My name is Michelle Danker. I'm currently 34 years old - and I have Arnold Chiari Malformation. Funny - you type that into MS Word
- and it says you are misspelling that - Chiari. OOPS - there I go again - misspelling that word. Chiari. Well- that is what I
have - like it or not.
I was diagnosed with ACM1 in 2001. I was serving in the US Army at the time. I had just finished running the Disney Marathon and
otherwise pretty darn healthy. My only problem was that I kept getting these stiff necks and my back was aching. I started getting
bad headaches that were getting more frequent.
This had been going on and off for 4-5 years - and each time I'd go to the doctor, I would be told to lose weight, take a vacation
(being in the Army is a bit stressful), see a counselor, etc…. X-rays would always be negative, thyroid tests would be negative -
nothing would show anything.
Finally, one morning, I woke up for our daily Physical Training (PT) - and I could hardly move. My neck was so stiff - I really
don't know how I drove to work. Needless to say, I made it to work, but then went to see a doctor. They, of course, gave me
Motrin, told me to suck it up and drive on. I asked to see someone else.
By this time, I was in major pain - and really couldn't move. Luckily, I knew someone, who knew someone, and they got me an MRI.
That was the magic trick. Seriously - if I didn't get that MRI - I would have never found out about Chiari. The doctor who
ordered it was an Orthopedic Surgeon, and he was the one who spotted the Chiari malformation. Right away, he called the neurosurgeon.
It was like a whirlwind - and my head was spinning. I had NEVER imagined any of this could happen to me.
If any of you have heard of Army medicine - I wanted a second opinion before a doc was going to cut into my head. Well - any of us
want that with any medicine. I got my second opinion - and needless to say - the decompression surgery was what was needed. No
promises were made - but I'm here to tell you, Dr. David Floyd did a good job. I believe he is over in Iraq right now - God Bless him -
he's a great doc - and he did a good job. He told me that this surgery stops the progression of the Chiari - it does not CURE you.
And he is exactly correct.
He first did a C5/C6 fusion in May and then he did the decompression in September of 02. I can tell you that I led a relatively
symptom free life after both surgeries. What that means is that yes - I had headaches. Yes, I had backaches. Yes, there were
days I felt like crap. I did develop two small syrinxes that have not grown - but they have not gone away in the past five years.
Did I make the right decision about having the surgery - 100% YES!
Here is how I know……Since the surgeries - I have had three BEAUTIFUL children. They were born in 03, 05, and just born in 07.
I didn't have bad pregnancies - the first one was the easiest - and then they progressively got harder. (Which I do hear is normal,
Chiari or not) My OB's were informed about the Chiari - and the only time that really came into play was when it was time for anesthesia.
It was REALLY hard to get the epidural in - and the anesthesiesiologist did not like me. I was stuck over 5-6 times with each kid.
Apparently my spinal canal is a bear. (With degenerative discs, scoliosis, syrinx, and partridge in a pear tree)
Other than that - Chiari did not have a role in my childbearing. (Or none that I know of at this time) I just hope and pray that
my children TRULY do not have to go through this. I would go through this a thousand times over before I'd have to see them go through
any of this!
But - a date that will live etched in my mind….DECEMBER 31st, 2006. I was cleaning the house before my husband's friend was coming
over for a couple of drinks to ring in the New Year - and I whacked my head on the kitchen counter. I saw stars. Then the pressure.
Since then - I have had THE CHIARI HEADACHE. I was 9 months pregnant at the time - so there was very little they could do for me as
far as testing and pain management.
And thus, the cycle starts all over again.
Where does the story go from here?? I'm not sure. I know I have beaten this before, and I will do it again. The only problem I see
is I'm facing a battery of ALL NEW doctors. Each one wants to diagnose me with his own new diagnosis. I have my diagnosis - it is ACM.
Just because I had the surgery does not mean I am cured. I have already had that discussion with my primary care doctor - who said I
have Fibromyalgia. I'm sorry - to me that is just a catch all diagnosis. I didn't get a hole cut into my head for a catch all diagnosis.
My long term plan is to eventually go to The Chiari Institute. That wasn't around when I first had my surgery. (Back in the day…..)
It will be nice to talk to folks who don't give you that look - you know the one - when you say Chiari - and then you are asked to
Till then - hang in there - if you are reading this - you found the right site if you have been diagnosed with ACM! This will give
you the RIGHT info and hope! Just don't get bogged down in all the info! Read it, learn it, don't live it - that is what your life
Michelle in Leesburg, VA
C5/C6 Fusion / Decompressed in 02
I am an ACM patient. Six years ago at age 44 I went, in a month's time, from being a fitness instructor, to being bedridden!
I experienced most of the "standard" symptoms: headaches that wouldn't quit dizziness, vision problems, blackouts, general malaise,
drop attacks, vomiting, etc.
All of this was attributed to a severe sinus infection, by SEVERAL, professions that I dealt with. It was treated accordingly!
Needless, to say, the results were not good. Finally, when I developed grand mal seizures and had to be taken to the hospital by
ambulance in a 911 situation, other potential causes were considered. Possibly a neuro problem????.. Duh!!! After a C-scan my
friendly neighborhood neurologist announced, almost gleefully to my distraught husband, that he had found the problem! A tumor
in the 4th ventricle! Not necessarily, great news to us!
Wrong again... Fortunately there was a new neurosurgeon in our hospital…my current nominee for sainthood…who felt the symptoms
were not those of tumor, and ordered other tests. MRI, etc! Sure enough She found ACM and with hydro thrown in as a bonus.
Ooops, the success part!! Seriously…with surgery (8 hrs. initially) and the later addition of a VP shunt... I went from being
totally out of it (had 3 seizures during the first MRI. It took them forever to finish it!) to now, where I really feel that
I have a VERY good quality of life. I hesitate to say normal…there are a couple of little deficits... but nothing that can't be
fairly easily compensated for. I do essentially everything that I was ever able to, including to continue to play competitive tennis,
with good results. I've resigned myself to no bungee jumping, but such is life. About the only things I have really eliminated are
horseback riding (the possibility of a fall on the shunt area is too great) and amusement park rides (just really don't feel great!)
My feeling is…if these are the main changes in my life…it has been a success! Granted I get tired a little more easily and the short
term memory is not what it used to be…but these are also complaints of friends in the same age group, so who knows??
I would be glad to answer anything I can, or just talk about this "fascinating" topic!!!
Just wanted to mention…This is the “Success Story” that I wrote 10 years, ago with just a few modifications. I thought that I would
keep this orignal text as it was written with the sentiments that I had closer to my initial surgery. I thought that it might be
more relevant this way.