Post by richandsamantha on Nov 29, 2014 22:41:16 GMT -6
My husband was diagnosed with an ependymoma May 2013 at age 38. He kept have left sided weakness and painful headaches as well as increased fatigue. His physcian's assistant was expecting to find another herniated disk in his cervical spine, as he was previously dx with bulging disks in lumbar spine (he had lifted weights heavily since he was a teenager, and always very physically fit). The MRI in April 2013 revealed a 8 mm x 8mm tumor ependymoma or astrocytoma by the radiologist. We were then referred to a neurosurgeon at UPMC Pittsburgh, PA, who was supposedly the best in the area. We were frightened into having the surgery quickly being told that if he did not have the surgery he could start to have respiratory problems and die, and the surgery would have minimal side effects probably just damage to the nerve that told his feet where to step without looking- this is what the surgeon told us. So we immediately started with the preop tests and surgery was performed 5/9/2013. I wish we would have done more research, especially my self, being an RN, hindsight is 20/20. Richard woke up from the surgery not being able to move is left leg, and had a strange numbness from the chest down. The tumor was unable to be removed because of nerve damage sensors going off during surgery and a biopsy was taken. Ependymoma grade 2. The next step was gamma knife radiation, but due to our insurance we ended up with external beam radiation. He endured 6 weeks of radiation 5 days a week. over the summer of 2013. His last mri post radiation showed no changes, tumor is the same size 8x8 mm c4-c5. He now has deficits that he did not have prior to surgery/radiation, and more pain then he has ever experience previously. We have been to pain specialists, and tried this narcotic and that narcotic, and nothing really seems to be effective. Decadron helped the most when he was on it, but had very bad side effects, he gained over 50 lbs and mood changes. Unable to go to Johns Hopkins because my insurance plan says its out of network. Our next step is to go see Dr. Lieberman an neurooncologist at UPMC and member of the CERN foundation (why were we not told about him while Rich was in the hospital??? why would the neurosurgeon not refer us to a surgeon who has done surgery on an ependymoma before???) Any way, I see tons of posts on here where people have had their tumors complete resection, but anyone who has a case similar? My husband gets very down, always says he is dying, but mostly i think he just feels alone. It has been a long road and I believe it is far from over. I have not always been the best support system. Any responses will be greatly appreciated. Thank you. 
