I have known from as far back as November 1996 that I have had this condition, at that time my tonsils <brain> was hurniated to 7mm. Nothing was done for Chiari at that time for me, instead, the doctors diagnosed me with Pseudotumor Cerebri. Pseudotumor Cerebri is a condition that causes too much spinal fluid <CSF> and the brain does not absorb the excess fluid. This diagnosis made since to us all at the time because after my first lumbar puncture, my opening pressure was above 580cc. Three years later I find out that I never had Pseudotumor but it was the Chiari that had made me so sick for so long.
That Monday morning, I could not move. When I walked, it felt like I was moving a brick building. I hurt so bad but I could not even cry. I did make it to the Neuro's office. He took one look in my eyes and told me that I have 'Pseudotumor Cerebri'. OMG!! I knew what this condition was because my cousin also has it. It is such a dibilitaing illness! The Doc sent me down to get a lumbar puncture. My opening pressure was 580cc and normal pressure is supposed to be at 80 or below. This opening pressure confirmed his diagnosis of Pseudotumor. My body felt SO much better after the LP! Like a million bucks, even though I was made to lay flat for a hour before they would let me go. As soon as I got home, my head began to fill up again and hurt. <At this time a MRI scan was done; ordered by Dr. John Oro. Dr. Oro is a great doctor and I highly recommend him, however, at that time, he was not on my insurance, he was only covering for my regular doctor. This MRI showed "Arnold Chiari Malformation". Dr. John Oro now has the Chiari Clinic in Columbia Missouri.>
I was on many medications, just a few are: Prenisone, Diamox, Lasix, anything that was said to absorb fliuds and also Darvocet, Percocet, Codine- anything to conquer the pain. This medicating lasted for only a couple months before the doctors realized that nothing was keeping my fluid levels down. I also went through mnay LP's during this "medicating time" to lower the pressure <fluid level>. but to no avail.
In January 1997 I had my first shunt surgery. A lumbar Peritaniel Shunt was placed in the lumbar area of my spine. Set to drain off axcess amounts of spinal fluid. I recovered from the surgery and went home. I started to develope sharp, ice-pick headaches that were greatly relieved only by laying flat. After a day or so of being home, my dad had to drive me to the ER because the headaches where so bad I could hardly breath. I was sweating ice cubes, shaking and in a terrable amount of pain. The ER doc gave me narcotic medicine and sent me home. After that day it was never THAT bad again but I suffered from the icepick headaaches for the rest of that year. My doctor <the one who diagnosed me> finally said " I don't know what else to do, maybe you should consider seeing tops docs at the Mayo Clinic". After that the only thing that doc did for me was medicate me.
In Novemeber of 1997, my family and I left for Jacksonville, Florida to move in with my sister and start to see the doctors at Mayo Clinic.
Then to top it off, if I wasn't drugged enough, they told me that there was nothing else they could do for me but they would give me Morphine so I wouldn't have any pain. UGGGG So I packed my bags and went home to Missouri! I figured that if I was going to die- I would do it at home with my family. My experiences made me think that I was doomed, I mean, if the Mayo Clinic can't fix me-no one can right???
It has been so long since I have written.
This was a very scary day, other than the surgery itself being scary as heck, the doctor scared the he** out of my whole family. <I would never recommend this doc on his bedside manner> My two dearest friends in the world took my children for the day and my mom and John took me to my awaiting knife. <<Right now I do not have the Medical papers in front of me so this is in my language- as soon as I can I will also add the medical language>>
Ok well- don't remember much during the surgery- wonder why that is??!! :)
The whole thing lasted 14 hours. He had the nurses shave my whole head- 16 inches of hair all over- gone, all gone! Then he open the back of my head and removed my skull from about the top of my ears, from ear to ear, down. He put in 4-6 small titanium plates <somewhere in there> and then casted a cosmetic skull and screwed that in place so I didn't look disfigured. Basically what he did was made the opening in the base of my skull wider so that my big brain has room. Okay, so then he drilled a burr hole in the left side of my head to drain the hydrocephalus and consider a VP Shunt < I am so glad he thought against that one!> But now I have a hole in the side of my head!!..... then he went into my back - remember those LP Shunts? Well, He thought he would have a wack at 'em. So he opened me up and tied each one of them off. I think he said that there are 5 in there. They are all a REALLY big mess and one is penetrating the Dura. <oh joy!!!!> Ok then he ZIPS me up and throws me in ICU for 3 days literally with NO PAIN MEDICATION! The nurses as well as my family all wanted him dead! He said his REASONING behind this was that he needed me to be alert enough to be able to tell him if something was wrong........ uggggggg.......yes i do still have many resentments with that one.... One year and 5 months later and I am accually not doing any better, I accually feel worse than before I came back home. Wishing I would have hit the Mayo Clinic up for Morphine about now....WAIT- There is still more- click here for the next page