Hello, All…
When it comes to astrocytomas, I’ve been told by quite a few neurosurgeons that I’m as close to a miracle as they’ve ever seen. At age 14, in 1977, after two years of misdiagnoses, a team of neurosurgeons finally discovered that I had a grade III astrocytoma with two cysts interwoven with my spinal cord from C6 to T4. They were able to remove about 80% of the tumor that year, and I received 5000 rads of radiation in the hopes of eradicating what remained. 362 days after that first surgery, I returned for another excision. This time, the malignancy had grown upward and now extended from the brain stem area of the cord at C2 down to C7. I sustained minimal permanent damage and enjoyed a full nine years of remissions as a walkie before the astrocytoma returned. Astoundingly, I once again walked out of the hospital 10 days after that surgery.
Although I have been astrocytoma-free since that 1987 surgery, the tumor and treatments for it have directly or indirectly caused a number of other serious medical conditions, including:
***severe chronic pain,
***30 degree plus scoliosis and a 90 degree plus kyphosis (stabilized with posterior and anterior spinal fusions from C2-T4),
***a left trapezius muscle flap used to close the cervical spine incisions after two bouts with bacterial meningitis with coma,
***neuorogenic bladder;
***severe lung fibrosis in both lower lobes (caused by taking a long-term course of macrodantin as a prophylactic for UTIs from the spastic bladder),
***bronchiectasis (a spin-off from the lung fibrosis);
***incomplete spastic quadriplegia (I have some level of sensation, strength, and motor control in all limbs but use a wheelchair for mobility and intrathecal baclofen therapy plus oral meds to alleviate the spasticity), and
***a brain stem syrinx plus multiple locations where the cervical spinal cord is tethered to the dura (I refused a proposed extremely high risk surgical treatment for the tethering in 2004 and will almost certainly end up with hi-level quadriplegia as gravity takes its toll and the few spinal nerves in the cervical cord that remained after the astrocytoma surgeries/radiation age and die).
I have only ever met one other living person who shared my original astrocytoma diagnosis and lived well into their adult years. I would love to find a oeer group of some sort – although I doubt there is anyone else out there with the combination of rare conditions I’m living with, it would be so wonderful to find another long-term grade III astrocytoma survivor or adult living with cervical spinal cord tethering syndrome with whom to share moral support and compare experiences, frustrations, and strategies for coping.
(It would be a real bonus if my newly discovered peer has a spouse who might be interested in getting to know/providing a listening ear and moral support to my husband, who is also without peers as he struggles to cope with living with a chonically-ill, disabled spouse/soul mate.)
