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Dec 14, 2017 Latest post:
Jan 23, 2018
Sidney had been experiencing gradual hearing loss over the course of 4-5 years, getting progressively worse. Because it was such a slow process she had compensated for it in other ways. In early October she began having severe headaches and blurry vision. Thanks to her co-worker's persistence (and threats "I'm going to tell your mom") she got in with a doctor on November 17th. After examining her and finding no obvious reason for the hearing loss, he sent her in for an immediate MRI the following day. That evening she was on the phone with a neurosurgeon who told her that she had a very large tumor, located in the middle of her head which was pressing on her brain stem. The compression of the brain stem had caused a build up of brain fluid which was not properly draining, which was the cause of the headaches and blurry vision. The tumor had also compressed the acoustic nerve causing the deafness. Other tests and information made the doctors confident that the mass was not cancerous, and something called a Ventricular/Acoustic Schwannoma. Despite the wonderful news that it was non-cancerous, due to its size and location, the tumor was quite serious and life threatening. Sidney's primary surgeon was adamant had this not been discovered she would have likely died in about 6 months due to her brain stem ceasing to function due to the tumor pressing on it.
From there things moved pretty rapidly. Many visits to many neuro-specialists, lots and lots of tests and a team of doctors each specializing in a different part of the process. If anything could be considered "lucky" it's that the rarity of this case has brought an amazing team of top neuro doctors together to be a part of her team. I mean, who doesn't want to be part of a unique and unusual case? The doctors have also all fallen under the delightful charms of our sweet and funny girl. They are all team Sidney 100%.
On November 29th her team performed the first of what will be several surgeries. The immediate threat was the hydrocephalus (fluid on the brain) which needed to be addressed quickly. In a three hour surgery they placed a shunt from the top of her skull down into her abdominal cavity. The surgery went perfectly and Sidney came through with flying colors. She was feeling better almost immediately and was able to go home after a 36 hour stay in the hospital. Her only set back in that first surgery was unfortunately getting some sort of stomach bug on Monday. Since the symptoms that the doctors said were "call us right away or go to the E.R" included vomiting, we took no risks and her surgeon ordered an immediate CT scan. Luckily it was not anything related to the surgery, just an unfortunate timing of a stomach bug. However the CT showed that the shunt was working well and doing its job moving the fluid. From there the next big step was the game plan to remove the tumor affectionately (or not so much) named "Toby" by Sidney and her cousin Kate . That surgery was scheduled at Scripps Mercy Hospital in San Diego. The plan of attack due to the size and location of the tumor was to do a Posterior Fossa Craniotomy which for you non-Neuro Surgeons means cut open the back of her skull behind her left ear, and remove the tumor. However due to Toby's size and location. It was decided that complete removal was too dangerous, so the plan was to partially remove or de-bulk what they could of the tumor leaving about 10% remaining. The 10% that was closest to some other critical areas, that they did not want to damage. Then later down the road in 6-8 weeks, do a series of "Cyber knife" operations which puts a concentrated direct radiation into the remaining tumor to shrink it.
The key things are that due to the size and location she will likely have some issues which we will tackle as things unfold. Mainly she will have some facial paralysis, and may possibly have to relearn some basic tasks.
Her surgery is happening December 14th and should last up to 10 hours or more. Caring Bridge seems to be the easiest place to share information so you can see updates on your own time. So far she has been in amazing spirits and attitude. She has been overwhelmed by the outpouring of love and support from friends, family and even strangers. As has her family. It has been a scary month but one that has helped us focus on the importance of just our being together.
We appreciate all the love, prayers and caring you have all extended to us. We will keep you updated here as best be can.