Chiari I Malformation and Punctate Hyperintensities

[busymom40]

I was diagnosised with Chiari I malformation about 7 mm in 2009, but the neurologist I saw played it down, so I've done nothing.  Recently my 15 year old daughter was diagnosed with chiari I malformation 12-14 mm and had decompression surgery last week.  I recently had another MRI, stating no change in my chiari I,but a few punctate hyperintensities scattered throughout the brain on the flair images, and possibly a small thornwaldt cyst, etc.  I have headaches every day and some days feel like my head is in a vice being squished.  Jaw pain and neck pain.

I live in a rural area and would like advice of specialists in my area.  Walla Walla, WA 99362 - Milton-Freewater, OR 97862

[selmaS]

  Hi and welcome to the Chiari forum.

We do have a list of Drs the members here have been to and liked, not all Drs on the list may be true Chiari specialists, but it is a place for u to start researching Drs to find the right one for u.The list is on the forum and in the health Pages, here is a link- http://www.medhelp.org/health_pages/list?cid=186

May I ask y u r not going to use the same NS that did ur DD's surgery? I do not understand y she had surgery and u did not, it is not the herniation but if u have a CSF obstruction and how it is affecting ur overall health.

  Know u r not alone, and we will try and help u with ne questions u may have.

[ceo83]

I m sorry, you are feeling so treadful.  if you dont mind me asking , ust wondering why you havent gotten surgery back when,  you were diagnosed. Did the neuro, not feel it necessary at the time? Are where you asymptomatic?? HOw is your daughter recovering going so far??

I know there is a list on the health pages for people looking for specialist. You most likely wil have to travel.

I have a neuro appt today, and I am a wreck, is my second opinion and I am terrified to be blown off again,  Worse yet, doubt my own sanity.

I have question for you , maybe you can answer does the herniation extend further as time lapses, or does it stay the same.