Looking for a Chiari specialist in San Francisco Bay Area. Please help!

[MissJoanne]

After a chiropractor adjusted my neck, it all began. I was hospitalized with so much pain and was released from Stanford hospital saying I had Chiari Malformation 8! Saw another NS and said it was really only a 3 or 4 and that I was not bad enough to need surgery.  Two years later I'm still suffering with neck pain, headaches, dizziness every time I stand from sitting, body weakness, pressure in my head, and fullness and pressure in my ears, I'm not myself anymore. Some days are worse than others, but every morning starts the same way. I always feel worse after I've slept, it seems that lying  down puts pressure on the nerves in my neck. If anyone can help me find a great doctor in the San Francisco Bay Area or California I would be forever grateful.
Thank you, Joanne

[selmaS]

I am not sure why  you  refer to it as  a #8...it  does not  matter what  the  size is...only  if you  have  an obstruction of CSF and how it is  affecting your overall health....

  There are  many  Drs  really  not well informed  or  experienced with Chiari....

  Stop dwelling on  the  differences....and  find  a true  Chiari  specialist...get  more testing done....if you  keep  with  the  Drs   you  have  you  will stay  confused   and very frustrated....

   The  different angles  can  change  the  size or appearance...when some  report  a growth or  that the tonsils may have  shrank...it is really  how the  angles are  being viewed....

  Let  that   info   go  for now   and  focus  on  getting a CINE MRI and  testing  to rule out ALL  related conditions...and research  Drs...having the right  one is  key.

[MissJoanne]

Thanks for your quick response.  What is POTS? And yes, I do remember a doctor explaining that at the angle she was looking at the MRI it was a 3 or 4.  At Stanford emergency they must have been looking at another angle. The doctor I saw at Stanford just sort of dismissed it as Chiari, when Stanford  emergency  ran many test, MRIs and spinal taps and confirmed a #8 Chiari Malformation. This is very confusing!

[selmaS]

  Hi  and  welcome  to the  Chiari forum.

What you  have  is Chiari Malformation I....with a herniation of  an 8  or  3  or  4....which  is really  not  as  important as if  it  is  creating a CSF obstruction...

  It  is possible  to get  different measurements...bcuz the  Dr is  not  aware  of  how  to do  the measuring....or  if they  are looking  at diff MRI's  the angles  and  slices  can  be different....

It  also sounds like  you may have  POTS,,,,,there  is  more  testing you should have....have you  had a recent MRI? to see if there  have been  any changes?

  We do have a list of  Drs  for you  to  use  to  research  Drs....the  list  is  not  a referral nor an  endorsement....http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  Be advised you  may  not  find a Dr  in  your  area  and may  need  to travel....many  of us  do...

Know you  are not alone  <3