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 the other issues. I realize that there are few who specialize in neuro-opthamology, but it would definitely be worth finding out if there is someone in your area.
Diana
Sweetrse7@... wrote:
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 on a daily basis with Ear pain, and Head pain. I am not sure if it is normal. I went to the neurologist, and she told me that my shunt was working too hard, and that it needed to be fixed. Since then I have went to a ns, and he said that after viewing my last MRI everything looked the same and sent me on my way. I have constant pressure in my eyes, middle of my forehead, and the back and sides of my head just above my ears. My ear constantly hurts, like an earache without infection I guess because I have seen an ent and even he saw nothing wrong with my ear ! So I assume it is something shunt related. I get blurred vision at times, and some times lose my balance with walking. The things that irritate me the most though are the ear and head pain ! I
wish they would just find out what is wrong and fix it. I did travel to Wy and the ns there informed me that I shouldn't have a programmable shunt in my head. Well, since my very first one disenigrated in the last ns's hands back in 03, I am thinking that maybe he thought he knew what he was doing.
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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