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 problems & other issues, some resolved and some not. She has had infections & other complications, some of which have been dismissed by docs, saying that it is psychological--which no one who knows her believes! I don't doubt that there is a problem that isn't being recognized.
Best of luck!
Diana
Sweetrse7@... wrote:
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 left eye because one of my optical nerves died ! Lucky me huh ! Well, since then I have had continuous battles with head, eye and ear pain on a daily basis. I wish they could just figure out what the problem is and fix it already. I was told by a neurologist that the pressure in my shunt might be off due to the fact that I have a programmable one. I used to have a VP and that one finally gave out about 5 years ago forcing me to have this one put in. I praise UCSF though. That is a very nice hospital.
Sorry guys but i decided for once I need to vent .... I've had such a hard 3 weeks with really bad headaches - where I've had periods at work where I've had a...
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...
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...
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...
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 ...
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"...
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) ... ...
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 ...
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 ...
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...
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