Welcome to my Chiari Page

Links

Here are some terrific information pages that I used.
INN

WACMA

ANNS

Information Exchange

NINDS

I guess you are probably asking yourself what is Chiari.
Well for starters it is a medical condition also known as
ACM or Arnold Chiari Malformation
Types I,II,III or IV.
There are several different types. Mine however is a I (one)it measures 10mm or 1cm. Chiari is a malformation in the brain. It is when the cerebellar tonsils are herniated and extend down farther than they should. That is where the 10mm comes in.

My Story

I was in a small auto accident in January of 2000.
I was running errands for the store only doing 35 miles and hour when some lady got impatient and decieded she didn't have to wait on noon hour traffic. Well guess what, Ya I connected with her. I was pretty shaky and really upset. I had been in a couple of fender benders before but not one that caused me to run into the other person.I felt weak and stiff but I didn't worry to much about it. I just blew it off and discounted anything but adrenaline. I went back to work the next day and felt a little stiff,but I just figured it would all work itself out.Until I got a odd feeling , I was running the cash register getting a ladies change and I noticed that I couldn't hardly make myself pick up the pennies. Discounting this to stress I went about my business, Well about 2 days later I was really hurting and could hardly move. I was still shaking a little but the real problem was my back was continously on fire,sweating like it was in a sauna and my legs felt like they were going to give out when I would try to walk. So I ended up at the ER. He took me off work referred me and sent me home with some flexeril.Well things were going ok, I stayed pretty much immoble not trying to do much.(Thank God for Good Husbands!) Then I went to my referal(5-7 days).She tells me every thing is looking pretty good (and it was)So she sends me to a chiropracter. Things there were ok but my back was feeling it needed popped it was really catching.Well I opened my mouth and ask for it, Honey I got it, It only took once for my back to pop in 3 places and all was done. They took me in the little interfarenchal room and layed me on my stomach.I loved the ultra sound and was getting pretty relaxed when the timer went off. Well time to get up,,, Hmmm oh my I CANT. uhoh what is going on. Okay now I am getting scared. I cant roll myself up. Call for the Doc would you please nurse something is going on.Well they get me up and my head is really pounding and is a little woozy. The Doctor is asking me some questions but I cant seem to comprehend what he is saying.They get me settled where I am feeling better and send me home. Well, now whatever is going on. It was Really going on.I am certainly not myself at all.I was feeling as if I was in some sort of tunnel and everything was a little tilted.I had stopped taking the flexeril when I started treatment. It had never made me feel like that anyway.My husband (God Bless Him) put his foot down.NO MORE Chiropractor.Well I was in agreement I felt worse that I ever had in my life and was certainly looking for reasons. The shaking had increased a hundred times and was painful and scarey.I could hardly walk at all.So I go back to the Doctor.She puts me on zolft(antidepresant) and sends me back to work.Well things just went from bad to worse there was no way I could work with such things going on and It felt as if an alien had taken over my body. I had to leave work after a couple of hours each day, totally played out and collapsing a couple of times feeling as if my throat was closing off my air and unable to move because I pushed myself so much. So this Dr. sends me to a neuorlogist to get and MRI telling me she wants to check for parkinsons.So I went back off work and in a couple weeks went to see this neuorlogist.I had been getting alot of rest because I was feeling so fatigued all the time.So of course the new Dr. didn't see much of anything. Tells me it is anxiety and possibly a thyroid problem and sends me back to work (no MRI). Feeling totally out of control and depressed I went back to work. Nothing had changed though. I was still very weak and the tremors were scarier than ever.I was all I could do some days just to get in an upright position, never mind about being on my feet constantly.Well, I got a hold of the work comp. nurse and she sends me to a bone Dr. He was great! The second visit got me a MRI.When we went back a few days later he looked at the MRI report and said he didn't know anything about it one way or the other, so he was going to send me to a neurosurgeon in the City. Well that was going to take about a month.So when we got home, I got busy."You can find everything on the internet" I told my husband and I was determined to know what this Arnold Chiari malformation was. I thought in all terms like it meant I was a little slow at learning or something. Boy did I get a wake-up call.The first site I went to gave me almost everything I was experianceing. I was relived and scared all at the same time. Finally after 3 months of thinking I was on the verge of a breakdown I see what my real problem was.But then again not knowing what this would lead to.It hadn't said much about the tremors(which was a Main problem)So I kept on searching. Finding everything thing I could get my hands on before my appointment with this neuorsurgeon. Printing it and keeping it in a file.Finally we traveled to the City for my appointment. Only to be disappointed. This Dr. tells me that the things I was experienceing was in no way related to the Chiari and quote"the herniation is a very tiny 10mm and is not a result of the accident" Okay , I had read enough to know that the Chiari was not the result of the accident, but the syptoms didn't start until then. Dr qoute "go to this Physical Theripist and If you are still having problems in 6 months come and see me. I would love to do this surgery." Ha Ha Ha was all I could think. Like I would let him just do the surgery. Why would I? My symptoms isn't even related to the Chiari so he tells me, why on earth would I want a surgery to cure the syptoms if It isn't related?? Needless to say I was very upset.My syptoms were getting better, but it was only that I didn't do much of anything. The first time I cleaned out my closet(on a good day)They all came back and attacked me. I have just about figured out a happy medium. As long as I don't do any picking up,carrying,bending,stretching,walking very far,sitting very long,pushing or pulling, and a lot of resting, I am ok. Otherwise my head pounds and my eyes burn and jump.my legs give out and If I don't watch it the tremors start. Tell me of how someone without a collage degree(me) can find so much about Chiari and a neuorSURGON is completely oblivios? However, I am still doing the physical therepy (which I hate) and Have another appointment with the physiatrist on the 06-02-00 Hoping to blast him with information about Chiari and all I have learned. I only hope he will stop thinking for half a second and listen to me. I did some checking on some Dr's that are well versed with Chiari and was told that Dr. Ellen Hope in Oklahoma City was very good,(information from a neuorsurgon I e-mailed) He says she is the best in the state in dealing with this. I contacted her office and was surprise to find the only opening she had was in August.
I am saving my cancelled postage stamps,also in the process of informing others to save theirs, family,friends,churches and just individuals that might want to help. Follow my links for more help in the uncovering of facts about this malformation.

Good Luck and God Bless.

Okiemom

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