Hey everyone, this is my story, this is a brief outlook of the last eight years of my life with Intracranial Hypertension a/k/a Psuedotumor Cerebri a/k/a Benign Intracranial Hypertension (I have too much fluid/preasure on my brain). I am 30 years old, married to a WONDERFUL man and have two beautiful boys (4yrs and 1yr). I was diagnosed with IH eight years ago. I was working at a doctor’s office when my vision started getting really blurry and I started having blackouts. I had been dealing with bad headaches for a couple of years, I honestly blew it off to stress, working too much (I had two jobs) and to much partying. I made an appointment to see an eye doctor about my vision. I went to my appointment that day by myself thinking it was just my need to start wearing glasses again. The eye doctor did his exam and seemed really disturbed by what he found. He told me that my optic nerve was severally swollen and that I needed to see an Ophthalmologist immediately. When ask what could cause this he told me it was probably MS or a brain tumor. Terrified, I went home that day TERRIFIED! I had just started dating my boyfriend, the man I am married to now. I went into work the next day asking tons of questions to the doctor’s I worked for. I saw the Ophthalmologist that day and he sent me for a spinal tap and MRI the next day. My opening pressure was 39 and I was diagnosed with IH. I was put on diamox and given pain medicine for my head. I was at work two days later with an awful headache, I told one of the doctors and he gave me a shot of toradol, a couple of hours later I went to the restroom because I was not feeling well, I felt very dizzy and had an awful head pounding headache. I was found soon after that passed out in the bathroom. I was sent to the hospital and admitted. They did all the normal test which came back fine. They did a blood patch and I immediately started feeling better and was sent home. After a couple of months with no improvements I was sent to a Neurosurgeon to discuss my options. I was scheduled to have an LP shunt put in (the shunt will help regulate the fluid on my brain, it is placed in my lumbar region, in the spinal column). I had the surgery and was sent home the next day. I went home and my boyfriend (now husband) took care of me. Things got so bad that he ended up taking me to my parent’s house. I was unable to eat, drink or do anything. I would vomit every time I ate, sat up, drank, or stood up. I was readmitted to the hospital and over the course of a couple of days I started feeling better. After two weeks I was ready to return to work only to find out I had been laid off. Yep, I was laid off from a doctor’s office, not to mention I had only missed a total of three days besides the surgery over the last two years. I have a high pain tolerance and didn’t miss time from work. I got married to my husband that August and started a new job. Things were starting to look up, life with an LP shunt seemed to be well, and I was able to resume my normal life as if nothing had ever happened to me. A year later I started the whole process over again. I was taken into surgery to replace the shunt and he told me that scar tissue had clogged the shunt. A week later I was readmitted to the hospital because spinal fluid was leaking out of my incision and I started having low pressure headaches. They took me in for surgery again and fix that and all was well. Things were okay for the next six months or so, I still had bad headaches from time to time, but nothing I couldn’t deal with. I started noticing changes in my vision and made an appointment with my neurosurgeon. He looked in my eyes and said that my optic nerve was swollen, but not that bad. He said the shunt wasn’t working properly but there was no huge rush for surgery since my optic nerves didn’t look to bad. Over the next month or so I was having really bad headaches. Knowing that I have a high tolerance to pain I called my Neurosurgeon and he argued with me but finally agreed to go ahead and fix my shunt. When I got out of this surgery, he apologized to me and was very surprised that I had been able to function because my opening pressure when he went into fix the shunt was 59. He said that was the highest he had ever seen a person besides trauma patients. So over the next couple of years everything seemed to be going very well. In April of 2004 I found out I was pregnant after about a year of trying. We were ecstatic. I ended up miscarrying in June. We quickly became pregnant again, except being extremely nervous; the pregnancy was going well until I was about six months along. I started having very bad headaches and my blood pressure was way high, which was very unusual for me. I was admitted to the hospital many times during my pregnancy due to the fact that my symptoms mimicked that of preclamsia. It was hard for the doctor to tell if it was my IH or Preclamsia. I ended up having a baby boy on March 2, 2005. He was five weeks early, but he was healthy. He had to stay in the hospital a couple of extra days for some rapid breathing and jaundice. I learned half way through my pregnancy that I would not be able to get an epidural due to having an LP shunt, so went through labor with absolutely no drugs and no pain meds. Life was GREAT, my headache was gone, I had a beautiful baby boy and my husband at my side, things