Jun 22, 2012 - 10:25 am
I'm new to this so here it goes...In 1985 I was diagnosed with a malignant brain tumor (Medulloblastoma) at 15yoa. Surgery (@ Shands Hospital Gainesville) was successful in removing 99% of the the tumor and radiation therapy took care of the rest. In addition to brain radiation, my spine was radiated as well as this type of tumor commonly spreads and/or reappears on the spine. I have been cancer/tumor free for the past 26yrs and remain so to date; HOWEVER, approximately 5yrs ago I began to notice a number of significant developments which have brought me here today. I have significant hearing loss in my right ear and continuous ringing in both. I have lost almost all sense of balance and the slightest shove or bump will cause me to tumble. I have lost a great deal of coordination and motor skill making normal activities like walking, biking, running, writing, brushing teeth, and speaking difficult. Over the last several years, these things have become more obvious to others and are beginning to affect my job. In 2008 I had an MRI which showed mild tissue and blood vessel damage/constriction around the surgery site; However, it was categorized as "consistent with surgery and post op treatment". NO signs of any new tumor growth were found. In 2011 I had another MRI which showed the same and concluded visible damage was caused by the tumor itself, the surgery to remove it, and the radiation which followed. Again, the damage was classified as mild, consistent with surgery and post op treatment, and showed NO sign of progression from previous MRI and NO new tumor growth. Also in 2011, I met with the Chairman of Neurosugery at Shands Hospital in the hopes of obtaining some type of explanation for my symptoms and a treatment. In short, I was told I should feel lucky to be alive and there was nothing that could be done and I should try to learn to live with the symptoms. Having researched this on my own, I have learned these types of symptoms are relatively common and can, as in my case, manifest themselves decades after the surgery. My problem is that I am finding it more and more difficult to perform daily tasks required to perform my job and am worried about being able to support my wife and children. As it is, I have difficulty putting my pants on without supporting myself against a wall or I chance falling over. What is most troubling to me is that there seems to be no definition of what this is, no name , no official diagnosis, and apparently no treatment. Is there anything I can do?