New diagnosis to me. What is it?

[Stargazey]

My phys. just called me and said He says I have Chiari 1 malformation.Because the posterior fossa have low lying cerebellar tonsils that extend 5mm below the foramen magnum.  There is partial effacement of the CSF within the foramen magnum.  So.....he just said go and see neurosurgeon. So how did this happen? All the past lumbar surgeries? Trauma to spinal cord during surgeries?  I have so many questions, and of course no answers.  So, if there are any other people out there with similar dx. or if there is a phys. who audits this. Please help me.  I don't know what to expect. All I  do know is I have a constant migraine (Imitrex doesn't seem to help) I am allergic to pain medications. I only take Soma for back pain. I can't remember things, like when did I get up and did I take a shower.
I ask the same question several times.  Cannot seem to say the word when I want to. I like on misfire. It is so frustrating.

[selmaS]

Well if u do decide to go to Colorado...u should deff see Dr Oro.......u'll be in very good hands.

"selma"

[Stargazey]

I guess could go to Colorado, have daughter in Denver, and I have one in Roanoke, Va.
have friends in Calif. Thanks :) for info, i'll check it out. "Stargazey"

[selmaS]

I tried looking up a list of chiari drs...below is the link....however the drs listed were not reccommended by their peers or patients nor r they recognized as chiari experts.....it does not appear that there r any in AZ........where can u travel to??

http://www.pressenter.com/~wacma/arnie.htm


"selma"

[Stargazey]

Yes, he was really very funny.  Thanks for the encouragement. It is really nice to have others that are experiencing the symptoms at one time or another. Just trying to stay
positive, and not fear the unknown.  I think that's what worries me.  I know what to expect with back surgeries (had 7) with 12 harrington rods and screws.!! But, the brain is a different animal!! I don't know if I trust any Dr here to just go whilly nilly in there, and practice!  If anyone knows of a neuro with experience in this here in AZ please let me know.  Thanks anyway. Have a good day selmaS :)  

[selmaS]

...lol....laughter helps....ever see Victor Borga(sp?)...he is very funny....good luck on the 29th!!! keep us updated.....and if u need to talk....I am here.

Godspeed
"selma"

[Stargazey]

GM!  its 9:02 am here in AZ.  I will be seeing a Neuro on Oct 29th, was scheduled after Pain Med Dr. did MRI and found Chiari.  I already have an appt with a Neurosurgeon, because of ruptured discs in neck and thoracic spine.  Had all this going on before I dx of Chiari.  Its all to overwhelming.My back hurts all the time.Then the migraine type headaches don't go away even with Imitrex. Then the memory. And I cant seem to speak, the words are in my brain, but wont come out my mouth. I lose everything! Pain in arms, and I fall alot. I tell you this old body is shot.  Can I trade it in?  Thanks for listening out there.  My family thinks I have major CRS (Can't remember sh- -! ) My husband says its RCRS!!!  Oh well, trying to laugh!  Cause I seem to cry alot.

[razzle5150]

I answer your post on Live journal . Remember if you have already been diax  you need to see a Nerusurgeon not a Neurologist.

[Stargazey]

I read the poem.  Thanks. it was on the mark...I feel like I can't go through another surgery..I'm scared...But it is difficult to think right. My eyesight is getting worse. I squint all the time. Peripheral vision is bad.  I went to Mom in laws and helped with a garage sale,and spent the night, but in the a.m. couldn't remember what time I got up and took shower. I ask her, she said I did & cleaned the b-room and wiped everything down.  Funny, I told her I didn't remember!  I was just concerned that I didn't run around the house naked in front of the bro. in law.  Ha Ha.  Guess its not funny. Oh well. Thanks

[Stargazey]

Thank you.  I have been driving my children nuts, cause I'm on the 'puter so much. The information you shared is greatly appreciated. I live in Arizona (Cave Creek to be exact)
Near Scottsdale. Thanks for the encouragement.:)  My daughter just told me "You have to get off the computer!!" Funny how things turn around, HA HA.  She is studying to be a nurse!!  I'll read the poem. Wasn't born with this, I don't think.  I wonder if all the spine surgeries caused this? I will be seeing a neurosurgeon on Nov.5th. He was going to address ruptured discs, in my neck and thoracic spine. This chiari thing, just happened
dx that is, because I have had memory loss. So pain mgmt. doc sent me for a MRI.
That's when they found it. Thanks again, Mary

[Shane99]

Welcome to the boards. This is a good place for info and comfort.

I'll try and give you a little primer on what's going on with you; Chiari 1 is a congenital malformation of the brain - you were born with it and over the years it's gotten larger.

Basically, a part of your cerebellum (lower-back part of the brain) is expanding out below your skull into your spinal column. This is called a cerebellar tonsil herniation.

Right now, it's at 5mm - around a 1/4 inch. that's not too bad, but it most likely will continue to get worse.

This can cause problems with sensory perception, balance/coordination, memory/concentration and other issues. If/when it gets larger it may start causing problems in the spine - blockages of spinal fluid called syringomyelia (or syrinx). This can cause more serious issues - including paralysis if not taken care of.

Chiari isn't really considered life-threatening, but it is life-changing. There is no cure for this, but there are steps that can be taken to lessen the symptoms. Talk to your doctors. Surgery is often needed, but some people prefer to try other ways first.

Like Selma said, make sure you have a Chiari specialist as a neurosurgeon. This is the most important thing you can do at this point. Not all neurosurgeons are specialists at this.

We know what you are going through - to a point. Everyone is, of course, different. A lot of us have had, or need the surgery, or are parents or loved ones of Chiarians. I only found out I had chiari six months ago. In fact, today marks 6 months - my surgery was April 23rd. My herniation was 20mm, so I had to be operated on quickly. Hopefully yours isn't so bad and things can be done to help you manage the pain and memory issues.

Good luck and keep us informed. If you need to talk, a lot of us check these boards daily or at least several times a week.  

[selmaS]

There are Health pages to the right of the screen...scroll down u'll find it and read thru.....chiari people generally are born with it...a trauma can cause symptoms to be more noticable....it all depends on whom u speak to...I also have chiari and am searching for relief...there r many here who have had surgery and many like myself who have not....the number one thing u will learn is u must have a chiari specialist......where do u live?...try web sites like ASAP D o T O r G......and the chiari institute...the institute is in NY and r experts....I have a poem by Dr Oro in my journal that goes to show...there r drs out there that understand.
Just know u r not alone......if u need to talk-I am here.

Good luck and
Godspeed
"selma"