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My Journey With Chiari Malformation

Diagnosis and the Doctor Search
About Me
Diagnosis and the Doctor Search
Consult with Dr Milhorat
The Chiari Institute
Posterior Fossa Decompression Surgery
Another hurdle
Surgery 2, and Life After!
Contact me

Learning about the stigma of Chiari patients, having to convince everyone that I wasn't crazy!

In February of 2000, I went to the dentist.  It was a routine bridge fitting.  I had braces for three years, as treatment for TMJ (a jaw joint problem).  This appointment was after the braces were off, to get my new bridge put in.  Well, my temporary bridge would not come off.  It was on the lower left molars.  This dentist pounded on it on and off for a half hour, making my entire head reverberate each time. It finally came off, but I had a terrible headache for three days.  I could do nothing at the time, because it was Valentine's Day, and I was a florist (fourteen hour days).  I simply took asprin. 


The next week the numbness started, in both of my big toes, of all places!  It was odd, but I ignored it for a while.  When the numbness started to spread and did not go away, I went to my doctor.   The numbness spread rapidly up my legs, so my PCP ordered an MRI, thinking tumor. I had brain and neck done. 


I was then sent to a Neurosurgeon, not knowing what the results of the MRI were.  My then husband and I saw the NSG's assistant.  He diagnosed my chiari because he recognized it, having seen it on 20/20 recently!!  He knew nothing about it, told me to go on the internet to learn something, and that I could see the NSG next week. He told me the only treatment was surgery.  I asked him to write it down for me so I knew how to spell it. My ex-husband rushed back to work. I made the next appointment, and left in a daze.

I went home and started researching.

I found NO books on the subject.  Thank God I found the WACMA and ASAP pages (see links).  I read every word on both pages (however I still do not have the courage to look at Chip's surgery pictures). I managed to write down some questions, and printed off the list of questions to ask your surgeon off the WACMA pages. I did not know how to pronounce these words and did not know what anything was.  ("Doctorspeak" is still a foreign language to me, but I can now speak enough to get me in trouble!!) 


My next NSG appointment came up, and my then husband came with me again. I had listed what I thought were my symptoms, and had my page of questions.  At first, he seemed very nice.  He took us in to a viewing room, and showed me my MRI.  He pointed to my Chiari, and also showed me some cervical stenosis (an arthritic narrowing of C5 in my case).  He wanted to do a laminectomy of C5 first, because of the "surgery positioning" (which I later learned could have put me at risk for a stroke because of my brain tonsil). After that surgery, we could see how my symptoms were, and then talk about decompression.(posterior fossa decompression, the surgery for chiari) 


 I started to ask questions.  While I was looking down at my papers, my ex-husband caught the NSG rolling his eyes!! He did not like the fact that I was questioning him, and his attitude changed, fast. I asked him how many decompressions he had done.  He said five!!  (There was no way I wanted to be number six.)  I told him that I wanted a second opionion.  I was going to the well known University hospital.  His exact words were, good luck getting in there. By this time, he was downright surly.  We gathered up my stuff and left.  My ex-husband was so mad at the treatment we had received, he told me HE would operate on me before that guy would ever touch me! (he is NOT a surgeon)  It did not go well. This was April, 2000. 

I realized I was in for the long haul. My symptoms were progressing, and I was learning more all the time from the chat board on WACMA/Yahoo. I was meeting some wonderful, smart, experienced "Chiarians".


Through a family contact (thanks again) I managed to get into the University hospital somewhat quickly(for them). We ended up waiting three hours for the NSG on the day of my appointment, because of an emergency surgery. His assistant came in first, asked me some questions, and he rushed in. He saw me for exactly ten minutes.  He asked me how I had gotten in to see him, said I looked fine, my "insignificant" herniation could not possibly be causing my symptoms. He referred me to a Neurologist there, and rushed out. His assistant sent me on my way. I was so mad, I kicked the tires on the car, and swore for a good half hour after that.  


 Because of the referral, I got into the Neurologist a month later. I had an EEG, an EMG, and a basic neuro exam.  The first word out of the Neurologist's mouth was that he knew nothing about Chiari. (a bad sign).  His conclusion?  I was depressed. My depression was causing my symptoms. My chiari could not possibly be causing my symptoms, my heriation was "insignificant" (sound familiar?) He put me on Elavil.

Well, again I was furious. I took that useless Elavil for a month (August, 2000). It was terribly hot, and I had a lousy month, spinning my wheels getting no where fast. I had stopped working because of my symptoms. The Elavil did nothing but my headache severity increased. I knew I was not depressed, and I had to do something.


I called a psychologist friend.  I explained my situation, and asked if there was any way he could determine my emotional health.  If I WAS depressed, I wanted to know it, and that would be easy to fix, right?  He suggested a test called a Minnesota MP3. I was very willing, even spent my own money on it.  It is almost 600 multiple choice questions.  They range from "Do ghosts tell you what to do?" to "Would you enjoy fixing a door latch?" I had fun taking it because of the goofy questions!  Of course, it showed that I was normal, whatever that is, not depressed at all.  I recommend it highly to anyone who experiences the Chiari "stigma". 

By this time, it was fall. My family suggested strongly that I see a "highly respected" NSG in my hometown.  I agreed.  By this time, I had a notebook of articles on Chiari, symptom lists, test results, letters from the doctors I had seen, you name it.  I brought my notebook and MRI's to the appointment. I wanted to be accurate in what I told him,and was having memory problems. 


He flipped through my MRI's as I asked him questions.  He rushed me as I search my notebook for answers to his questions.  I showed him the results of the MP3 test stating that I was not depressed.  He read it and dismissed it.  His exact words were that "If you search long enough you will find someone to operate on your head, but that's not what you need." "You do not even have Chiari."  In his letter to my PCP, his words were that I had "functional difficulties" and that I did not have Chiari. In Doctorspeak, that means I am crazy, and can not function in society. Ouch. 


I was furious, and convinced that there must have been a missing MRI, because I had SEEN my Chiari, the first NSG had shown it to me, and I knew it was there.  There was a misplaced MRI, but by the time I had copies made I had ruled out ever going back to that creep again.  My PCP was shocked at the language in his letter, that NSG did me no favors.


By this time, I was determined to see a well known national specialist. I was through with local doctors.   From the WACMA pages, I had narrowed it down to two choices. I did further research on surgical techniques, because this is NOT standardized surgery, every NSG does it a little differently.  After much careful thought, I chose Dr Thomas Milhorat in NY. At the time, his office was in Brooklyn. I made an appointment to see him for a consultation.