unexplained shaking in head and neck

[Molly222]

How can we get to John Hopkins or Mayo clinic?  My son has been unable to walk since he was 13 years old due to severe neck and head tremors - shaking.  He is still undiagnosed.  He can only sit up while positioned in a custom wheelchair.  The first six months of his illness he was extremely dizzy.  After undergoing an adjustment by a chiropractor to his neck the dizziness went away but the spasms are still strong and uncontrolling.  The symptoms began after a vacation to Mexico where he had a severe ear infection that has also left him unable to hear certain sounds out of that ear.  The doctors didn't do any spinal taps until years later where he was found to have low opening pressures and after a mylogram was performed they found 15 places where he was leaking cfs fluid.  Several blood patches have been done and the latest mylogram showed no leaking.  Symptoms however never improved. After many experiments it was proven that he also has an elevated heart rate (sometimes doubling) while he chews his food.  This creates difficulty with concentration and maintaining life events. I will take any suggestions as far as other diagnostic test.  His MRIs as he lays down all come back normal except for looping of the vestibular nerve and a major blood vessel in his brain.  He can stop the shaking ONLY by laying down.  He can crawl.  He isn't paralyzed.  He can't sit on the toliet, shower chair, in the car, or any other seating device without constant painful shaking.  PLEASE SEND ANY AND ALL SUGGESTIONS

[ovtatiov]

my husband is 22yrs old and his head and neck shake to he left side,when he is relaxed it stop but at night at acertain it  will start and go for some seconds.i really wis you know wat is wrong with him because it is very embarassing and affect his daily activities

[Dr Vinod]

Sometimes the diagnosis becomes very difficult and i hope a good centre would help him out. You can google for their website and call them and can take an appointment, alternatively you can also e-mail them. There might be some developmental anomaly involved.