Chiari?

[klottey4]

Hi All,

I have been reading everyone's messages, and you all seem so wonderful and helpful towards each other.  I am 29 and 7 years ago I woke up with pain at the base of my neck.  Over the course of a week it got worse and alternated b/w pain and numbness on the right side.  Plus, I was dragging my right leg and had worse motor control along my right side.  Since then, I am on TONS of narcotics (Avinza-long acting morphine, Actiq-BT pain, Neurontin, Zanaflex, Topomax, Dilaudid) for the neck/headache pain.  I worked hard in PT and got some of the gross motor back, but not really the fine motor or ability to balance.  Then, about 5 weeks ago, I woke up one morning and over the course of a week I lost control of the right side of my face (crooked smile), bad pain/pressure behind my r eye, worsen strength in my r side, poor speech (stutter/slurred/can't recall words) and horrible vertigo, nausea and balance issues.  They hospitalized me thinking I'd had a stroke and couldn't find one, and they viewed my MRI as normal.  I had a LP on Friday and am working on warding off the low pressure headache that keeps creeping up whenever I stand up.  I got the CD for my MRI and I think there might be a small herniation (maybe less than the normal 5mm).  I've been doing my research, and know that the real experts say it isn't as much the herniation as the flow of the CSF.  My neuro said, "I'm a stroke doctor, I'm not as schooled in Chiari, but I'll go back and look again. I don't think it is that, though, because you only have weakness on 1 side."  My questions are this:

-Can weakness be one sided?
-Can you have a few symptoms for several years, and then a sudden onset of new ones?

I'm looking for a neurologist and/or a neurosurgeon who I should see, just so I can r/o or r/i the diagnosis.  My family is extremely supportive and will do whatever I need.  I've even had a psychiatric exam at the recommendation of a very rude neuro I saw in the hospital a few weeks ago. thanks and best wishes to everyone!!

Kathy

[selmaS]

Hi Kathy, I have no idea what this could mean....may I ask y u had the LP for?...what was the drs reason for doing one?

I pray all is alright.....please update us when u can.

Godspeed
"selma"

[klottey4]

So, last Friday I had a spinal tap.  I thought I'd avoided the tap headache, but I didn't, and needed to get a blood patch Wednesday.  On Tuesday, when I saw my GP, they tried to get preliminary results of the tap, and G'town Hospital said they couldn't find the fluid.  We (my doc and I) were livid.  He told me not to worry about it, he'd take care of it.  I trusted he would, and went on with my week, getting the patch, and feeling better.

This afternoon I get a lengthy message from my neuro.  He says that they found my fluid.  The first round of tests came back ok, but the second round had some abnormal results-there were more inflammatory cells than expected.  He said not to worry, but he is admitting me to the hospital. No more info than that, cause it was a message.  I'm waiting for him to call me back to tell me when to go. They will be reviewing my MRI more to look for Chiari and other stuff, and I'll have a couple other MRI/images.  

Anyone know what it means if there are elevated inflammatory cells in the CSF?  

[selmaS]

Hi Kathy,

If by ins u r referring to TCI in NY...they do take ins...it is the NS that does not for the eval.
I was just up there the end of March and am scheduled for TC release at the end of this month.Use the web site contact us page and look up the person in charge of billing..I am sure they can explain how it is all done.

Which ever u go to NY or CO I know u will have great drs...I do not know that much about WI....it is a newer facility and not too many reports on outcome ect.

I have a friend down ur way she also goes to TCI in NY...she has a blog if u r interested....ylaurie just google that u will get her.Let her know if u choose to contact her that I referred u to the blog.

U r welcome and u have a great week too !!
"selma"

[klottey4]

Thanks, Selma!

I appreciate all the good information.  It seems to match what I have read about, just not what the neurologist I have been currently seeing said.  I was referred to him because my GP was convinced I'd had a stroke.  My GP is most wonderful, and also is a pain mgmt specialist and does acupuncture.  he has been my saving grace over the last 7ish years.  

I live in Northern Virginia, just outside of DC.  I have sent my information to some of the larger centers (NY, CO, Wisc), to find out about whether getting an appointment is worth my time withouth a diagnosis.  Although I'd love to stay with one that takes my insurance, it isn't a deal breaker.  If you have any other suggestions, I'd gladly take them!! :)

I am anxious to get some information, keep working hard, and get back to work as soon as I can.  I love what I do, and miss it terribly (I'm an elementary special education teacher).  

Thanks, and have a great start to the week!

Kathy

[selmaS]

Hi Kathy and welcome to the Chiari forum.

From what I have heard from others it can be one sided.In fact, I told the dr I had more issues on my left side...he told me my herniation was longer on my left.

5 mm herniation is considered Chiari I......u should have a CINE MRI for the flow study and also be checked for a syrinx, tethered cord, and  it is a possibility that u might have excess fluid pusedotumor cerebri.This might explain ur issues when u stand up.

We do have a thread with a list of chiari specialists.....if u need help location it let us know......or just let us know where u live so we can suggest some drs for u to research.


Please keep us posted on ur progress.
And please do not get dicouraged by the rude drs....read the poem by Dr Oro.....it gives us all hope that there r drs that understand.

"selma"