Arnold Chiari Malformation

This is one of my many illnesses that I have.  Illnesses, disorders, diseases whatever you may call them.  I have several.  Arnold Chiari Malformation is a rare condition of the brain.  As described by the Web MD website:

     "Arnold-Chiari malformation is a rare malformation of the brain that is sometimes, but not always, apparent at birth. It is characterized by abnormalities in the area where the brain and spinal cord meet that cause part of the cerebellum to protrude through the bottom of the skull (foramen magnum) into the spinal canal. This interferes with the flow of cerebral spinal fluid to and from the brain, leading to accumulation of cerebral spinal fluid in the empty spaces of the spine and brain. The portion of the cerebellum that protrudes into the spinal canal can become elongated and is called the "cerebellar tonsils" because it resembles the tonsils."



(fig 1.)
This is my actual MRI from 10-24-2005, showing the massive herniation all the was to C-2. along with a brain stem hump that I still have. (looking as if I were sliced in half top to bottom through the nose to the chin)
(fig. 2)
This is another of my MRI's 10-24-2005 pre-surgery. (this is looking as if cut in half ear to ear looking down through my neck)

My brain was so herniated that it was crushing everything in its way, as you can tell by fig. 2.  Look in the center of this picture and at the section that looks like 3 circles together the top one, that is the that your brain stem meets the spinal cord in your foramen magnum.  The spinal cord is supposed to be free floating in CSF (cerebral spinal fluid).  It is also supposed to have plenty of room (extra) for all of your accessory nerves, etc.  Foramen magnum is Latin and means, "great hole", oh heck, not in my case.   



My herniation was 25mm below the base of my skull on one side and about 19mm on the other side by the time I had brain surgery which was November 18, 2005.  I had been having sever migraines since I had a car accident back in 1987.  This was the trigger point of my growth.  In some cases this happens but it is more common it is a hereditary trait.  In my case I had no blood flow out of the 4th ventricle of my brain, which kept pounding inside my head and on my pituitary gland which in turn messed up my endocrine system which them made my thyroid gland not work correctly.  That made me gain weight over time.  I was nearly 200 pounds.  I felt like crap daily! (still do a lot)  I'm talking migraines, migraines and more migraines!  I had/have numbness, confusion, memory loss, spots in my eyes, body drops, sleeplessness, then over sleeping, pins and needles, burning sensation, superficial thrombophlebitis, a brain stem hump from c1-c2, scoliosis, occult tethered cord, fibromyalgia, chronic fatigue syndrome the list goes on.  I will go into detail later.  Here is a picture taken the day after I came home from surgery. The day before Thanksgiving.  I can remember my brother calling me zipper-head because of the 43 staples I had for the 11 inch opening they had for the the posterior fossa decompression. 




This MRI was post surgery and as you can see the great area there that I no longer have the herniation there, but the brain stem hump still exists.  This is permanent damage and irreversible.  You can't see it the greatest, but if you look really good you can just make out the titanium plate at the end of my skull line, well I have to hold my brains in some how, lol.  
                                                                                                                   


In this picture I was 178lbs, and a mess.  I barely remember anything.  I know it was a long surgery.  I remember about 12 hours before I was awake from the time I was put under anesthesia.  There was so many things they found while doing the surgery so it ran longer than usual.  My mom was told about 5-6 hours and yeah, that came and went before they came out and told her all went well.  I had many issues.  


I now have no c1 and c2 is just about gone, but no worries I'm not a complete bobble head, lmao!  Although I still get migraines and have a lot of residuals from the surgery there has been improvement for me.  At least I feel as though there were.  I'm alive!  If I didn't have the surgery I would have ended up in a wheelchair and totally paralyzed on my left side if not completely them eventually dead.  I was choking while I was eating and could barely swallow any kind of whole food as it was.  I was stopping breathing while I was sleeping because of the herniation being so downward.  It was crushing my throat.  It was bad.  So the was I look at it.  I still feel like crap just about everyday and I can never work again, but I am alive!  I can walk and talk.  I type and write this blog, yes.  I type things and save them and post them as I go.  Just because they maybe posted in the same thing it doesn't mean they were written they same day.  I have been doing this for a long time. I can't sit for that long, it absolutely kills me.  Thanks to my doctors, Dr. Milhorat and Dr. Bolognese for letting me continue with my life, because I would have never been the same.  Again if you are reading this and you have any question please don't hesitate to ask.
http://www.ninds.nih.gov/disorders/chiari/chiari.htm

This is me now, although day to day still is a lot of hard work, and I do get terrible migraines still as well as a host of other issues, I look much better and feel better about myself than I have in years.  I take things day to day and never let anything get me down because I remember, if it weren't for persistence and a doctor who finally believed me  and not thinking all this was just in my head, which by the way, it truly was, I would have been dead.  Live, laugh and love!

4 comments:

Anonymous said...

Hello everyone, by browsing internet recently I came into know about chiari malformation. http://www.chiarisupport.org helps me to learn more on Arnold-Chiari malformation. People are suffering not only physically but also mentally.

Unknown said...

Mentally is sucks having to deal with being sick on a constant basis. But if you are a strong person such as myself and many other chiarians you will overcome and move forward with your normal routine or as much normality as you can every day because if you don't just as any other illness it can break you down.

Anonymous said...

you are the only case ive found so far where the herniation is 25mm below all the way to c2 level...mine is the same and i worried as i had not seen anyone's the same, i got diagnosed nearly a year ago and my symptoms have progressively got worse as times gone on. im seeing a neuro specialist in october, you have also expierenced symptoms i have had and that i have not seen anyone else mention. i felt scared and alone but you have given me hope! i thankyou so much for that. bex x

Unknown said...

Anonymous,
Hi, just checking in, not sure if you are reading this or not, but hope things are going well for you. Wondering how things are proceeding along for you? I can tell you that I have many for symptoms that I haven't even written down, so keep a positive attitude and don't give up!!! Don't be scared, What state are you in??

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