severe headaches

My son was diagnosed with chiari type 1 when he was 12.  An arachnoid cyst had developed and created the chiari malformation and hydrochephalus.. We had 2 surgeries in 2002 .  The first surgery relieved his headaches but only for 6 weeks. The cyst refilled and a second surgery was performed with a plate to keep the cyst from refilling and a cauterization??? of the herniation which lifted the chiari out of his spinal column. We had specialist at UCLA.  He has had headaches continually since 6 weeks post surgery.  We have tried everything, biofeedback, pain clinic, Medication, chiropractors, accupuncture ,  a specialist who helps spina bifida patients to walk again with a  special massage technique of the neck and spinal column, botox, nothing has helped and his headaches are getting worse.  He also gets migranes (migraines), has allergies and a slight diviated septum.  The recent MRI showed white matter lesions in his frontal lobe parallel to the lateral ventricles.  What I have read, this could be from Migranes (migraines) or something like MS.  The chiari is still not herniated into the spinal column according to MRI , he still has mild ventricularmegaly, but he is getting numbness in his hands and his back hurts.  We have an appointment back at UCLA with the neurosurgeon .  My son wouldn't go to doctors after nothing worked the first time.  For him to have wanted an MRI and see a doctor , only means he must be really hurting.  He had decided when he was 16, he was done seeing doctors, He would live with this pain.  This broke my heart.  He is now 20 and has increased headaches and now back pain.  Has anyone had this much trouble trying to figure out what is going on for these headaches to be daily and now increasing???? Could he possibly have something going on in his spine that no one has looked at???  Any advice would be helpful.

[burdzmom]

tethered cord or a syrinx? were they ruled out initially? they could have developed post operative if there was and issue with CSF?
MRI is the way to go or brain and neck...even the back if the docs will go for it depending on where the pain is.
any chari specialist in your area?

[selmaS]

Hi...in addition to the possibility of TC or a syrinx..scar tissue or brain slump.....

Get copies of all MRI's done pre and post surgery and when was the most recent MRI?

With chiari changes can be taking place so it is best especially with changing symptoms to have MRI's to document the changes.

And get to a true chiari specialist...we do have a list here on the forum-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

"selma"

[keeyareekid]

The suggestions by Burdzmom and selmaS are very good. The manifestations they listed, as well as the presenting problems for which your son was treated, can be caused by an underlying collagen defect in a hereditary disorder of connective tissue (HDCT) such as Ehlers-Danlos syndrome (EDS), which is present in many Chiarians. NIH researchers are studying the connection. You can learn more about CM/EDS at ChiariConnectionInternational.com, which also maintains a good support group through yahoogroups, and in the online videos at TheChiariInstitute.com.
Good luck.
Sandy in Oregon