1982 Brain Tumor - Late Effects Radiation

Hi Everyone - 

I feel I first must apologize in advance, as I know my introductory experience will be lenghty since it's been going on for decades, but I do feel it's important information, especially if someone else has had a similar experience. 

I'm new to this site, but am happy I learned of it.  I've read several stories today and while it makes me very sad to see the struggles so many have, I'm happy to see there's a place where people can share with others, gain support and hopefully find relief during their journey.

My name is Carolyn and I live in California. My husband, Kevin and I have been married 35 years. Three weeks before we were married, he experienced neuorogical problems. The left side of his body went numb, his speech slurred and he was confused. I drove him to ER and moments later he suffered a grand-mal seizure.  He was diagnosed with a brain tumor. After resection, it was determined it was an Astrocyoma, grade 3 1/2, according to the findings of the pathologists. He underwent six weeks of radiation. I'm assuming back then it was whole brain radiation, but I can't say for certain. He lost all of his hair on both sides of his head, and still only a patch grows on the very top of his head like a mohawk.  I'm mentioning this in case that could determine whether it was whole brain radiation, versus a more precisely aimed radiation. We've been unsuccessful at retrieving his radiation records from that long ago.

Shortly after radiation treatments, Kevin began having struggles with cognitive thinking. These were all mild and seemed to come and go, so we didn't give it much thought. Through the years, things became more noticable.  Time management was a very big struggle and his congnative thinking worsened. In early 2000, it was clear to me that something was seriously wrong, but after scans, doctor's couldn't find anything wrong, and no doctor even mentioned the late affects of radiation possibility.  I found that on my own, just by research.  

In 2009, Kevin had developed even more severe neurological problems. Again, I drove him to ER. And again, he had a grand-mal seizure.  It was like an exact repeat of our 1982 experience.  Scans showed no new tumor, so we were confused. He remained in the hospital and daily seemed to worsen. He lost his ability to walk, complete a sentence, and to see. He was in excuriating pain.  He said his entire head hurt and he could see what looked like "a lightening storm" in his head. His body temperature was normal, yet his skin was hot to the touch and we had to keep putting ice around him. It was so bizarre. None of the doctors could understand what was happening.  They moved him to the cardiac floor because his heart rate dropped to the 30s. They ran repeat scans, and every test they could think of. Still, no idea of what was happening.  They put him on a combination of anti-seisure meds and the seisures became less frequent.  After 2 1/2 weeks, he began to improve so they moved him to the rehab floor where they could help him walk, and regain function. His vision was still compromised and his cognitive thinking was still a big problem. He received excellent care from a company called Rehab Without Walls. They came to our home daily to work on occupational therapy, psycotherapy, and physical therapy. Treatment lasted for months and he slowly improved and we then began going to treatment centers to continue treatment for the following two years.

In 2010, after a routine brain scan, a new tumor was discovered. This one was a small meningoma, growing near the site of the original Astrocytoma found in 1982 and we were told it was likely caused from the radiation treatments he received. We were told this tumor is operable due to it's location in the brain. It's resting on a major blood vessel deep in the center. Radiation was the only suggested treatment. Again he had six weeks of radiation, but this time, pin-pointed to the tumor.  (Thank goodness technology has improved so much!) Tumor hasn't died, but it did shrink. He has scans every 4 months.

Fast-forward to where we are now.  Kevin is able to take care of his needs, meds, etc., but still strugges with time management and his personality continues to change. He often has outburts of rage and this is not who he is.  His doctors all agree that I should be the one making important decisions, including financial decisions in our partnership.  He's having a hard time letting this happen, and as much as I don't want to hurt him, I have to take these things over. I try to always make it a partnership decision, but nowadays his personality can snap pretty quickly. He has strange and unpredictable behaviors at times and I'm told by the doctors this is common with frontal lobe damage.  

All in all, I am more convinced than ever that although some doctors may not want to admit to the degree of radiation damage from 1982, I believe it's a real thing. Scans show deep white matter disease and he's only 58 years old. Non-smoker, non-drinker.  So I'm hoping to find someone who had a similar experience as the 1982 radiation experience and if so, how it's going.  I just can't imagine that we're the only ones experiencing this.

Again, I apologize for the length of this, but I felt all of it was relevent.  After coping with this for decades, we're all pretty tired and the stress of it is taking its toll. As for me, I'm  trying to keep myself healthy by exercising, eating right, and staying positive, but it's not easy, that's for sure.

Thank you everyone for listening.

Carolyn