couldn’t have been any better. I woke up the next morning, sat on the side of the bed to get up and realized I had a low pressure headache. I got out of bed and looked in the mirror to find that I had broken many blood vessels in my eyes, they were completely red and full of blood, and I had broken blood vessels all over my face around my eyes, I was a sight to see let me tell you. My Neurosurgeon was called by the nurse and he told me that I could be discharged as planned. I needed to lay flat on my back for two days to help the low pressure headache. I did that and it didn’t help. I managed to live the next three months in horrible pain due to low pressure headaches. I went to see my Neurosurgeon and he blew me off, he said he didn’t know what to do. I went to get a second opinion and was scheduled for surgery the next week to place a programmable LP shunt in. I then received a call stating that my surgery had been cancelled and that my old Neurosurgeon would be doing the procedure. I didn’t think much of it at the time, I was just happy that someone was fixing the problem, by this time I had been in agony for almost four months. Back to work, caring for a newborn with low pressure headaches. Anyone who has had a spinal leak from a lumbar puncture can sympathize with me. I had the surgery and was sent home the next day. The adjustment from that surgery was the worst I have EVER experienced. I guess my head was so used to having no fluid that it was a big adjustment to my body. I recovered from that surgery and started having gall bladder attacks; I landed myself back in the hospital a couple of weeks later having to have my gall bladder removed. Okay, I recovered from that and ended up having to have a new shunt four months later. My opening pressure that time was 48. Things went well after that until I again became pregnant. This pregnancy would be far harder than the last. I was in and out of the hospital numerous times for days at a time over the seven months. They did a spinal tap which came back with a normal opening pressure and drew about 20cc's of fluid off, which doesn’t explain why I am having headaches. Not knowing then that I had Chiari, the spinal tap only made things worse, especially drawing fluid off. They induced me and I had another beautiful baby boy on December 21, 2007. He was seven weeks early and ended up in the NICU for two weeks. He was overall healthy, just breathing difficulties. After another natural delivery, my headaches resided after having the baby. My Neurosurgeon and OB advised me against having anymore children due to all the difficulties during the pregnancy, I agreed and got my tubes tied a month after delivery. My headaches started coming back again and I saw my Neurosurgeon and he recommended that I have a VP shunt (a shunt put in my brain) he did a spinal tap to measure the pressure and the opening pressure was 12, he pulled 18cc of fluid off and I was in the hospital for six hours laying flat and then released. Due to the conflicts between my Neurosurgeon and I, I decided to try a completely different Neurosurgeon in a different city to get a second opinion. He admitted me to the hospital and put an ICP monitor in my head. They drilled a hole in my skull and put a thin wire in that measures the pressure in my brain. I woke from the surgery with no headache. I was in the hospital for three days with no headache. I was headache free for about three to four weeks. When I was released the Neurosurgeon told me to follow up with a Neurologist if my headaches returned. I started researching my symptoms because my headache was at the base of my head, unlike my high pressure headaches and I would get excruciating pains when I coughed or climbed stairs or did physical activity. I came across acquired Chiari Malformation. I made an appointment with a Neurologist here in Richmond. I went to see him and told him that I believed I had acquired Chiari Malformation from my overdraining shunt in 2005 and excessive spinal taps. He smiled at me and refrained from laughing and told me he didn’t believe that I had Chiari Malformation. He diagnosed me with Neoccipital Nerualgia and wrote me a script for anti inflammatory and physical therapy. After two weeks of physical therapy and my symptoms worsening, I made an appointment and demanded an MRI. I was scheduled an MRI, only to find that no one would adjust my shunt. I had to make an appointment with my original Neurosurgeon after begging and pleading and I was finally scheduled to have an MRI. I will never forget the phone call I received from my Neurologist last week when he called me to apologize. I was diagnosed with Chiari Malformation. Those of you who don't know what Chiari Malformation is, it basically means that my brain stem has been sucked down into my spinal column. I have just been diagnosed with this disease; I am yet to know where this path is going to lead. To start my Neurosurgeon has turned my shunt up to the highest setting, in hopes the the fluid will build up in my spinal column causing my brain stem to push back up into my brain some. The damage has been done already, but we are trying to correct it so it is not so bad, to eleviate some of the major symtoms I am experiencing. I will keep updating my blog to keep those of you who are interested updated. Thank everyone for your thoughts and prayers!