Newly Diagnosed in TX

[MicheleTxRN]

Okay, first let me say I'm thankful for this forum. For the past 3 weeks I've been experiencing extreme dizziness, with no nausea. Rotational dizziness..which I knew was different, as I've suffered with motion sickness/nausea/veritgo my entire life. Vision problems have been related, blurriness and black spots, tinnitus present too. I've been off work for a week with no driving because my dr. thought I had acute labryinthitis. The dizziness got scary, so my Dr. ordered an MRI at my request. The results yesterday, "borderline Chiari Malformation Type 1". So, today, I'm researching to decided what to do, where to go, etc. My PCP set me up with a neurologist here in Waco for an appt. on Thursday, however, I'm thinking I need to see a neurosurgeon instead. I want  a couple of opinions. I do not know where to start with this. HELP!   Other symptoms: vague headache, vague neck pain (almost constant), Left arm and leg feeling heavy, achy, dull pain, sleeplessness.

[MicheleTxRN]

Thank you. Today I made an appt w/Dr. jackson..so thanks for your post.Do you mind me asking what your symptoms are/were?

[jreese7]

I'm from Oklahoma but went to Dr Jackson in Dallas. He was great. They said mine was borderline Chiari too and drs up here blew me off and Dr Jackson said he wasn't sure of it was causing my symptoms but ordered the tests that my drs hadn't. Don't give up when they say its borderline. It may be, and it may be something else causing your symptoms, everyone is different. But you never know. we found out it was blocking off my spinal fluid and pressing up against my brainstem. Im only a week and a half post op and I already feel better, it hadn't been easy and definitely a slow long recovery, so think hard about it before youconsider

[selmaS]

  Hi and welcome to the Chiari forum.

U r right in that u need a NS and not a NL, but u may want a NL that knows chiari and will do a few more tests b4 u go to the NS just to rule out other issues and conditions related and non related with similar symptoms.

It is very possible to have what Drs term borderline chiari as their criteria  is 5mm herniation when chiari is the malformation of the skull....the tonsils herniate as a result of the lack of space.

So by borderline it may be borderline for what they may think causes symptoms, but they should listen to the patient as u do have the symptoms.....so, something is up.

From what many Chiari specialists have learned is that  the size of the herniation is not a factor or should I say the length, but the width is, a small 2mm can cork it up if it is wider then a 13mm long thin herniation that still allows CSF to flow....

And many times we can have ICP,,POTS< disks issues ,, instability of the cerviaocranial junction which can cause many of the same symptoms, and a syrinx, sleep apnea, ehlers-danlos....so we have to be checked for all this plus thyroid and vitamin levels....it is a very frustrating and confusing lot of  issues that all are  connected.

We do have a lot of info and a list of Drs for u to use to research the list is not meant as a referral, it is compiled by the members of Drs they went to and liked, u have to see a few and decide which is best for u ...educate urself on what chiari is and what the related conditions r.

Please see the health Pages for info-http://www.medhelp.org/health_pages/list?cid=186