Today we met with my DD pediatrician (also a board certified geneticist) who went over the report/diagnosis in detail. She said that she is pretty sure and we should prepare for DD to have the surgery. I've searched Dr. Google and he is one scary man let me tell ya! Most of the information I can find seems to say that because she has a syrinx surgery will more than likely be the course for treatment.
The MRI report state "the cerebellar tonsils extend 12 mm below the foramen magum. There is mild to moderately restricted CSF flow anteriorly and moderately restricted flow posteriorly at the the foramen magnum. 7mm linear area of bright signal in the spinal cord at the C3 level. This could represent a tiny syrinx."
The radiologist suggested a MRI w/wo contrast of the spine to be done.
Her symptoms are:
Severe headaches (thought they were migraines) that require dark room with little/no sound. The only thing that gives her 'bearable' pain relieve is migraine medication. She states the headache NEVER goes away completely.
Double vision
Numbness in fingertips (comes and goes and is not constant)
Dizziness when she stands up from a sitting position
Tends to trip/be clumsy
Head hurts more if she bends over or if standing for to long
Slight curve to her spine (scoliosis) that was not there three months ago. Ped checked her today because I mentioned that DD posture was off but I could not pinpoint why.
DD has had headaches for the last year but she had her first severe (wore eye covers and had to be led into the doctor's office for pain relief) headache in November 2012. The severe headache was attributed to a migraine coupled with Influenza A. It was thought that DD's headaches could have been from severe allergies (she has really bad allergies). It has been since then that we have noticed more and more symptoms. It was the daily headaches for one month straight that had the ped sending her in for the MRI.
DD is currently home schooled but was suppose to start the Running Start program in September. So far she has not had any problems with memory or school work. Unless she starts to have problems with that then I don't see why she could not do the Running Start program still, especially if she does online college.
DD has a fraternal twin sister who has a rare genetic disease (1 in 50,000) but does not share the same symptoms as CM. Bio-mom (I am step-mom and DD lives with us full-time) has CM type 1. The twin had to receive a recessive gene from both mom and dad to be affected by this other disorder. DD is a carrier.