Page 6 Success Stories

If you have a Chiari success story that you'd like to share, just CLICK HERE and send it in !

Mignon's story:
It was very important in my decision to have the surgery that there are success stories.   That is why I would like share my story with everyone who happens across this web page.

I had been having symptoms all of my life.  They were extremely mild and I chalked it up to being 2 1/2 months premature.  But in August 1998 different things started happening.  I started having these weak spells, days that I just could not get out of bed and I just generally felt like there was no way I could go on.  But these episodes as I call them would only last a short time
and then I would feel what I felt was 'normal.'  For as long as I could remember my life side was less sensitive that my right side. I ignored this, thinking it was normal because I am right handed.  One thing that was constantly getting worse was my lost of balance and my tipping (I would just fall to one side).  Well, on Sept 14th I had one of my weak spells and I passed out.

Well, now it was time to go to the doctor.  I went in that next afternoon and had a battery of test ran and they showed nothing was wrong.  My primary care doctor felt that it might be an inner ear problem and he sent me to an ENT (Ear Nose & Throat) doctor.  After a number of test he ruled out any inner ear problem and referred me to a neurologist.  So, in October of 98 I go
into see the neurologist and she does all the in office test that they are famous for.   I some times refer to them as the preschool/drunk driving test. Because you will see the same things happen on the yard of a preschool and on the side of highway (walk on your toes, touch your nose) haha!

She scheduled a MRI for Nov. 17th.  On Nov. 18th, I received a call from the doctor's office telling me I have what is called Arnold Chiari Malformation.  This was a shock to my system.  As the doctor gave me a summary of what ACM was, my mind was a total blank.  I did not hear what he was saying, but I was writing everything down.  It's funny how you react when you find out something is not what it should be.   I walked around in a fog for a couple of days and when I came out I decided that I had to find out what was going on and how I could get through it.  So, I logged on and found different sites that were dedicated to Chiari. The information I read was bleak at best.  I was determined to find out more and I found Chips web page and his success stories.  This helped me SO much. To me they represented the outcome that I was going to have. 

After seeing a neurosurgeon, who did not hold his tongue about what could happen if the ACM was left untreated and the prognosis after surgery I also talked to other who have had the surgery.  I decided that the best way for me was to have the surgery.  My surgery was scheduled for Feb 4, 1999.  As the dated drew near I was scared of the surgery.  I KNEW that I would be okay after the surgery, but I was scared of the surgery itself (as if I had to perform it or something). I voiced my concerns and this really smart guy told me to look at this way 'you go in, you go to sleep and when you wake up it's done.'  I spent 6 hours in pre op before I went into surgery and I kept telling myself that quote.  My surgery lasted 5 1/2 hours and I joke with my surgeon, that the reason the surgery lasted so long was because I have a huge head.  I spent about 2 hours in recovery.  The first thing I remember when I woke up in recovery was asking the nurse what time was it.  I was out again before she answered. I then asked her where was my mother.  My third question was can I call my mother.  After
the third question I guess they figure I was fine seeing has how I wanted to make phone calls. 

So, I was moved to a private room that was filled with family and friends who waited anxiously for me to make an appearance. Needless to say I was in and out of consciousness for a few hours.  I was telling my friends what happened in pre op and by the time I was half way through my story.  One of my friend explained to me that my mouth was moving and nothing was coming out.  Her exact words were "Mignon you are rambling and we have no idea what you are talking about."  So I gave up and went back to sleep.  I was later told that I would chime in every time my name was mentioned even though they thought I was sound asleep (I was snoring).  The first few days of recovery were THE worse and I often thought that I made a mistake.  But it passed and here I am ready for the world.

  I am doing everything I was able to do before the surgery and some things that I was not able to.  I now have complete control of my left hand and my balance is great. The symptoms that we were trying to prevent from getting worse have either gone away altogether or have been improving.  I am 26 years old and I plan to lead a full life.  The ACM had me out of commission for about 6 months but now I will control it and not allow it to control me.  If you would like more details...as if I haven't give enough already you are welcome to email me at mdt727@aol.com.  I hope everyone out there finds the treatment they need and I hope you find caring doctors like mine. Mignon

Hello everyone, my name is Kim Butler and I live in Portland, Oregon, I am 37 years old.I was diagosed with ACM in 1996 and I had decompression surgery on June12, 1998.
   I have always had ACM symptoms but did not know it.  I had horrible migraine type of headaches since age 3.  The pain was debilitating with severe vomitting.  I also had very cold hands and feet all of my life. My parents tried desperately to find out what was causing these headaches. They took me to one specialist after another.  At the age of 10 I finally had an EEG because the doctors thought I had a brain tumor. They finally decided I had migraines, even though I had no family history.
   Later, when I became a teenager, the doctors even tried hormone therapy in hopes that it would help my headaches, but it did not. Then, my doctors decided to try all of the new migraine medications that were out on the market and none of them worked.   They only two medications that would help were percocet and demerol shots. When I turned 30, my headaches started to change.  They became more frequent and started in the back of my head.  The vomitting became uncontrollable.  At this time I also had unexlplained dizziness and ringing in my ears.
   A couple of years later I started having neck pain, right arm pain, pain across my upper chest, wild temperature swings, and numb hands and numb feet. Luckily I had a wonderful PCP with my HMO-Kaiser - Dr. Yoshinaga.  I told Yosh that I thought something physical had to be causing my headaches.  Call it a "gut feeling" but I always felt that I did not have migraines and that it had to be something else.   God bless Yosh, he tried every medication and ran every test I asked him to.   He was also
very understanding about my pain and was not afraid to deal with it.
   Finally after eleminating everything else (carpil tunnel; thoracic outlet syndrome; fibromyallgia;) he told me he thought I had MS. I had a brain MRI and it came back negative for MS.  But, the tech took the MRI low enough that is picked up the ACM.  I was called back in from another MRI and it confirmed the ACM.  It was about this time I found the support group.  When I told Yosh about the possibilty of a syrinx he ordered a full spinal MRI.  It came back negative.
   After spending much time with the support group and doing a lot of reading about ACM, I decided to have the surgery. Kaiser referred to OHSU and Dr. Kim Burchiel head of the nsg department at OHSU performed the surgery.  The surgery went well.   It only lasted 3-1/2 hours and I was only in the hospital for 4 days - 1 day in ICU. I did have some minor post op problems, a CSF leak, but it cleared up. It took a few months for the CSF leak to resolve itself, but my latest MRI taken on 4/3/99 should it was healing up nicely.
I strongly recommend the surgery.  Almost all of my symptoms went away immediately after surgery.  And I only occasionally have a headache. My herniation was only 5mm, but my CINE MRI should a severe compaction in the back of my head.  Everything was pushing down on top of my brainstem.  My nsg also told me that I had little, if any, CSF flow on the right back side of my head.
I returned to work full time 8 weeks after my surgery and I have been able to live a more normal life.

Please feel free to email at:  tylert@hevanet.com if you have any questions or if you just need some moral support.

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