jan.08 and had a codeman shunt installed April 3rd. the first week or two I was very impressed with the operation. ...
Elana, I sympathize with your migraines. I had one that lasted for almost 4 years when God healed them one night almost 3 years ago. Without knowing your...
Thanks Joel for your email. Yes, they are very annoying (and painful at times) yet I have continued to go about my life. I've always had headaches somewhat...
Wow, this email came at a really eerie time. See, I too, have been suffering lately with migraines more often than not. They are frustrating to no...
Elana: First, I would make sure that these are migranes. Quite often members of the support group I belong to have had hydro related headaches misdiagnosed as...
hi Diana, That is what my ns told me that i was having migraines. But when i had an icp motoring study my icp went up to 60 at times and while laying flat it...
Never give up How many blessings first appear as troubles? How many opportunities come in the form of problems? If you give up when trouble first arrives,...
Hi there, I mostly lurk on this list because my daughter has congenital hydro due to some other medical diagnoses. I think I accidentally deleted a couple of...
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...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
