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12184404 tn?1423887703

PLEASE HELP

My name is Josh.  I am 31 and was diagnosed with Chiari 1 and Syringromyelia in 2009.  My little sister also had it be for she passed away in 2013 from the medication she was taking for pain.  My daughter probably has it also.  Although she is not old enough for them to see it she has had the exact same lower body pain I do starting at 3 years old also like me.  I have had to cranial decompression surgeries with no improvement.  In fact its quite the opposite.  I am now permanently disabled and have been since 2005.  I have a pain management doctor I love but pain meds lately are not controlling the lower body pain anymore.  I am at a 10 on my pain scale every night.  I need to find a doctor who really knows Arnold Chiari.  I am in San Diego and can't find anything local.  If anyone knows of a doctor who takes Medicare/ Medical.  Please help me I'm at the end of my rope.  
2 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

My deepest sympathies on the loss of your sister.....

We do have a list of Chiari Drs....not all on the list are true Chiari specialists but  the members here list their Drs they like after they have been to and treated by the Dr....you would have to research them to see if they take your medical INS.....and it is possible that there is not one near you and you may have to travel.....http://www.medhelp.org/posts/Chiari-Malformation/-Chiari--Drs-list--links-2015/show/2415432

May I ask, were you checked for other related conditions? Ans ask why you required 2 surgeries?.....

  

9432311 tn?1432825085
Hello. I am not sure of the geography between San Diego and Los Angeles, but I recently learned of a second cousin of mine who saw Dr. Jorge Lazareff at the Ronald Reagan UCLA Medical Center in Los Angeles. My cousin's symptoms are much like mine with Chiari and I spoke to her about it being hereditary. I know that she only had an initial appointment with the doctor and she said he was really thorough. I really don't know about the distance you would have to travel, or the insurance that his practice works with, but I thought I would give you a name to start with. I do believe that this doctor is on the list that Selma refers to above.
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