Desperate for help for my niece/headaches

[debbier]

My niece is 23 yrs old with a history a Chiari and TMJ.  She has had bad headaches that start at the base of the skull and moves to the above eyes.  She has had them everyday for 6 months.  The severity varies.  She has had a CT scan, MRI and spinal tap all were normal.  She has tried steriods, beta blockers, Cymbalta, Celebrex, Topamax, Nortriptine and pain meds.  Nothing has brought relief.  Can anyone make any recommendations she is desperate for help.  She has seen numerous neurologists and they keep trying the same things.  We are on Long Island in NY if anyone has any recommendations for a great doctor.  

[selmaS]

  Hi...I am so sorry ur neice is going thru so much...chiari is not an easy condition to deal with as there r not many drs that know how to treat it....being in Long Island u have some of the  best Chiari Drs right there.....

Chiari is the malformation of the cerebellum part of the skull leaving it too small to contain the cerebellum part of the brain and the tonsils can be forced out and on to the spinal cord and brain stem causing compression and that results in the symptoms u mentioned.Chiari symptoms vary bcuz they also cycle....so u can have a flare depending on the activities she is involved in, or the amount of stress she is dealing with.

Most meds do not help pre op...but I started Topamax post op and do see some help.

    U need to have  a CINE MRI to determine if ur Niece has a CSF obstruction and overcrowding...odontoid that may be retroflexed.....and u want to rule out related condtitions Like sleep apnea, PTC,tethered cord, Ehlers-Danlos.......

  We do have a chiari forum here on MedHelp and it may be a good place to start-http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

   "selma"

[tim71]

I get the same headaches the only thing that helps is a drug called relpax, ive tryed all the others to no availe and I also have severe TMJ due to broken jaw at a very young age. Hope this helps.

[debbier]

I also wanted to add she has also tried Botox.  We would love to find a diagnosis and help her