Tori met with a neurosurgeon at Albany Medical Center today. First let me say, Heather and Tori both liked him very , very much. It was a very long visit. First he sat and listened to Tori tell him in her own words everything that has gone on for the last 7 months. He listened carefully, listened to the smallest detail. He had looked at all the films and reports before seeing her and was very unhappy with them. Tori's body spasm's involuntarily and did so often during all the CT's, MRI's and ultrasounds. But he was able to see them well enough to glean some basic information and after seeing Tori , took Heather into look at the films with him. Starting at the top, there is minimul extension of the cerebellar tonsils (her brain) but enough of an indication for him to believe if the spinal problems are not addressed properly now, she will be going through brain surgery for Chiari Malformation in 10 years.
She has a leak. The pressure from the bulging disk and syrinx in her back has caused so much pressure the in her neck area she is leaking cerespinal fluid. This fluid is accumulating in her skull and putting alot of pressure on her brain. The space below the bulging disk, is also causing an accumulation of fluid in that area. The "cyst" in her throat is actually a small tumor possibly "residual thyroid" tissue.
He will be operating on her back, doing what ever they do to relieve the bulging disc, draining the syrinx and putting a shunt in her head to drain the fluid accumulation on her brain. BUT,
before they make a positive game plan he wants proper pictures with dye. Not a full body MRI.
He wants one just of her brain. Then he wants one just of her Throat, He wants on just of the TSpine and last he wants one Just of the LSpine.
Heather also has to go get a referral from Tori's MD for a Thyroid Specialist because of course this is not the Neurosurgeons area.
Any way that is what we know today and after all these new tests are done Tori will see him again and and they will create an absolute game plan. In the mean time she has new prescriptions, pain meds, sleep meds, and I will update when we know more. Thanks guy's
If any one has any ideas how to keep a bedridden 14 year old entertained let me know.