Jillian’s Story

Chondrosarcoma at the Skull Base
Age at Diagnosis: 42
Year of Diagnosis: 2004
Location: Australia

Diagnosis: I experienced double vision and lack of balance, left arm weakness, memory loss and confusion. If I look back over a period of years I can see problems like a constant noise in the ear (a low pitched noise) and left eye vision problems, but they all seemed to be there. I thought I had a mini-stroke, I was so confused and unable to make decisions.

I waited three days before finally attending the GP, who informed me that I had a middle ear infection and a painless migraine, two days later I returned and was told, it would clear, three days later I re-contacted the GP and was impatiently told ok, CT Scan and Blood work, I received the CT Scan was called to the GP Office that afternoon and involved I had a tumour in my skull base, I would need to see a neurosurgeon and I would have an operation to remove it.

One week later I saw the neurosurgeon, two weeks later I had an MRI and saw the neurosurgeon again, who informed me that he believed I had a Chordoma (a benign tumor) and he was to be away for several weeks. I spent 6 weeks waiting for surgery.

Treatment: I had a craniotomy with left side entry. The tumour was in the left cavernous sinus, and causing marked displacement of the carotid artery, wrapped around the left carotid artery. The operation report says there were large areas of calcified tumour that could not be removed, inoperable skull base chordoma.

The Surgeon and the Staff were absolutely wonderful. Follow up after 8 weeks with neurosurgeon Histology Report explained that this was not Chordoma but Chondrosarcoma some grade 1 , some grade 2. My follow-up MR after three months was clear. I am having vision problem, an urgent MRI is scheduled for 15th August, 2005. I received no Radiation and no chemo. Australia does not have Proton Beam therapy at this time in 2005.

Recovery: Tiredness is the only issue I have had, until vision problem lately. I found that with medication I was not allowed to drive a vehicle and found small things like phoning the local bus company, they then made astop outside my house.

Life Now: I made a full recovery, was back to full time work after one month after surgery, and was playing field hockey after two months.

Thoughts and Hints for New Patients: Hold on, Hang in there, I do believe its harder for the caregivers than us, we have to go through with the treatments etc, waiting is the hard thing, but we will fight and we will get through it.