Information on cures and shunts

I am a 43 year old woman and I have been dealing with ptc for about 18 years now
I have had about 16 spinal taps laying on my side and on my stomach with a floufiscope. It doesn't matter it still hurts and it makes me very ill after it is over. I get no relief not even temporary relief from the headache. My pressure has been above 400 so much so that it has shot through the end of the tube that meassures the fluid. I am blind in the left eye and almost so in the right eye. I have been on steroids,diamox,lasix you name it I have had it. I have had 2 optic nerve fenestrattions on each eye. 2 lumbar shunts and in the last 2 years I have had 22 brain surgery's to have a VP shunt put in taken out because I have to much pressure that the ventricles are to small to allow the shunt to work it clogs it up not only in the brain but it also blows the tubing that drains in the stomach. Complications from all of that have been staph infection in my spinal fluid and spepsis infection that almost killed me. The Neurosurgeon's who have done this to me have been sued now by other people not me for operating on wrong body parts substandard care etc. Now the Dr's in my town won't touch me because of this.
The severe pain in my head never goes away I spend many nights in bathroom because the nausea from the headache is awful. I have been skinny,heavy,and back again it didn't make any diffrence I heard about vit. A years ago I even donated spinal fluid to the Univ. of St.Louis for the research never heard anything more about it. But I consume nothing with it in it. I try to walk as much as my body will let me to keep my weight down. I wish the doctors would tell me the difference between ptc and high pressure Hydrosphellus (spelled wrong) I have been told I have that to.
I read a email on here from a girl who does not want surgery I understand that but when you start hurting bad enough you will do what ever it takes to make it stop. I fought for 4 years to get social security because they do not see it as a handicap it has handicaped me. I cannot drive anymore and no longer work my profession as a travel agent/teacher the pain is awful. You may email me any time I have been through this for alot of years and lot of surgeries. Tweet