Newbie

[ljturner5366]

Hi all,

I was diagnosed in October with a 9mm herniation. Saw an NS a few weeks ago, he has ordered a full spine MRI to see if I have a syrinx or tethered cord.  I also have to have a swallow test because I aspirate liquids sometimes.  If all the other tests come back negative he may take a wait and see approach, otherwise it looks like surgery for me.  I am hoping to avoid it but if it gives me relief it might be worth it!  My main symptom is headache with severe facial pain. I also have issues with the weather and take OTC migraine meds daily to get through the day. My ears righ, there's prerssure when I stand up, all the good stuff.  Glad to have found this forum!!

[selmaS]

   It is sad we have to be our own advocates and do the research and educate our Drs , but we do....and it is a good thing u did.....otherwise it could have been a few more yrs until ur Drs figured it out.

  "selma"

[ljturner5366]

My symptoms started in my early 30's.  I am 45 now. I started having the facial pain then and thought it was TMJ but the dentist didn't see anything then.  I was diagnosed with scoliosis at 11 and wore a brace for 18 months.  I do have a vivid memory of a headache when I was about 8 that was unbearable.

The Chiari diagnosis was actually first made in 2007 when I was being assessed for MS.  I had an MRI and the neurologist mentioned it (without using the actual words Chiari malformation) in an off hand way and said it was nothing to worry about.  This despite the MRI order that listed classic Chiari symptoms!  In any case I was diagnosed with a B-12 deficiency and some of the symptoms did get better with supplementation after a series of injections. Meanwhile the headaches and facial pain persisted, along with other symptoms like tinnitus, head rush when I stand up, vertigo, memory problems, word recall problems, etc...

I have been told over and over again by my primary doc that my symptoms are sinus related.  She sent me for a CT scan of my sinuses which was negative.  So I went back and said that the pain won't go away and she ordered another MRI.  It was when I got the cd with the scans from 2007 and the report that I first saw Chiari Malformation on the report.  And of course the 2011 MRI again showed it.  My primary had no idea what it means, she thought it was some kind of blood vessel problem and wanted me to see a neurologist.  By that time I had done enough research on my own to know I needed a neurosurgeon and I asked my primary to make the appointment and she insisted that I could see a NL.  So I finally called the NS in my area who treats Chiari and basically begged for an appointment.  Luckily it worked and now I am waiting for my full spine MRI next week.

[linnielou232]

Welcome to this forum and as every one else said.  This has been a lifesaver forum.  More than people really know.  It's so nice to come here and talk to every one when no one else can understand.  I wish you the best with your test.  Having Chairi is a life changing issue that changes our lives when we least expect it.  We are here together for each other.  Have a blessed day, and a Nice Thanksgiving.

[jiggle93]

Welcome! You are in the right place for support and information that you will not find anywhere else!!  This forum has been a life saver for me. Please keep us posted on your journey!
Jiggle93

[lgarcia7712]

You will love this forum, its the best there is! It has helped me cope with this disease and has prepared me for what's to come. I am having my surgery next week. Good luck to you.